Talk:Management of ME/CFS/Archive 1

Archive 1

Archive 2

Hydrocortisone

There does need to be some discussion on the current Article and recent edit which I have corrected. As the reference which attached to this new comment was actually a combined treatment so conclusion on hydrocortisone treatment amounts used in this trial (when used alone) cannot be drawn from that study.

A review article not referenced previously I think gives a better comparision. I quote from the text of the free Article; The first, by McKenzie et al. (PMID 9757853), prescribed hydrocortisone in a pattern approximating the normal diurnal variation in cortisol [13 mg/m2 (about 20–30 mg) at 0800 and 3 mg/m2 (about 5 mg) at 1400, daily]. Seventy patients with CDC-defined CFS, many with comorbid psychiatric diagnoses, received either active or placebo treatment for 3 months. There was a moderate but significant benefit on a global health scale, although not on other more specific measures of fatigue or disability. However, there was significant adrenal suppression in 12 of 33 patients on hydrocortisone. A second study (PMID 9989716) used much lower doses of 5–10 mg, chosen to represent a dose likely to replace the observed reduction of approximately 30% in 24-h UFC seen in previous studies. Thirty-two subjects entered a cross-over study, with 28 d on each treatment. There was a clinically significant fall in fatigue scores in 34% on active treatment (28% returning to levels of fatigue at or below the population median score), compared with 13% (9%) on placebo. There were large reductions in self-rated disability scores in those whose fatigue improved. Furthermore, on this dose of hydrocortisone, there was no significant adrenal suppression, and there were no serious adverse effects. ------However, the second treatment study (PMID 9989716) was short term only, and the positive effects wore off rapidly on the switch to placebo; thus, routine use of this strategy as a treatment is not recommended without further evaluation. PMID 12700181

There are several problems with this review, firstly the author reviews his own study and secondly the use of co-morbid patients in the first study does not necessarily relate and give comparrision to all CFS groups, therefore the need to give more details in the Article.

There has been some study more recently by Cleare and co. (presumably using tertiary referral patients again) to try and show cortisol basis of patients. PMID 15922454 PMID 16439267 The selection basis of patients may explain the different trial findings? Jagra (talk) 05:14, 24 April 2008 (UTC)

I added more details in the Article of the co-morbid study to clarify matters. I do believe it is an important research and there are lots of extra details that need to be added to fully understand all his points in the review of all the previous articles, such as showing that long term use of low-dose HC does not induce bone-loss, adrenal suppression or immune suppression, as he shows in a long discussion. But in this encyclopedia article, I tried to make it as short as possible (though quite unsuccessfully). If you can make it even shorter without removing the reference it would be ok in my opinion. Regarding the review you mentioned feel free to add it but I feel this section is already too long and it's better to review only the latest articles. Mathityahu (talk) 13:18, 24 April 2008 (UTC)

The J of CFS is generally considered Wp:RS and that particular reveiw appears to have been comprohensive and well referenced, although it does not mention the adrenal suppression in the McKenzie trial so your comments on safety of HC use are his POV. To shorten to the basics and allow readers to inspect sources further is the aim.

I have removed the following from the text as it is unsourced "The study mentioned in the review had been a multi-faceted approach including a complex treatment protocol in which cortisol was only a part, was performed on over 4000 patients, and demonstrated that 85% of patients improved by the 4th visit. The author notes that "cortisol supplementation was shown to be a beneficial and safe therapeutic intervention with little or no risk." Much more detail would be needed to include this statement.Jagra (talk) 01:19, 25 April 2008 (UTC)

OK. As you said "To shorten to the basics and allow readers to inspect sources further is the aim." and I agree. Mathityahu (talk) 08:30, 25 April 2008 (UTC)

Lipid replacement therapy

This is actually Essential fatty acid treatment, which is covered lower in the Article. Also we have in past only included studies that are RCT's There are just too many pilot studies to take seriously. Please provide a link to the Article you referenced or PMID numbers on this page so that the details can be verified. Suggest you use Diberri's tool in future and it will automatically provide links. For any such as the J of CFS (referenced in hydrocortisone above) and not on pubmed it would be advisable to provide a link to the paper here also.Jagra (talk) 10:04, 24 April 2008 (UTC)

I added links to everything. I believe that including pilot studies showing good results is much better than the current state of the article, of including studies that are unknown in effectiveness. If you know of other pilot studies I'd be delighted to add them.

I believe the section of fatty acids treatment should be removed as it is unknown in effectiveness and treatment is different than that of that in the phospholipids section (omega-3 is not phospholipids). I added a section about mitochondria treatments with the latest results (also d-ribose treatment). I don't think there's a place for old articles with unknown effectiveness.

Mathityahu (talk) 13:19, 24 April 2008 (UTC)

I suggest you read the Talk page and Archives of the Main Article CFS for a better understanding of exactly what is and is not acceptable here. Yes the Essential fatty acid section can be improved but not with the edits you have provided for reasons given below. I have removed the following edit to this page for discussion and make comments below. Omega 3 efa's are incorporated naturally into phospholipids , suggest you do some reading, before pontificating further. Jagra (talk) 01:58, 25 April 2008 (UTC)

Mitochondria enhancement

Enhancement using phospholipids

A cell’s functional capacity can be measured, in part, by the fluidity of its membranes and its cell-to-cell communication capacity. One of the most common forms of cell damage is created by free radicals, which reduce membrane fluidity, cell communication, and cell to cell function. Protecting cell membrane integrity is thought to enhance cellular health, energy and efficient metabolism. Preventing loss of membrane integrity due to damaged components and the resultant loss of cellular energy may be accomplished, in part, by replacement of damaged lipids. It has been shown that a treatment with a dietary supplement rich in phospholipids lowers fatigue by an average of 33%, after 8 weeks.

Enhancement using D-Ribose

D-Ribose is a key molecule in the energy creation process in the mitochondria. In a place-controlled, double-blind study of supplementing D-ribose, 66% of patients have improved, energy levels have rised by 45% and there was an overall improvement of 30% in the patients.

COMMENTS

Paper by Nicholson J of CFS on Lipid replacement: from the link provided,

- Appears to be not a reveiw but report on own trial only.

- No details on patient selection criteria given

- No mention of controls in trial

- No patient numbers or statistics

- No details of placebo, if any?

If you can provide these details by direct quotes from paper, and they are satisfactory, it will be considered further

J of CFS paper 2003;

- Trial is not with criteria defined CFS but with "fatigued aged'

- Not an RCT trial

- 20 only patients without controls cannot be statistically relevant

PMID 17109576 An uncontrolled pilot study, numbers unlikely to be statistically significant. Interesting but these referenced do not cut the Article grade.

This is a suitable page for discussion of recent trials and other users can read or comment further. Jagra (talk) 01:58, 25 April 2008 (UTC)

I cannot bring other studies, that's what I have. Although I do believe these sections are better than the other sections currently in the article, with the "unknown effectiveness". Mathityahu (talk) 08:30, 25 April 2008 (UTC)

You are correct it is not a right conclusion regarding EFA treatments, we have consensus on that, but we do not need uncontrolled studies to show this. There are RCT's that demonstrate reproducability for this treatment in certain CFS subgroups. It is unfortunate that certain reveiwers did not research the literature adequately before reaching their POV conclusion. It was also unfortunate that others selected a placebo that in their own paper they admitted was questionable. It is also questionable to compare trial results between different subgroups without mentioning that. It is necessary in order to show WP:NPOV that we bring this out, but in doing so we can only report what others have said, that is why the detail in studies and reveiws is important. I will address this in the near future. Jagra (talk) 10:46, 25 April 2008 (UTC)

CFS, diet and supplements

Thank you. I think that when addressing this issue of CFS treatments/diet, it would be helpful for the readers to separate those findings of articles that have been shown to improve patients clinically (that is, improve symptoms) and the articles that improve only the biochemical blood/urine/saliva testing. Also I think that "logical" suggestions of what to eat(even if well referenced) should be separated from those that have a proven clinical value (not only biochemical). Mathityahu (talk) 06:33, 27 April 2008 (UTC)

Well, An RCT trial is unlikely to be of value unless patients improve! Reason biochemical tests are sought is that patient reported improvement is a subjective test and objective tests are needed in CFS to both confirm trial results and for possible diagnostic use. A trial that has both is better than one without. When it comes to diet in CFS this is a very under researched aspect, see ME/CFS controversies regarding research funding issues. Frankly so is expecting supplements to have effect before adjusting basic diet parameters, just not scientific. For instance the calcium / magnesium ratio (Ca2+/Mg2+) is considered to be an important guide for signs of peripheral vasoconstriction and or spasm and possibly enhanced atherogenesis. Overall, the data point to important uses for IMg2+ in the diagnosis and treatment of disease states. PMID 7939386. However there are some supplements where RCT's have been conducted and I will address this in near future, Even a small RCT trial is a useful indicator of likely effectiveness, than uncontrolled studies, no matter how large. Jagra (talk) 03:42, 28 April 2008 (UTC)

Regarding Magnesium supplements:This article at present includes the words “magnesium treatments in dietary supplements having "unknown effectiveness”” This 2000 year review however does not compare different RCT’s but rather an RCT showing benefit with three papers showing no magnesium deficiency findings! In doing so it was selective in which findings it chose to quote and ignored other findings of lowered magnesium status in CFS including:

This review also in 2000 tabulates the findings of 9 studies to the same period with more balance and concludes; that overall they show marginal magnesium deficiency in CFS. Regarding the RCT treatment trials it says; ‘Perhaps the best clinical study to date involved patients with low erythrocyte magnesium levels who randomly received 100 mg magnesium IM or placebo each week for six weeks. “Twelve of the 15 patients who received magnesium felt better compared to only three of the 17 patients who received placebo. Moreover, erythrocyte magnesium levels returned to normal in all of the patients receiving magnesium, but in only one patient who received placebo. These findings are consistent with a report that CFS patients who were not magnesium-deficient failed to benefit from an injection of 580 mg magnesium, six times the dosage received by the group of magnesium deficient patients. PMID 1352002” That is one of the three ref’s used by Reid to discount the Cox study! It stands to reason those patients not magnesium deficient recorded no benefit from magnesium supplementation, but this does not indicate unknown effectiveness in patients with known deficiency, when an RCT indicates otherwise.

Since that time several studies have found lowered magnesium status in CFS; PMID 12745627 serum magnesium, PMID 10872900 found low magnesium in 47% and “Mg supplementation was followed by an improvement in Mg body stores,” One reveiw since PMID 12410623 concludes IV magnesium in a mixture is of value, other reveiws since like PMID 12030424, and PMID 12635882 consider that there is magnesium deficiency in CFS. There is also more recent evidence of altered magnesium metabolism in CFS, PMID 16405742. If we are to include reviews comparing RCT’s with only negative study findings then for NPOV we need to include other reveiws that compare same RCT's with findings. On balance it seems the Reid review is at best dated. Jagra (talk) 03:50, 29 April 2008 (UTC)

Regarding Carnitine; there have now been 3 RCT's finding benefit for this supplement in CFS. Werbach comments that Plioplys (author of first study) believes only one-third of CFS patients are carnitine responders. Of the responders, some improve so dramatically that, even if they were fully disabled initially, they return to normal functioning and remain well if they continue taking the supplement. Unfortunately, he found that pretesting of baseline serum levels of L-carnitine failed to predict who would respond. Possibly subgroup differences may effect responses? Response rates have been higher in the subsequent trials (50 to 60% on some parameters).Jagra (talk) 01:49, 30 April 2008 (UTC)

One RCT has been conducted on a polynutrient (multi-vitamin, mineral and enzyme) supplement in CDC defined patients, but no significant differences were found between the placebo and the treated group on any of the outcome measures used. The trial concludes that the findings do not support the use of a broad-spectrum nutritional supplement in treating CFS-related symptoms. PMID 12324640

However no testing was carried out either before or after the trial to assess deficiencies, marginal or otherwise and so conclusions cannot be drawn from this result on whether such low doses could correct deficiences in patients or whether or not correction of deficiences is of benefit in treatment of CFS. Jagra (talk) 07:19, 30 April 2008 (UTC)

Thymic Protein

Please see whether this thymic study article fits the criteria to be mentioned in wikipedia Mathityahu (talk) 06:43, 27 April 2008 (UTC)

1) The J of Nutrition and Environmental Medicine is not listed by the US National Library of Medicine and indicates it not likely a WP:RS reliable source.

2) Not a Controlled trial.

3) Paper alludes to Fukuda 1994 CFS definition but does not specifically say patients selected to this criteria, there is no seperate CFIDS criteria.

4) Abstract says 16 out of 23 patients improved, this is clearly misleading as 36 patients were enrolled in the study. 13 patients (36%) dropped out due to "unpleasant effects" but are not counted in results so statistics are skewed and would certainly alter the significance of results if included properly. How many improved due to placebo effect?

5) Papers conclusion that a RCT is needed to properly evaluate this treatment is correct, and we shall await a proper trial before considering inclusion.

Jagra (talk) 03:42, 28 April 2008 (UTC)

Speculation section

Here is what I am moving from the article, it is really just speculation, "may" etc. CFS cause(s) is not known. These are not accepted treatments.

Other medical treatments

Allergy identification and treatment

In cases where CFS-like symptoms may be caused by allergies, enzyme deficiencies or food intolerance, such as chronic sinusitis, coeliac disease, or irritable bowel syndrome, allergy testing, treatments, or elimination diets may prove beneficial.

Ok, that is all. RetroS1mone talk 13:35, 14 November 2008 (UTC)

Yes probably should say something like;

In cases where CFS patients have symptoms or exaccerbations caused by allergies, enzyme deficiencies or food intolerance, such as chronic sinusitis, coeliac disease, or irritable bowel syndrome, allergy testing, treatments, or elimination diets may prove beneficial.Jagra (talk) 04:52, 10 April 2009 (UTC)

Treatment and management merger

Treatment and management should be merged. Yes i guess there is a difference between treatment and management but lets face it the difference is technical and alot of reviews put things like CBT and GET in treatment catagory. RetroS1mone talk 13:42, 14 November 2008 (UTC)

Merged. CBT and GET go first because reviews say they are the only two interventions working. RetroS1mone talk 04:45, 18 November 2008 (UTC)

This article needs updating

This article completely ignores treatment with anti-virals. I can name three researches/clinicians who are using anti-virals to treat ME/CFS (who have also published peer reviewed research available from various health libraries), in specific diganostic sub-categories of ME/CFS patients:

- Dr. John Chia, Interferon 2-Alfa + Interferon 1 Beta, for the treatment of chronic enteroviral infection
- Dr. Lerner + Dr. Jose Montoya, Valaciclovir + Valganciclovir, for the treatment of chronic Herpes Virus infections, in particular HHV4 (Epstein Barr virus), HHV5 (Cytomegalovirus), & HHV6.

These Doctors have found biochemical markers of chronic viral infections in ME/CFS patients, that otherwise standard clinical viral testing does not find.

This needs to be mentioned on this page, as it shows that:

a) In some subsets of ME/CFS patients there is an identifiable cause for the illness.
b) There is specific treatment that can offer a large degree of remission in symptoms and disability.
c) In these subgroups of patients CBT + GET is completely inappropriate.^{[Signature Missing]}

I'd like to second all the points made above. CFS researchers suspect viral infections in many cases of CFS for a number of reasons, including the fact that most CFS starts with the occurrence of flu-like symptoms. Yesterday's research announcement concerning the relationship with XMRV infection strengthens the viral-infection case considerably. This article needs updating. David spector (talk) 11:29, 9 October 2009 (UTC)

I agree Chia and Lerners papers have moved the field forward and are significant, they need to be included on this page for completeness Goldstein123 (talk) 17:33, 18 April 2010 (UTC)

I have added a line about Dr Lerner under the valacyclovir sub heading Goldstein123 (talk) 17:38, 18 April 2010 (UTC)

once again SCIENCEWATCHER has undone my edit without giving specifically WHY it fails MEDRS, also the study he has "allowed" is specifically about acyclovir rather than VALAcyclovir so not allowing Lerner becuase there is already a paper of the same type is illogical Goldstein123 (talk) 19:41, 18 April 2010 (UTC)

See discussion at bottom of this page. --sciencewatcher (talk) 19:46, 18 April 2010 (UTC)

Effectiveness

I have removed the sentence

• Beyond two management techniques, no treatments have been accepted as effective.

from he lead since it does not reflect what is said in the section. According to even the most propagandistic reviews there is just the rare study that (allegedly) shows promise, and these techniques as well as the research into it are under heavy criticism. Guido den Broeder (talk, visit) 13:16, 30 November 2008 (UTC)

Guido's suggestion may need modification due to yesterday's announcement of the relationship between XMRV and CFS. David spector (talk) 11:34, 9 October 2009 (UTC)

treatment with cortisol

why was this review deleted? The author reports the safety and effectiveness of the treatment in over 4000 patients and recommends a therapeutic trial, I think it should be mentioned. Besides, there are a few other citations and text that were removed and the "hormones" section was shortened to two lines, I think it deserves more as there are many references available on this matter. I suggest returning the previous sections. [1] [2] [3]Mathityahu (talk) 17:53, 4 December 2008 (UTC)

The reason given was, "remove non rs source, this is not what the studies say". It definitely was what the study says though (quote was apparently taken from the abstract). The non reliable source reason, however, I agree with due to this policy (from their website) "While it is important to publish in many different peer-reviewed journals, expert reviews take up lengthy periods of time and the lag time between submission and publication can often be up to two years. For that reason, a well-respected expert panel has been drawn together to serve as the Editorial Board, which allows for critical, rapid reviews of basic, clinical, and multidisciplinary work."

I also find it interesting that the one double blind study, that used low does of cortisol only(which wouldn't threaten blinding unlike higher doses) found no significant effect. I think the way the reviewer presented this also says something about their bias "There was significant improvement in fatigue scores with treatment as measured with an Abbreviated Fatigue Questionnaire (p = 0.004), but there was a significant placebo response so it was not significantly different from placebo." Most people would have just said there was a significant placebo response and no significant effect of the treatment over the placebo group, which of course makes the treatment sound a lot less promising. The reviewers optimism about the treatment despite the negative results in the properly controlled studies is also telling. JamesStewart7 (talk) 12:17, 16 February 2009 (UTC)

If I understand the logic of the first paragraph, the objection is the journal lacks peer review. Yet the explanation of the review policy of the publication falls within the definition of peer review.[4] That doesn't seem to be a persuasive argument for deeming the source non reliable.

I agree to an extent with editors discussing what weaknesses a study or review might have. But I do object when phrases are parsed to indicate there may be biases in certain studies, yet large biases in other studies (ie Prins) can't be discussed,[5] "Patients were eligible for the study if they met the US Centers for Disease Control and Prevention criteria for CFS, with the exception of the criterion requiring four of eight additional symptoms to be present." In other words if they had fatigue for 6 months (not chronic fatigue syndrome) they were eligible for a chronic fatigue syndrome study. There needs to be consistency about how the sources are treated in the major differing views of CFS, physiological verses biosocial. Ward20 (talk) 21:48, 16 February 2009 (UTC)

And welcome back James. Ward20 (talk) 21:54, 16 February 2009 (UTC)

All the major reviews say that cortisol is not really useful as a treatment, and as per WP:MEDRS you can't use a lower quality reference to contradict a higher quality one. Also this is JCFS which is debatable as a reliable source anyway. In view of that we definitely should be looking carefully at the content of the reference. In this case if you read the text you will see that it doesn't in fact match up with the abstract. Read it through and you will see that cortisol has NOT in fact been proven to be effective. --sciencewatcher (talk) 00:00, 17 February 2009 (UTC)

I'm not saying we should discuss the biases of the study in the article or anything like that. I'm just saying the source is questionable. The reviewer does not outline their methodology or decision criteria and the reviewers own sources don't support a lot of their statements. While JCFS may have a peer review process in the strictest definition of the word, the peer review process is nothing like that which you find in mainstream medical journals. In JCFS everything is filtered through one editorial board so the journal really adopts the biases of that board whereas with most journals each article is reviewed by several members of the wider scientific community. This later process is generally what people are referring to when they say "peer review", not some abstract definition of the word. Because of this, if we include this review is included we should also cover the other reviews in mainstream medical journals and give them more weight. We should also not quote the article and instead give a brief summary of its findings. So if you still want to go ahead and include it, that's fine but bear in mind we must satisfy WP:WEIGHT which means this article can't have three times the space devoted to it as the other sources nor can it be used to "debunk" them as was the previous implication of the text. JamesStewart7 (talk) 00:37, 17 February 2009 (UTC)

PS Can I just say I'm quite impressed with the work that has been done on this article in my absence. JamesStewart7 (talk) 00:38, 17 February 2009 (UTC)

Carnitine Treatment

An RCT trial of carnitine PMID 17658628 was removed from this article with the comment “they were not CFS patients they were elderly had fatigue” The abstract says “They met four or more of the Holmes major criteria or at least six of Fukuda minor criteria.” If one looks at the table 1 in the full text they also all met three of four major criteria for Fukuda. In other words they all had CDC 1994 if we exclude but one symptom - is not the result of ongoing exertion. Probably hard to evaluate in the elderly except 81% had >50% activity reduction? Alternatrively it could be argued, they met CDC 1988 except for minor criteria. Now this article has already accepted the Prins paper which excludes certain diagnostic Fukuda, and some consistency needs to be demonstrated here. Either we exclude all papers not meeting full diagnostic criteria or we accept all partial diagnosis, i.e. idiopathic chronic fatigue. In which case the title of the page should be altered. Jagra (talk) 04:39, 10 April 2009 (UTC)

There is already a Carnitine section in the article with a couple of references. Question: was this trial placebo controlled? It doesn't mention so in the abstract and I don't have access to the fulltext. --sciencewatcher (talk) 14:44, 10 April 2009 (UTC)

Well I guess the CBT section could do without the Prins stuff too? In answer to your question, yes it is an RCT trial, quoting from the methods section it says "subjects were randomised by a computer- generated randomised schedule into two groups: 48 subjects were given ALC and the remainder 48 were given placebo throughout a 180 day period".Jagra (talk) 23:29, 10 April 2009 (UTC)

OT, but the unsystematic 'review' by Prins 2006 is wrongly treated in the CBT section as established scientific fact. I've changed the last sentence to make the authors' position visible (and to remove some characteristic overstatement).Sam Weller (talk) 13:46, 15 April 2009 (UTC)

It is a Lancet systematic review. So you don't like Lancet. Well most people and Wikipedia does. Just bc you disagree on conclusions does not mean it is not a authority. RetroS1mone talk 12:16, 16 April 2009 (UTC)

Retro, your use of the phrase "systematic review" indicates what I have said all along - you don't know what a systematic review is. Show us the hypotheses, the protocol, the methods section, the analysis. There are none, because it is a plain old-fashioned "narrative review", possibly useful as a briefing for people who don't know much about the topic. But it can in no way be relied on for diagnostic or treatment options. And the insertion of biased conjectures into the narrative on why there might be opposition to CBT (ignoring empirical reasons such as the absence of trials in the seriously ill) further diminishes what was never an impartial piece of work in the first place.Sam Weller (talk) 14:31, 16 April 2009 (UTC)

WP has a criteria for reviews, it is they are published by a recognized expert. Prins and the group are recognized experts and the review is in leading medical journal in world. WP does not say a review is old fashion or biased. Your objections are OR. RetroS1mone talk 12:36, 17 April 2009 (UTC)

WP also gives preference to systematic reviews over narrative reviews. WP:MEDRS states: "A systematic review uses a reproducible methodology to select primary studies meeting an explicit criteria in order to answer a specific question. Such reviews should be more reliable, accurate and less prone to bias than a narrative review." - Tekaphor (TALK) 08:12, 12 August 2009 (UTC)

Essential fatty acid trials

Seems to have been a concerted effort to remove RCT trials that show effectiveness in other than CBT? In this case gold standard DBPCT trials at that. Also I can find no text in the references given for the words in the current article “ Companies that sell dietary supplements known as essential fatty acids (EFA) have proposed that they could be used as a CFS treatment.” There are no such statements by companies nor is there evidence of commercial sponsorship or support in any of the three EFA studies, either in the abstracts or the full texts. The words are therefore WP:OR. More importantly a number of caveats that bear on the studies and the Reid and subsequent reviews have also been deleted, and for a NPOV are to be re-instated.Jagra (talk) 23:26, 10 April 2009 (UTC)

Caveats going missing? Gee, I'm surprised. ;-) _ Tekaphor (TALK) 17:20, 17 April 2009 (UTC)

Mental fatigue vs cognitive impairment

The current text implies that there is no association between subjective complaints of mental fatigue and objective measurement of cognitive impairment. There are several studies which contradict this notion (PMID 16395303 | PMID 8331359 | PMID 15907308 | PMID 17408973) so the option was to remove the text in question or add these studies. I raised this issue a while ago ("Cognitive performance vs reported mental fatigue" under [6]). I decided on removal because the article is about treatment and it seemed inappropriate to either give room for a single study which is contradicted by several other studies that aren't mentioned, and mentioning them as well is getting off-track. I thought it would be best just to leave out the whole issue, so I recently made the following edit: [7]. RetroS1mone has unsurprisingly reverted the edit [8] as "put POV deletion back in". Hypocritically, an unrelated "POV deletion" was performed in the same process (ie removing the text about the CBT pain study which found that "higher pain at baseline was associated with a negative treatment outcome", why remove such an important fact about the study?). I'm going to revert both these edits. - Tekaphor (TALK) 09:58, 16 April 2009 (UTC)

Why do you use these words unsurprisingly and hypocritclly, that is very uncivil Tekaphor. I am just thinking, a single purpose editor, and that is not uncivil it is what you are, does not get decide what is important fact and what is not. RetroS1mone talk 12:14, 16 April 2009 (UTC)

I used those words because they describe my response to your actions; I'm unsurprised by them and I think they're hypocritical, nothing really uncivil about that. I'm only one editor, but the fact that I only edit a few articles doesn't make my points any less valid. It would be more productive if you demonstrated more interest in the actual topic at hand instead of complaining about "naughty words" (and conspiracy theories). - Tekaphor (TALK) 04:22, 17 April 2009 (UTC)

Yes and you keep being uncivil, say I am in preschool in your edit summary, say I am not interested in the topic. It is not productive you are making personal. RetroS1mone talk 12:33, 17 April 2009 (UTC)

When there is a dispute, you rarely discuss the actual edits but instead just automatically revert/reject nearly everything as "advocate agenda" or nick pick about "uncivility", "secret cabals", and "single purpose accounts". This hasn't been encouraging the assumption of good faith, so don't be surprised when it's not forthcoming. - Tekaphor (TALK) 17:19, 17 April 2009 (UTC)

Why might patient groups oppose CBT?

The CBT section wrongly stated or implied that there was empirical evidence that many patients’ organisations oppose CBT because its success implies they are psychologically ill, citing Prins 2006. I changed this to reflect what CBT advocate Prins actually said: 'CBT advocates have argued that some patients’ organisations are wrong in believing that "the success of CBT confirms the bias that CFS has a psychogenic cause." That is a referenced fact. It was reverted as POV. I have reverted it again. Please discuss here.Sam Weller (talk) 10:16, 16 April 2009 (UTC)

Good work, Sam. - Tekaphor (TALK) 10:51, 16 April 2009 (UTC)

CBT advocates is POV Verbal was right on reverting. RetroS1mone talk 12:12, 16 April 2009 (UTC)

Antidepressants

Remove ref Schönfeldt-Lecuona C, Connemann BJ, Wolf RC, Braun M, Freudenmann RW (July 2006). "Bupropion augmentation in the treatment of chronic fatigue syndrome with coexistent major depression episode". Pharmacopsychiatry 39 (4): 152–4. doi:10.1055/s-2006-946706. PMID 16871471. Only a letter about 1 case history.[9] Ward20 (talk) 15:45, 18 July 2009 (UTC)

Good. RetroS1mone talk 04:17, 19 July 2009 (UTC)

GET "edit warring"

RetroS1mone claims I'm trying to "pretend" that there is no evidence for GET. First of all, there is obviously some "evidence" for GET, so I added the two systematic reviews on the subject. I even stated in my edit summary that the research on GET should be expanded. These reviews are not only the source for the statement that GET "may" be effective for "some" patients, but also the statement on the limitations of the evidence and the generalizability of the findings. Please don't "pretend" that the research is without major flaws, the reviews even imply that the evidence is generally poor. It's also an important and serious fact that severely affected patients have not been adequately studied (if at all), especially if they are the ones protesting the most about these treatments. Patient surveys deserve a mention at least on grounds of being a "significant minority opinion".

I don't understand why RetroS1mone has such a problem with caveats for the psychological and behavioural research, especially when these are coming from the same secondary sources she uses. I hope that the strengths and weaknesses of the research is known regardless of what type of research it is; I would not want any important caveats about biological research missing either. Is RetroS1mone supportive of biological caveats but wanting to censor any weaknesses in the psychological and behavioural approaches? Just like the CBT saga, RetroS1mone's primary motivation for the resistance of caveats appears to be a mere speculation that people are "trying to make it look bad". Ward20 makes a good point, that "caveats are appropriate to understand the limitations of studies, that's why author's include them". - Tekaphor (TALK) 03:59, 11 August 2009 (UTC)

WP:WEIGHT, when humongous study goes into 1 sentence on Wiki and you put 3 sentence on caveats from like a paragraph in study, that is editorail POV, sorry. RetroS1mone talk 12:50, 11 August 2009 (UTC)

That's not POV at all, that's the way I would expect any study to be listed when cited! If there are significant caveats to a study, either mentioned by the author or by others, those should be mentioned whenever discussing the conclusions of that study, even moreso if those caveats are mentioned in the conclusion itself. --RobinHood70 (talk) 18:39, 11 August 2009 (UTC)

OK my view point is, there is how many studies in this article, all studies have caveats and things in conclusion, discussion, people are putting sentences about caveats beside one sentence about total study. Why some studies get selected for this, others are not. RetroS1mone talk 03:44, 12 August 2009 (UTC)

As you know, I rarely ever add new content, so I can only speculate, but I suspect it may be because some caveats are more obvious or affect fewer people, so they're not included. For example, if we say "asprin works to relieve pain", we don't need to discuss broken bones, cuz obviously aspirin's not going to significantly work on something that painful, and we wouldn't normally discuss the rare possibility of Reye's syndrome, either (or at least I gather it's rare...looks like that Wiki page could use some work). Like I say, that's only a guess. Certainly if there are significant caveats to any particular study, I think we should be including them. In fact, I wouldn't be surprised if there's some guideline somewhere to that effect, though I'm not about to go searching for it. --RobinHood70 (talk) 04:21, 12 August 2009 (UTC)

RetroS1mone, "WP:WEIGHT" does not justify the wholesale removal of information. You did not listen to what I said above: "I even stated in my edit summary that the research on GET should be expanded". Instead, you just deleted everything and made accusations. You try to dismiss the caveats as "from like a paragraph in study", but these reviews contain many caveats attached to the seemingly positive findings, ones which describe the specific limitations/problems with the evidence or the effects becoming non-significant. - Tekaphor (TALK) 07:11, 12 August 2009 (UTC)

Another UK survey reporting little benefit and many adverse effects from GET, cited in the BMJ rapid responses: ME Association survey results. ME Essential Magazine. February 2009 Sam Weller (talk) 17:21, 16 August 2009 (UTC)

Pacing

I've edited the section on pacing, which covers the different approaches, a little history, gives information which permit people to udnerstand what pacing actually entails (it's simple really), and cites references, though I made errors and spend too long trying to correct them burning dinner. The HPU is peer reviewed and available online. —Preceding unsigned comment added by Ellengoudsmit (talk • contribs) 11:36, 1 September 2009 (UTC)

You cited Jason 2009 PMID 19356884 as an RCT, but Pubmed doesn't suggest that it is. Is the publication accessible? Sam Weller (talk) 09:04, 2 September 2009 (UTC)

Yes, it is a RCT, or rather part of the results of the RCT. the RCT, published in 2007, resulted in several papers on differetn aspects of the results, including predictors of good outcome (pacing), and poor outcome (immune abnormalities). I see my whole section, which is authoritative, ahs been removed. So i'm an honest scientists with some integrity, and people remove my accurate information without comment, leaving nonsense.

I have copies of all papers I listed but PEC is online and not too expensive. I think I'll leave you to psychologise this condition as someoen obviously has no interest in accuracy and rigour. Ellen Goudsmit —Preceding unsigned comment added by Ellengoudsmit (talk • contribs) 13:54, 8 September 2009 (UTC)

Can you give the references to this RCT from 2007? Has it been included in any systematic reviews? And what is PEC? Thanks, Sam Weller (talk) 14:13, 8 September 2009 (UTC)

OK, I think you mean Jason's "Non-pharmacologic Interventions for CFS: A Randomized Trial" J Clin Psychol Med Settings (2007) 14:275–296. Published November 2007, so too new to be caught by Malouff's review (which only searched 2 (!) databases, can you believe?). It's an interesting randomized comparison of 4 therapies, and I see no reason not to include it. Shame that Friedberg's "cognitive" + pacing intervention overlapped with CBT, according to the authors. And PEC is your recent trial, which I have now downloaded. Thanks, Sam Weller (talk) 19:16, 8 September 2009 (UTC)

A couple questions

Concerning the section Chronic_fatigue_syndrome_treatment#Cognitive_behavioral_therapy, these two sentences seem to be saying the same thing in different places from the same source: "CBT is not necessarily a cure for CFS, but according to The Lancet it can result in improvements in about 70% of patients.[3]", and "Though unable to cure, by their definition, all patients, they did note that some studies showed improvements in as many as 70% of patients, with significant improvements or recovery persisting up to the five year follow-up in two studies.

Also in the same section, where does the content in italics in this sentence come from? I can't find it in the reference. This treatment can only work if patients agree to it, and the Cochrane review acknowledges the "understandable ambivalence" of individuals with CFS towards accepting a psychological treatment for their physical symptoms.[6] Ward20 (talk) 01:38, 18 October 2009 (UTC)

EFAs / Horrobin

You can't reference a book written by the author of the study. If the study hasn't been published in a peer-reviewed medical journal, it isn't a reliable source. Note that this book isn't a "textbook" - it is just a book written by the author of the study. Why wasn't the study published in a journal. --sciencewatcher (talk) 15:00, 19 October 2009 (UTC)

Incorrect the EFA trial's Authors were Peter Behan and Wilhelmina Behan of the dept. of neurology University of Glascow. The publisher is Wiley Liss, It was not uncommon in that era for papers to be published in medical books devoted to the subject as in this case. This book is not written by the 'author of the study' as a primary ref Medrs says peer or editorial review acceptable. One ot the additional ref's I have added is a review of that trial in another standard book on the PVFS again the book is not written by the author of the study. The Canadian guideline paper reviews all of these plus the warren paper. I have included the primary papers to clarify the confusion.Jagra (talk) 08:30, 20 October 2009 (UTC)

Oops correction, the book review that I added (plus the primary paper)confirms the Behan/Behan trial which it reviews but is not the fourth ref. in the Canadian review. That paper is about the antiviral effects of essential fatty acids, and is not included in our Article. Jagra (talk) 06:00, 21 October 2009 (UTC)

So when it says in the article "two RCTs" do you mean it is actually just one? That the Horrobin book is the same as the Behan ref? We really don't need all those other refs for the same thing (Canadian guidelines, etc). If you could just get rid of them all and leave just the trial ref(s) that would be great. --sciencewatcher (talk) 15:30, 21 October 2009 (UTC)

No, there are still three different trials published, all reviewed in the Canadian guidelines. So I have left the trial ref's and the two reviews, to show NPOV I can't see what ref 5 has to do with this and if it is only repeating the Reid review, likewise it should be deleted.Jagra (talk) 07:14, 22 October 2009 (UTC)

I've made some changes to the EFA section. Jagra seems to be twisting the evidence to try to show that EFAs are effective, when actually there have only been 2 reliable trials: the first showed some effect, and the second trial tried to replicate it and showed no effect. --sciencewatcher (talk) 15:44, 3 November 2009 (UTC)

Well now, all I am doing is using the sources, If you have evidence of otherwise then provide it now and cease the personal attacks. Our job is to faithfully edit according to the sources, it is not your job to peer review the articles. A reliable source says that there have been 3 trials, I have copies of those papers, and have provided the references. If you have alternative information then you are entitled to contrast that, but not to attack others who views seem to differ to your POV. As to your opinion above I note it differs markedly to what the systemic review I cited says. PMID 11560542 says of the EFA trial Two good-quality RCTs of essential fatty acids reported some beneficial effects of the intervention and 1 also found an overall beneficial effect. Which supports my edit, no 'twisting the evidence' here. A bit different to your "some effect and no effect" You have also removed caveats that show doubts on whether the Warren trial actually attempted to replicate the work. Thats POV. Jagra (talk) 06:18, 12 November 2009 (UTC)

The point made is that the systematic review found there was ‘some benefit’ to patients in the Warren trial. This is not bias or semantics but science. Another review PMID 16935966 on assessing the Warren data found considerably lower n-3 fatty acid levels in patients (viz before treatment). Warren’s own Results says after treatment “there was a significant difference in ALA (n-3 fatty acid) between treatment and control groups” and “symptom scores for both groups did improve with time and the placebo group more than the treatment group” “However the question remains whether sunflower oil has therapeutic effects of its own”. As the Warren paper shows this oil contains both n-6 and n-3 EFA’s, an unlikely placebo. The systematic review gets it right on the evidence.

The Caruthers paper text is a systematic review and consensus document by many including well known CFS researchers. Not all links always function or are truncated such as this one so regarding EFA treatments on pages 65/66 it describes three RCT studies and says essentially; In the first placebo controlled study of EFA deficient PVFS patients 63 were given Efamol marine for 3 months. Of the patients in the study 84% on active treatment vs 18% on placebo reported improvements in symptoms and their EFA levels returned to normal in patients that responded but not others. (The cited paper used paraffin oil as placebo.) Then says, in a double blind placebo controlled study of 70 patients with PVFS given Efamol marine for 15 weeks 85% on active treatment vs 17% on placebo responded and showed improvements. Patients on active treatment also reported less cardiac palpitations and tachycardia episodes. (The placebo used in this different cited study was olive oil.) It also says, “In a later study by Warren symptoms generally improved---“. (The placebo in this cited study used sunflower oil.) and concludes “Further investigation is warranted”

This review is the reference cited by me at the end of the paragraph containing this summary. “There have been 3 RCT’s of EFA’s in CFS. Two on a subgroup found overall benefit and one found some improvement”.

As I said elsewhere I have summarised the reviews in my edit and I do not consider your allegation of twisting the evidence stacks up in any sense. I agree several other reviews only identified two studies, but this likely has more to do with their limited search methodology. You can contrast that fact if you want. I think there is sufficient material to have another go at the edit, with further caveats.Jagra (talk) 05:16, 13 November 2009 (UTC)

'Small' trials

I don't beleive there is any specific number of patients that can be used to seperate small trials from other trials. The calculation of the sample size is quite complex and varies with the study design type, acceptance reference, and the required power or confidence level needed. A small study is often conducted not just as a preliminary study of the hypotheses (treatment) but also to determine the parameters for a wider study. If a small trial produces a positive result that can mean the small sample size is adequate and therefore the result 'counts' However if a small trial produces a negative result that does not necessarily mean that the hypotheses fails because it may just be that the sample size is too small. So negative small trials do not necessarily counter small positive ones but a large negative one could, everything else being equal. In summary the desired sample size to determine a significant result can be calculated. A larger trial then is one at the calculated sample size. A small trial is often one at an estimated sample size to provide parameters. Just as systematic reviews do, small trials should be included in this Article and be labelled as small. Past practice on this Article has been to include only Random Controlled Trials RCT's only to reduce the number of entries, systematic reviews may however also include controlled but not randomised trials. Jagra (talk) 06:00, 21 October 2009 (UTC)

Thanks for the explanation Jagra, a cutoff point depends on methodology, even a very large study of thousands of patients would become useless if measures and diagnostic criteria were poor (*cough*). According to the PACE trial identifier [10] published in 2007, all the CBT/GET trials so far have been "small". - Tekaphor (TALK) 07:07, 21 October 2009 (UTC)

I agree we shouldn't just include large RCTs, but we do need to be careful what we include. There are literally thousands of low quality trials for dubious CFS treatments and we shouldn't include them all. If there is just one small (e.g. 10 people) trial, I would say not to include it. Whereas things that have been the subject of a number of trials with some positive results, such as EFAs and antiviral treatments should go in even though at present the evidence is inconclusive. Thinking of the immunoglobulin trials in JAMA: even though the largest trial showed negative results and the treatment is therefore likely to not work, they still mentioned it. We should probably do the same, as it gives people information on what has been tested and found to not work rather than people saying that we are hiding the biomedical trials and only putting CBT into the article. --sciencewatcher (talk) 15:26, 21 October 2009 (UTC)

Small Rct's that show benefit even if not conclusive should be included and all 'small' trials labelled accordingly sometimes the authors labell them other times it is found in reviews. Jagra (talk) 06:09, 22 October 2009 (UTC)

Enterovirus infections

The material, "The results of antiviral treatments have also provided supportive evidence for the role of viral RNA in CFS. PMID 16254097" was removed with the explanation, "subsequent research (PMID 16943351) shows the enterovirus infections are very common in the general population)"

However PMID 16943351 supports the material HEV may be implicated in subsets of CFS. PMID 16943351 full text states, "HEV may also be implicated in the pathogeneses of severe chronic diseases, including type 1 diabetes mellitus (33), myocarditis and congestive cardiomyopathy (20), and neuromuscular diseases (PMID 16254097)." Ward20 (talk) 16:31, 3 November 2009 (UTC)

I just don't think the reference supports the text. Is this even a reliable source? CEI Research Center? What is the actual evidence showing the role of viral RNA in CFS? --sciencewatcher (talk) 17:04, 3 November 2009 (UTC)

Yes on all counts. Full text of article ( which is a review) supports material very well. Article is well cited by 33 since 2005. Chia JK well published in infectious disease topics, enterovirus and ME/CFS. Ward20 (talk) 17:28, 3 November 2009 (UTC)

Thanks. If you read the full-text you'll see that first, the anti-viral treatments were done by Chia himself so it isn't a secondary source, and second they were just on a few patients with no control. --sciencewatcher (talk) 18:49, 3 November 2009 (UTC)

On that basis I have removed the Reid et al reference as i find that both Chalder and Wessely on multiple occassions review there own work in this paper, so it is not a true secondary source. Jagra (talk) 05:06, 12 November 2009 (UTC)

Sorry, Jagra, but I reverted that. Per MEDRS, primary sources are allowable if they directly refute the position of another secondary source. I don't think the treatments page should show only positive reviews of the various suggested treatments; wherever possible, we should show those papers, even if they're primary, that call the treatments into question. As mentioned on the CFS talk page, treatments are dubious and we need to show that. It'd be great if we could get better secondary sources, but I think it's a better choice to show balance than to eradicate both the source and the information it presents. —RobinHood70 ^{(talk • contribs)} 05:32, 12 November 2009 (UTC)

Agree in principle, but in this case the 'primary source' is not refuting another review but maquarading as the only review! So how is that different to Chia above given that he reviews other work apart from his own? Jagra (talk) 06:32, 12 November 2009 (UTC)

I never said it wasn't a review. I only said that that particular statement was not a secondary source, i.e. a different person reporting it. --sciencewatcher (talk) 16:48, 12 November 2009 (UTC)

IGG

The text of the systematic review you cite says ; Five RCTs assessed the effects of immunoglobulin; and gives citations and results. The table of studies shows four RCT’s for Immunoglobulin (g) and one for Gamma–globulin (same thing) Yet you say four on what basis do you revert yet again. ? Jagra (talk) 05:26, 13 November 2009 (UTC)

Oops, I was looking at completely the wrong review! Fixed. --sciencewatcher (talk) 15:31, 13 November 2009 (UTC)

Carnitine and GET

I think the Plioplys trial should be reinstated as it is the same comparative design as Fulcher and White on GET PMID 9180065 neither used placebo. Alternatively the number of GET trials should be amended? My own view is both qualify for mention. Jagra (talk) 04:46, 17 November 2009 (UTC)

NADH

The systematic reviews do not rate the NADH trial as poor but rather as ‘’reasonable quality’’(score above 10) so I have removed the subjective term. As to reference 6 neither i nor the reader could have any idea what this reference is and it should be fixed or removed.Jagra (talk) 04:46, 17 November 2009 (UTC)

What's the problem with ref 6? That is the conclusion of the BMJ clinical evidence, which is the most reliable source out there. If you need the full text, let me know. --sciencewatcher (talk) 15:28, 17 November 2009 (UTC)

The reference listing does not identify the Article name, authors, publication date, issue number, page etc that would enable a reader to do or have done, a library search, (after printing off the page ) When the link is clicked the login page provides no detail to identify the Article either, I don't think we can assume the reader has electronic access, and not provide alternatives? Jagra (talk) 05:37, 18 November 2009 (UTC)

EFAs again

I have reverted Jagra's change to the EFA section because there were some major problems with it:

[1] He said there were 3 trials, but all the reviews (JAMA, BMJ) show only 2. Canadian case definition is not a reliable source for this. [2] He says it is beneficial, but if you look at the trials that is not the case. The Behan trial showed a benefit, but when Warren tried to replicate it he found no significant benefit. --sciencewatcher (talk) 22:38, 18 November 2009 (UTC)

This has already been discussed at some length above. Not all the reviews cite only two studies. Google scholar shows the Carruthers paper has been cited 117 times in the literature. Further we cite it on the main article. Sw you can't claim one part is reliable but another not as that is attempted peer review by you, unless you can find a source that says the same. You also cannot ignore the systematic review that say some benefit to patients from the Warren trial. You are also selectively quoting the Warren paper when you say it found no significant benefit, when the paper also says they found significant changes, it is the systematic review that say some benefit to patients. The best I can suggest is to show both views and have ammended the edit accordingly. Jagra (talk) 07:18, 19 November 2009 (UTC)

The Carruthers paper is not a systematic review, and it's not even published in a reliable source. It might be fine for discussing the Canadian criteria, but the BMJ and JAMA are the sources we should be using here. Now comparing those 2 reviews JAMA does say that there is some benefit whereas BMJ says none. But if you actually look at the RCTs you will see that BMJ is correct. Warren shows benefit, but no significant benefit compared with placebo, i.e. no benefit.

The BMJ clinical evidence appears to be the most reliable review source, so in line with MEDRS that is the source we should be using. It is the most recent, and it analyses the JAMA review and points out flaws. It also points out some issues with both RCTs: the first used a poorly tolerated placebo and the second used sunflower oil which could have had a clinical effect, so we can mention these as well if you like (and that further erodes the evidence for EFAs, because essentially neither trial can be trusted!) --sciencewatcher (talk) 15:22, 19 November 2009 (UTC)

GET

re: article text "Patient organisations' surveys commonly report adverse effects." The data are more clearly expressed as "Patient organizations' surveys report adverse effects are common." This is because every survey has reported a significant percentage of adverse effects. In the extant text 'commonly' modifies surveys when it more accurately modifies 'adverse effects.' JustinReilly (talk) 18:56, 19 February 2010 (UTC) The over all feel of the phrase is, I feel, a little misleading in part because people are used to a litany of 'adverse effects' being listed on medication commercials even though some of them are rare. The phrase here sounds like its saying some, BUT NOT ALL, surveys have people reporting adverse effects. With each survey covering hundreds to thousands of patients, the implication that some surveys do not report any adverse effects in turn misleadingly implies they are rare. My edit was reverted back. What is the reason? JustinReilly (talk) 01:29, 20 February 2010 (UTC)

Mitochondria

CFS may sometimes be caused by malfunctioning of the Mitochondria inside most or all of the body's cells. Mitochondria are the chief source of energy (in the form of ADP and ATP) for the entire body. Why are treatments for mitochondrial hypoactivity not included in the article? David Spector 05:32, 7 March 2010 (UTC)

Here are the reviews from searching chronic fatigue syndrome and mitochondria on PubMed. I don't think anyone has found anything definitive.

Medication-induced mitochondrial damage and disease. Neustadt J, Pieczenik SR. Mol Nutr Food Res. 2008 Jul;52(7):780-8. Review. PMID 18626887

Metabolic syndrome and mitochondrial function: molecular replacement and antioxidant supplements to prevent membrane peroxidation and restore mitochondrial function. Nicolson GL. J Cell Biochem. 2007 Apr 15;100(6):1352-69. Review. PMID 17243117

Mitochondrial dysfunction and molecular pathways of disease. Pieczenik SR, Neustadt J. Exp Mol Pathol. 2007 Aug;83(1):84-92. Epub 2007 Jan 18. Review. PMID 17239370

Use of exercise for treatment of chronic fatigue syndrome. McCully KK, Sisto SA, Natelson BH. Sports Med. 1996 Jan;21(1):35-48. Review. PMID 8771284

Chronic fatigue syndrome--a review of the literature Hamre HJ. Tidsskr Nor Laegeforen. 1995 Oct 10;115(24):3042-5. Review. Norwegian. PMID 7570537

Postviral fatigue syndrome Haukenes G, Aarli JA. Tidsskr Nor Laegeforen. 1995 Oct 10;115(24):3017-22. Review. Norwegian. PMID 7570529

Enteroviruses and postviral fatigue syndrome. Behan PO, Behan WM, Gow JW, Cavanagh H, Gillespie S. Ciba Found Symp. 1993;173:146-54; discussion 154-9. Review. PMID 8387908

Primary fibromyalgia syndrome and myofascial pain syndrome: clinical features and muscle pathology. Yunus MB, Kalyan-Raman UP, Kalyan-Raman K. Arch Phys Med Rehabil. 1988 Jun;69(6):451-4. Review. PMID 3288173

Ward20 (talk) 06:39, 7 March 2010 (UTC)

Hormones

I've added a "citation needed" flag to the reference to thyroid hormones as all of the section content and referenced papers discuss the use of cortisol and fludrocortisone. I also removed the redundant sub-heading. -- TerryE (talk) 11:36, 20 March 2010 (UTC)

Lerner / Maes+Twisk

I have again reverted this edit because it fails MEDRS for the following reasons:

- www.cfsviraltreatment.com is not a MEDRS

- Maes+Twisk only has one citation and is therefore not a reliable secondary source

- even if you wanted to include an individual paper of Lerner (e.g. PMID 18019402), it only has 16 citations and is a poor quality small trial. Admittedly we do include Strauss' small acyclovir trial, but it has 161 citations and is included in a high quality review. I see no benefit of including Lerner's study when we already have Strauss' higher quality, more cited study in the treatment article. --sciencewatcher (talk) 19:31, 18 April 2010 (UTC)

once again SCIENCEWATCHER has undone my edit without giving specifically WHY it fails MEDRS, also the study he has "allowed" is specifically about acyclovir rather than VALAcyclovir so not allowing Lerner becuase there is already a paper of the same type is illogical Goldstein123 (talk) 19:41, 18 April 2010 (UTC) —Preceding unsigned comment added by Goldstein123 (talk • contribs)

See above for the reasons why it fails medrs. Also I forgot to add: Lerner's studies also fail MEDRS because they are primary sources. We should only be including high quality secondary sources in the article except in certain special circumstances. --sciencewatcher (talk) 19:53, 18 April 2010 (UTC)

sciencewatcher seems the only editor who thinks lerner and twisk and maes are unallowed, I just cant understand this when they were happy to see some of the very poorly carried out xmrv studies in plos ONE etc allowed...surely they are primary sources too? and anyway lerner is published in third party journals....journals of a higher quality than PLOS one, I find it odd that science watcher is continually blocking things, it seems totally against the ethos of wikipedia, we are supposed to be proving all sides of the arguemnet on the page, not just a one sided page of what a handful of editors think is ok, we are not editing a scientific journal, and not all of us will be scientists anyway...lets remember that Goldstein123 (talk) 19:57, 18 April 2010 (UTC)

Sciencewatcher's reasoning seems pretty sound to me. JamesBWatson (talk) 20:25, 18 April 2010 (UTC)

Goldstein123: The XMRV studies would normally NOT be included in wikipedia because as you say they are primary sources. The only reason they were included was because of the huge publicity that the Science article generated. If you look back at the XMRV and CFS talk pages you'll see a lot of discussion about this. --sciencewatcher (talk) 20:47, 18 April 2010 (UTC)

@G123, Wikipedia is wary of WP:RECENTISM. It's not that this work isn't allowed; it's more a case of should it be allowed yet. A good test of the significance of primary research is its reference by secondary and tertiary material. I personally rate some other instances of primary research that I think are important to CFS patients and the associated cannon of knowledge, but I know that under Wikipedia criteria they will not survive introduction, so I don't even try. In this respect sw's council on the CFS talk page is correct. You need to propose credible arguments for its inclusion, not on your opinions, but on those of secondary reviewers and acknowledged domain experts. -- TerryE (talk) 22:30, 18 April 2010 (UTC)

@terry I dont understand why the original journals are not enough, as it was enough for the original journal editors so i dont see why wikipedia would be stricter, we are surely supposed to supply a balanced viewpoint and let the public decide on the relevent quality when the read the page and check the citations, but if you want secondary sources here is an example http://www.masscfids.org/research/43 Goldstein123 (talk) 23:29, 18 April 2010 (UTC)

Because for some topics, CFS included, there are thousands of studies / papers that are directly or indirectly related to the topic. How do the editors prioritise and pick out what to say? Many papers are published and are like pebbles dropped into a pond. They case a few ripples, then drop out of site and are never heard of again. If research is important then it will be picked up and used by other researchers and generate a cluster of related work. Other experts will then take a look across the whole cluster and produce a summary or review comparing and contrasting and drawing out main themes and results which have been repeated my multiple independent research teams. Wikipedia aims to report such "mature" findings hence its focus on secondary and tertiary papers. In general primary papers should only be used to reference specific detail with in this context.

It can take years, if not tens of years, for primary research, to find its way in to clinical treatments available to the general population and therefore directly impacting the general readership. You may have seen for example that sciencewatcher and I spar in a friendly manner about our views on the possible XMRV / CFS associations. XMRV has a very high profile amongst the prostate cancer and CFS patient communities, so the editor community has created a couple of related articles (and these that do draw heavily on primary research as the secondary papers have yet to be published). Where sw and I are totally in agreement is that whatever the final outcome is, it won't be influenced by our views, but on the published evidence; that we are years from any potential impact on patient care, so a little conservatism does not harm in its reporting. In your case, if the L,T & M work is important then it will also start to be referenced in other research and clinical studies given a higher profile in expert comment. This will be the time to consider its inclusion in this article. -- TerryE (talk) 14:34, 19 April 2010 (UTC)

Vitamin B12

I know I've read about treating people with CFS by using Vitamin B12 injections, but I don't see any reliable information here or anywhere else in a quick search discussing effectiveness. Is this something that's considered a quack treatment, a possible treatment, or just a case of mistaking B12 deficiency with CFS? – RobinHood70 ^talk 03:49, 10 December 2010 (UTC)

Seems to be quackery. All trials show that it produces the same result as placebo - more info here. We should probably include some of this info in the article. --sciencewatcher (talk) 15:11, 10 December 2010 (UTC)

I had that impression from the little info I found, but none of it was anywhere near MEDRS quality. I've added a quick blurb and cited the article you mentioned, but I'm seriously out of practice with doing more than just copyediting, so feel free to alter it if you see anything that needs it. – RobinHood70 ^talk 22:21, 10 December 2010 (UTC)

London Criteria

Following on that topic, since the study uses the London criteria in the subgroup analysis, and we mention that as well, it would be good if we could add that to the criteria descriptions. From a quick Google, it looks like a bit of a minefield ([11] [12]) and all the hits I found were non-MEDRS sources. The first mentions that there are multiple online versions, but I wasn't able to find anything definitive. Does anybody have any good sources for what it is...or might be? – RobinHood70 ^talk 21:12, 22 February 2011 (UTC)

Yes, we should probably add it. Here is the reference for the London Criteria used in the PACE trial: "The London criteria. Report on chronic fatigue syndrome (CFS), post viral fatigue syndrome (PVFS) and myalgic encephalomyelitis (ME). Westcare, Bristol: The National Task Force, 1994." Unfortunately I can't find any online versions either. It looks like it was published in a book which is now out of print and unavailable. The best info seems to be here so maybe just give the proper ref and also a link to that page on the ME Association website. --sciencewatcher (talk) 21:45, 22 February 2011 (UTC)

Okay, added here. I didn't add it to Chronic fatigue syndrome, as it doesn't appear to be a "notable" criteria outside of the fact that it was used in the recent PACE trial (and it sounds like another PACE trial in 2004, though I only came across that in passing). I tried to summarize the criteria and took the rest from the Additional Information bullet points immediately beneath the criteria description. I also linked both references to it in this article (since they were so far apart), but haven't checked anywhere else. As always, go nuts if you think there's anything that needs to be changed. – RobinHood70 ^talk 00:43, 23 February 2011 (UTC)

I suggest putting it after the CCC to reduce the weight of it as it is not mentioned in reviews. Ward20 (talk) 19:53, 23 February 2011 (UTC)

I was just putting it in alphabetical order (failing to notice, at the time, that the Canadian criteria isn't). Feel free to move it and/or mention that it's not peer-reviewed. – RobinHood70 ^talk 21:30, 23 February 2011 (UTC)

I moved it to the bottom of the section. Ward20 (talk) 03:17, 24 February 2011 (UTC)

Updated BMJ clinical evidence review of CFS available

It's available here. Does anyone have access to the full text? --sciencewatcher (talk) 23:29, 30 May 2011 (UTC)

Non MEDRS source

Is there a reason a survey from a patient group is cited on the page? Has it been discussed to establish a consensus?

“ A survey of 437 severely affected patients by the 25% ME Group reported that CBT was found helpful to 7% and unhelpful to 93%.[16] ”

Also, the link is dead and should be updated or replaced with one from the internet archive (if people decide to use it). WLU (t) (c) Wikipedia's rules:^simple/_complex 23:54, 27 June 2011 (UTC)

It should probably be re-written to present it in this light, but I think the general idea is to present the fact that the patient community as a whole (especially the subsets of it where neurological and immunological symptoms are predominant) roundly rejects the notion that CBT is meaningfully helpful. By extension, surveys such as the one quoted reflect this. While it may not be MEDRS in and of itself, I think it fairly presents the dichotomy between some doctors' views and those who are actually experiencing the symptoms. To not present this information at all would be pretending like patients agree that CBT is helpful. Many (most?) of us don't, along with several researchers and scientists (as presented here, though this is not a MEDRS source either). I think the citation above was the attempt to present this from a neutral point of view, but in so doing, it perhaps lost a little of the appropriate context. – RobinHood70 ^talk 19:46, 28 June 2011 (UTC)

Rather than presenting a survey as a source, a statement by such an agency should probably be used. It would be clearer, it would present it as a perspective of one group, and it wouldn't attempt to put it on the same par as medical research. Right now it looks like there was survey, which is as good as a medical trials that preceded it. A summarized statement would be better, without the pretence of a methodical research. WLU (t) (c) Wikipedia's rules:^simple/_complex 13:47, 29 June 2011 (UTC)

Just to...errr...not follow up on this ;) I didn't take your advice above for the simple reason that looking at what's already in the original section, as well as the two new ones you just removed, I didn't really feel there was anything that needed to be added. The sections already cover the fact that there are differing views/results by patient organizations. – RobinHood70 ^talk 06:51, 7 July 2011 (UTC)

Management techniques

Hi. I've just started looking through this article.

This final sentence could be misleading:

A systematic review published in 2004 concluded that depression was the only factor associated with unemployment, :and that only cognitive behavior therapy, rehabilitation, and exercise therapy interventions were associated with :restoring the ability to work, although for questions of disability and employment in CFS, the limitations inherent :in the current literature are extensive.[3]

Even though it makes clear the limitations of the current literature, it does give the impression that depression in CFS is associated with unemployment, while disability levels are not, when the review itself shows that there is evidence of association, but that the measures of disability used in CFS, and the papers that use them, suffer from limitations which prevent a firm conclusion. I get the impression that this sentence is intended to 'balance' the one before, but I'm not sure how much useful information it provides. I tried including more detail on the evidence and it's limitations as explained in the review, but it ended up too long unwieldy for such a minor point. I think it would be best to just remove it, but didn't want to do so if it had been a matter of prior debate. Flatronal (talk) 10:08, 12 August 2011 (UTC)

Taking a quick look at this, it looks like we are just presenting the results of 2 reviews - one of which shows that no intervention gets patients back to work, and the other review shows that CBT, GET and rehabilitation do get patients back to work. When there are two reviews showing different results it's important for us to present them both. If we are misrepresenting one of the reviews then certainly we should change the wording, although from a quick perusal it looks like we're presenting a pretty fair summary of the abstract of the review. I haven't read the full-text, but if it does say what you are saying, it might be worth adding another sentence to clarify. --sciencewatcher (talk) 15:28, 12 August 2011 (UTC)

We could just remove the reference to depression, which seems superfluous and potentially misleading, reducing the sentence to "A systematic review published in 2004 concluded that only cognitive behavior therapy, rehabilitation, and exercise therapy interventions were associated with restoring the ability to work, although for questions of disability and employment in CFS, the limitations inherent in the current literature are extensive."

I've pulled out the relevant section from the review... to me, it doesn't sound compelling enough for inclusion, and as the prior sentence only says "none of the interventions had proven to be effective in restoring the ability to work", I'm not sure if there is any real conflict here.

What Is the Evidence That in Individuals With CFS, Treatments Are Effective in Restoring the Ability to Work?

Among the 14 interventional trials with work or impairment results after intervention, there were too few of any single intervention with any specific impairment domain to allow any assessment of association. Only 4 longitudinal studies26-29 reported employment at baseline and follow-up after intervention (Table 6). Two additional studies11, 30 reported employment at both times with no interventions. In the 4 studies with interventions, the percentage of patients with CFS who were employed at baseline ranged from 0% to 39%; at follow-up (3-42 months after baseline), employment ranged from 44% to 53%. Interventions associated with increased employment at follow-up included individualized rehabilitation programs,27, 29 cognitive behavior therapy,26 and exercise therapy.28 The studies are not comparable, however, owing to differences in study design, duration of follow-up, and types of intervention. Furthermore, up to 29% of patients were lost to follow-up. Still, all 4 studies showed improved employment outcomes, whereas the 2 studies11, 30 with no interventions showed worsening of employment outcomes.

If we really wanted to include this review in to balance the prior review, then I'd suggest: "A systematic review published in 2004 found four papers which measured the impact of intervention upon employment levels, all reporting improved employment outcomes." It could just as fairly be condensed to "A systematic review published in 2004 found that there were too few papers on any single intervention with any specific impairment domain to allow any assessment of association" - which would seem to support the prior review.

I'm in favour of taking it out. Flatronal (talk) 12:01, 13 August 2011 (UTC)

I had another look at these studies. The Chambers review is just quoting what Ross says in their comment section: "No specific interventions have been proved to be effective in restoring the ability to work". So really there is no discrepancy. I think the main points are that although 4 studies showed improved employment outcomes, there is insufficient evidence to say that any one treatment can restore the ability to work. I'd suggest just reworking the text to clarify, and maybe removing the bit about depression. If anything we should probably remove the Chambers review and just leave Ross as it gives more detail, and include the comment about no treatment being proven effective in restoring the ability to work. --sciencewatcher (talk) 22:33, 13 August 2011 (UTC)

Okay - I cut it down a bit. I'm not really sure if there needs to be any significant mention of the lack of evidence around 'return to work'. PACE should be providing some new data on this soon, so we could wait for that.Flatronal (talk) 07:56, 14 August 2011 (UTC)

I just added a bit more info from the review about which treatments showed an improvement, and the fact that the 2 studies with no intervention showed worsening outcomes. Yes, hopefully PACE should give some more definitive info. --sciencewatcher (talk) 14:39, 14 August 2011 (UTC)

I just added the info posted above on CBT and GET in to the PACE section. I tried to find a way to integrate it in to the CBT/GET sections, but couldn't find a source to support that claim that these approaches were typical of CBT and GET programmes for CFS, and it sounded clunky when they were presented as only examples from one trial. There are also different approaches that can be taken, so I didn't want to be seen to claim otherwise. While not perfect, I think their inclusion is an improvement. Flatronal (talk) 10:49, 15 August 2011 (UTC)

One other thing - why is Specialist Medical Care reduced to SMT in the PACE section? In PACE and elsewhere it's referred to as SMC. I also think it should be made clearer that PACE compared SMC+CBT and SMC+GET with SMC alone, rather than CBT and GET alone with SMC alone. — Preceding unsigned comment added by Flatronal (talk • contribs) 11:01, 15 August 2011 (UTC)

Just changed it.Flatronal (talk) 11:16, 15 August 2011 (UTC)

It was me who added the PACE info in the first place with "SMT". I had a look at the original refs, and none mention SMT, it is SMC. I think I just got carried away because all the other treatments end in "T". Thanks for fixing. --sciencewatcher (talk) 13:57, 15 August 2011 (UTC)

No probs. There are too many acronyms with CFS - surely they could have called the Chalder Fatigue Scale something else! I think I'm done here. Thanks for the help.Flatronal (talk) 16:09, 15 August 2011 (UTC)

The evidence for CBT/rehabilitation/exercise and employment outcomes is very poor

Regarding the issue of CBT/rehabilitation/exercise "restoring the ability to work", the evidence is very poor. In the full text [13] the authors Ross et al refer us to Table 6 for this information. Akagi et al 2001 for CBT: no control group. Dyck et al 1996 for rehabilitation: I don't know if there was any control group, but the employment outcome was based on only 2 patients (one becoming employed and one remaining not so at followup). Fulcher & White 1997 for exercise therapy: although it was divided into an exercise group vs a flexibility group, and those "working or studying at least part time" went from 39% at baseline for all patients to 66% of those who completed the exercise treatment and12 months followup, this was a cross-over study and this figure does not account for dropouts and does not tell us the % of those who did the flexibility program so is essentially an uncontrolled comparison. Back to the Chambers et al 2006 systematic review, when referring to Ross et al 2004, it states: "Although the authors found some small studies of interventions (including rehabilitation, CBT and graded exercise therapy [GET]) that reported improved employment outcomes, they concluded that no intervention has been proved to be effective in restoring the ability to work." Of course, this does not necessarily mean the reported improvements were because of the interventions, it just means these studies reported improved outcomes. So after considering the poor quality of the evidence for employment outcomes and the fact that the authors of these systematic reviews conclude no intervention have proven to restore the ability to work , I removed the previous Wikipedia sentence and restored the original caveat.[14]

Maybe I was a tad hasty deleting it entirely, so here is the text and wikimarkup of the removed statement citing Ross et al 2004 if anyone wants to use it again after factoring in the above: "While there is little evidence for any one intervention's effectiveness in restoring the ability to work, four papers which measured employment rates before and after different treatment approaches - cognitive behavior therapy, rehabilitation, and exercise therapy - all reported some improvement while two papers with no intervention both showed worse employment outcomes at follow-up." <ref>{{cite journal |author=Ross SD, Estok RP, Frame D, Stone LR, Ludensky V, Levine CB |title=Disability and chronic fatigue syndrome: a focus on function |journal=Arch. Intern. Med. |volume=164 |issue=10 |pages=1098–107 |year=2004 |pmid=15159267 |doi=10.1001/archinte.164.10.1098 |url=http://archinte.ama-assn.org/cgi/reprint/164/10/1098}}</ref> - Tekaphor (TALK) 12:14, 29 October 2011 (UTC)

The following point is already in the article, but just noting here for the above conversation, the PACE trial was larger and better designed than the above studies and showed that CBT and GET have no significant effect on restoring the ability to work at 52 weeks follow up. - Tekaphor (TALK) 04:41, 5 June 2013 (UTC)

Belgian report

@IP 74... a lot of active editors on these pages -- including me -- doubt the efficacy of CBT. However, person opinions must come second to WP:MEDRS rules on validity and weight of resources. We have to wait until the weight of published material supports any proposed content and in this case for reasonable secondary-sourced content in this area. Please have this debate on the talk page where it started. Page hoping content makes everyone's life more difficult. TerryE (talk) 15:51, 17 April 2012 (UTC)

It's not entirely the editor's fault...it was me who suggested that the info would be better on this page IF it is added, but I'm not sure it satisfies MEDRS for the same reasons you give. Feel free to move this talk section into the main CFS talk page if you wish. --sciencewatcher (talk) 20:31, 17 April 2012 (UTC)

I added it back in for the reasons stated on the main CFS talkpage [15]. MEDRS must come second to WP:NPOV. - Tekaphor (TALK) 02:42, 18 April 2012 (UTC)

Sorry, for interfering guys. I missed the suggestion to move the debate and putative content to this talk page, though I was tracking the discussion on the main CFS page. I felt that it then suddenly appeared here without explanation in the talk page or editorial support. I understand Tekaphor's arguement. -- TerryE (talk) 17:03, 22 April 2012 (UTC)

Recent changes

I'm having a lot of difficulty justifying the recent changes.

• The initial change to the first CBT paragraph really just expands on what was already there. Not a big deal to me whether that stays or is reverted.
• In the changes to the next paragraph, I see no reason why the date of the Sharpe study is relevant. Studies on all sides of the issue go back for a decade or more; none are particularly relevant on WP when compared to secondary sources.
• Where do we have support for the "weak" and "strong" hypotheses of CBT? I'm not aware of anything that lends credence to that belief, and in the very next paragraph, it covers low evidence quality for CBT outside of specialist settings, and that overall there are no conclusive improvements from it. It's a huge stretch to say that CFS being completely reversible via CBT is a "strong hypothesis". Having said that, though, I think it's entirely appropriate to outline the fact that there are two different approaches to CBT.

For the time being, I'm reverting all three changes pending further discussion and supporting evidence. – RobinHood70 ^talk 23:19, 14 February 2013 (UTC)

That is directly from the ref (from the book) - it's available free on google books (at least, that page is). When it talks about "weak" and "strong" it's nothing to do with quality of evidence - it's just about whether they believe cognitive factors are weakly or strongly implicated in the etiology. I'm happy enough with the original text, but I decided to change it to this after reading the reference, as it seems to explain the situation more fully. I'd suggest you read that page of the book and see what you think. --sciencewatcher (talk) 23:31, 14 February 2013 (UTC)

I'm not getting previews for any page numbers that high—it cuts out after page 88, except for the back cover. Do you have a link, or can you tell me what you searched on that brought it up? – RobinHood70 ^talk 00:32, 15 February 2013 (UTC)

here is the link. The page is 248, which is in the preview. Just scroll down and you should see it - it jumps a bunch of pages. Note that I changed the page number in the reference. --sciencewatcher (talk) 05:09, 15 February 2013 (UTC)

It must show different pages for different people because it's still cut off after page 88 for me. Even switching to a different browser so it wouldn't have the same cookies, I couldn't see it, though it looked like there it was sort of trying...I could see the outline of the page but it said I'd exceeded my limits for the day. I'll give it another shot tomorrow.

In any event, if you want to put it back to how it was with the book as a ref, I won't dispute it, but I feel I should point out that that book is over 15 years old now. We should probably find something a little more up-to-date as support for those kinds of statements if we can. – RobinHood70 ^talk 06:44, 15 February 2013 (UTC)

Conflating changes in questionnaire scores with changes in fatigue.

Given the difficulty of measuring fatigue in a meaningful manner, I was surprised by the way in which this page spoke of studies finding certain changes in fatigue, without explaining what proxies were being used to measure fatigue.

This causes particular confusion when two different measures show different results, eg:

"A 2010 meta-analysis of trials that measured physical activity before and after CBT showed that although CBT effectively reduced fatigue, activity levels were not improved by CBT and changes in physical activity were not related to changes in fatigue. They conclude that the effect of CBT on fatigue is not mediated by a change in physical activity.[12]"

If patients were significantly less 'fatigued', as the term is generally understood, then this should allow them to increase their activity levels. It seems unsafe to assume that the questionnaires used capture the levels of a patient's fatigue more accurately than objective measures of activity. I would recommend describing what the studies actually found, rather than just assuming that the measures used to assess fatigue accurately did so, eg:

"A 2010 meta-analysis of trials that measured physical activity before and after CBT showed that although CBT effectively reduced patient's fatigue questionnaire scores, activity levels were not improved by CBT and changes in physical activity were not related to changes in fatigue questionnaire scores. They conclude that the effect of CBT on fatigue questionnaire scores is not mediated by a change in physical activity.[12]" — Preceding unsigned comment added by 87.115.106.22 (talk) 03:21, 13 May 2013 (UTC)

We can only conclude the same things the meta-analysis itself concludes. Since they make no mention in the abstract as to how fatigue was assessed (only referring to physical activity being measure by actigraphy), we can't say anything further. If they clarify that in the full study, then it might be something we could look at. – RobinHood70 ^talk 04:27, 13 May 2013 (UTC)

That paper reports using this measure of fatigue:

"The subscale fatigue severity of the Checklist Individual Strength (CIS) was used to indicate the severity of fatigue experienced by patients."

It could be that this example particularly stood out, but generally I think it would be better to report the outcome measures used as proxies for fatigue, rather than writing as if we can be confident that these proxies consistently and accurately reflect a patients level of 'fatigue'. The further we get from the evidence, the more likely it is that errors of thought or misleading assumptions will occur. — Preceding unsigned comment added by 87.115.106.22 (talk) 00:01, 14 May 2013 (UTC)

Something that clearly states that all the studies used the same scale would be better, but I think that's sufficient to warrant changing the article wording. I'll go ahead and do that. – RobinHood70 ^talk 16:27, 15 May 2013 (UTC)

PACE Trial

One small point about the current wording: according to the PACE Trial page, the patients were recruited using the Oxford criteria. It only said they may meet other criteria, which I take to be entirely random chance whether they do or not. We should note that the Oxford criteria were used as the primary patient selection method, since that may in some way skew the patient make-up of the other subgroups. – RobinHood70 ^talk 20:35, 22 February 2011 (UTC)

Thanks, SW. – RobinHood70 ^talk 21:12, 22 February 2011 (UTC)

Malcolm Hooper has now weighed in publicly on the PACE Trial, fairly thoroughly tearing it a new one. His initial response can be found here and then there's a response to a private e-mail here. There are certainly some interesting points in the two that suggest some fairly serious flaws and/or gross assumptions in the PACE Trial's methodology. – RobinHood70 ^talk 03:20, 24 February 2011 (UTC)

Thanks RobinHood70, this reminds me of the recent "XMRV is contamination" press release from the Wellcome Trust. Once you get past the uncritical media hype surrounding the PACE study, the results were unimpressive and a whole bunch of serious flaws have been spotted. I was surprised that the definition of "normal" levels of fatigue and physical functioning are still bad enough to qualify for entry into the PACE trial. Hooper has raised many other interesting points, and it appears that Jameson didn't do his homework before complaining, but obviously a blog can't be used here. I added a permalink to your post above for archival purposes. It is going to take me a while to process the Lancet paper but I will contribute what I can. Does the aftermath qualify for inclusion in the controversy section? - Tekaphor (TALK) 03:59, 27 February 2011 (UTC)

Thanks for the link fix, Tekaphor - due to a screw up by our ISP, we lost our Internet shortly after I posted and only got it back now, so I never noticed the current-link instead of perma-link. – RobinHood70 ^talk 18:49, 1 March 2011 (UTC)

Possibly related to the PACE trial, possibly a more general point: This article could give the impression that CBT can only be used as part of one unified approach for CFS, when a number of different approaches can be taken. eg: CBT in the PACE trial was based upon the fear-avoidance model of CFS, but at the other end, CBT could be used on the assumption that CFS is perpetuated by non-cognitive-behavioural factors, largely outside of the patient's control, but which CBT can still be helpful for managing emotional/behavioural responses, sleep management, anxiety and depression related to illness, etc. My suggestion would be: make the general CBT section more wide-ranging, with an explanation that different approaches and understandings of CFS can be taken by therapists, and then have a more specific section on the CBT approach taken under PACE, which is probably the most significant (and recent) CBT trial for CFS; OR some sub-headings under CBT to briefly explain some of the different approaches that can be taken. Maybe this is expecting too much detail? I'm just worried that 'CBT' is currently talked about like it can only be one thing for CFS, and that may be misleading. Any thoughts from others? Flatronal (talk) 11:08, 7 August 2011 (UTC)

Ideally we should find a source that discusses the various approaches. In the article we reference the book "Chronic Fatigue Syndrome: An Integrative Approach to Evaluation and Treatment" to discuss CBT, but unfortunately this is not available free. I just came across this wikipedia page which lists all the CBT approaches techniques and systems. --sciencewatcher (talk) 16:18, 7 August 2011 (UTC)

Thanks for that wiki link. That complicates things further though. I was reminded about some recent CBT stuff on 'acceptance' and CFS, which is quite different to past approaches. Also though, within those approaches to CBT, they can be applied differently to CFS depending upon the practitioner's understanding of the illness.

There is lack of good, clear and concise sources on CFS that cover all the different approaches that can be taken. Because it's also so complicated, it makes it difficult for us to condense the arguments and ideas of others fairly ourselves. However, I fear that people could read the current section on CBT without really learning anything about what it is, other than 'something psychological'.

Is 'An Integrative Approach to Evaluation and Treatment' a good choice for the primary source here? It is a bit old. I've not read it all, but the Wessely chapter seems to have lots of personality stuff, citing mainly stuff from pre-92 whose findings go against his own later research (other than perhaps a role for perfectionism). Maybe the description of CBT given in the PACE paper could be the basis for a summary of that approach?:

Cognitive behaviour therapy (CBT)

CBT was done on the basis of the fear avoidance theory of

chronic fatigue syndrome. This theory regards chronic fatigue

syndrome as being reversible and that cognitive responses

(fear of engaging in activity) and behavioural responses

(avoidance of activity) are linked and interact with

physiological processes to perpetuate fatigue. The aim of

treatment was to change the behavioural and cognitive

factors assumed to be responsible for perpetuation of the

participant’s symptoms and disability.

This is quite specific though, and may increase the danger of people assuming all CBT for CFS follows this model. Unless we stumble upon a really useful source, it could be a lot of work to try to summarise and make clear the different approaches that can be taken. The prospect of that work triggers my fear-avoidance response. Maybe just a brief note should be added to explain that different approaches to CBT for CFS can be taken?

I'll paste up the PACE description of GET too:

Graded exercise therapy (GET)

GET was done on the basis of deconditioning and exercise

intolerance theories of chronic fatigue syndrome. These

theories assume that the syndrome is perpetuated by

reversible physiological changes of deconditioning and

avoidance of activity. These changes result in the

deconditioning being maintained and an increased

perception of eff ort, leading to further inactivity. The aim of

treatment was to help the participant gradually return to

appropriate physical activities, reverse the deconditioning,

and thereby reduce fatigue and disability.

Sorry for the long comment and the lack of any real progress. I might try adding some more specifics to the PACE section later. edited to cut down the quotes from PACE, and reduce the length of my comment. Flatronal (talk) 18:56, 7 August 2011 (UTC)

(←) the PACE study is fatally flawed. It has so many flaws that it should not be considered a reliable source. I also believe that there should be a rebuttable presumption of invalidity of statements and papers coming from the proven frauds such as Wessely, White, Sharpe, etc., all of whom, I believe are authors on this paper. JustinReilly (talk) 02:12, 27 November 2011 (UTC)

Just because we as patients disagree with these people doesn't make them frauds. In order to discredit their work, we would need reliable sources that indicate that there are problems with it. Same thing goes with the PACE trial itself. Since the Lancet has chosen to dismiss the myriad of objections with mere hand-waving, completely ignoring any kind of rebuttal of the issues raised, and nobody else has seen fit to address the issue, Wikipedians are left with no choice but to publish the results of the PACE trial as reported. – RobinHood70 ^talk 02:37, 27 November 2011 (UTC)

I have a problem with this section: "The trial generated a furious response from patient groups and campaigners. Letters to the editor critiqued the definitions of secondary outcomes, questioned protocol changes, and expressed concern over generalisability of the results. Professor Malcolm Hooper branded the results "unethical and unscientific" and submitted a 442 page response to the Medical Research Council and a shorter 43-page complaint to the Lancet. The MRC and the Lancet have considered the submissions and rejected them. A Lancet editorial conjectured that the strong negative response might be due to the dismay over the debilitating illness, "but also from an active campaign to discredit the research."[35][36]" This section is also present (copied from?) in the Wikipedia page about controversies. I would like it to be removed completely for the following reasons: The text does not make clear that from the start it is all more or less quoted from the -anonymous- Lancet editorial and is therefore an expression of someone's personal opinions. But because of this omission it may well be mistaken for facts by a Wikipedia reader. In the text "letters to the editor" are mentioned, including an explanation of what these letters are supposed to have said (according to the anonymous Lancet editor). This explanation however is not verifiable. Because Wikipedia does not allow using letters to editors as references we can't look them up. Professor Malcolm Hooper is also mentioned with his official complaints. However, we can't check what these complaints are, again, because of Wikipedia regulations the documents can't be referenced or quoted from. The anonymous Lancet editorial, by the way, claims that the 43 page complaint by Hooper is available on Wikipedia (where?). Again we see a personal opinion in the statement that the MRC and The Lancet have "considered" the submissions and rejected them. Is this true? Can we check this? Hooper denies that his complaints were considered before rejection but we can't cite or reference this, once more because of Wikipedia regulations. Finally, the Lancet editorial is mentioned and the presumptions that are made about the "dismay" and the "campaign". Even this is suggestive enough to have a psychological impact on Wikipedia readers and may be read as facts, rather than opinions. So, as long as it is not clear what the facts are, who wrote what, who is in fact the author of the editorial, and it is not possible to use references for the issues mentioned, I think it should go, in both Wikipedia pages. Does anyone disagree with this? Saflieni (talk) 19:14, 2 May 2014 (UTC)

I believe it will be better to make to make the paragraph more neutral. The whole incident had a lot of news coverage from secondary sources not cited in this paragraph so it is notable.

Proposal for more neutral wording:

The trial generated a swift response from patient groups and campaigners. Letters to the editor critiqued the definitions of secondary outcomes, questioned protocol changes, and expressed concern over generalisability of the results. Professor Malcolm Hooper branded the results "unethical and unscientific" and submitted a 442 page response to the Medical Research Council and a shorter 43-page complaint to the Lancet. The MRC and the Lancet considered the submissions but rejected them. [35][36]

The changes are to remove "furious" as a judgmental term and to remove the reporter's editorial "conjecture" statement as having insufficient weight to be included in the Chronic fatigue syndrome treatment article. Changes to the identical section in the Controversies related to chronic fatigue syndrome article should be discussed there as the context of that article is different. Ward20 (talk) 21:03, 2 May 2014 (UTC)

I'm not sure that's a good idea. The response clearly was furious, and it is very notable. If you want another source, use Charles Shepherd, who talked about "anger and frustration" of patients (in the "Dangers of research into chronic fatigue syndrome" article). In fact we already have Lancet and BMJ sources for this, so I don't see an issue. Saflieni appears to be a bit unclear about how wikipedia's sourcing works. --sciencewatcher (talk) 23:09, 2 May 2014 (UTC)

Sciencewatcher and I already discussed this on his own talk page. He is missing the point: we are not robots who are supposed to apply rules without thinking. To pretend that a source is valid only because The Lancet or BMJ prints it, without any consideration for content and context, is not wise, especially when it concerns the personal opinions of editors and journalists. This gets very close to the 'ad verecundiam' fallacy any encyclopedia should avoid. Anyway, "Dangers of research into chronic fatigue syndrome" by Nigel Hawke is already referenced. The problem is that this page is about treatments and it does not really address the key problems with the PACE trial. Central to the controversy are not the frustrations of a few crazy people, like the two referenced opinions want us to believe, but problems with the science of the study. I have already explained to Sciencewatcher the issue of changing the parameters during the PACE trial to inflate the figures for "recovery". Professor Hooper points this out in his reply to a letter by White: "It cannot be acceptable to describe PACE participants as having “normal” levels of fatigue and physical function when they could simultaneously be sufficiently disabled -- as judged by their levels of fatigue and physical function -- to have qualified for entry into the PACE Trial in the first place." Dr Shepherd wrote a similar comment that was printed in Psychological Medicine in 2013 as a letter to the editor. And this is just one of many such issues. I can live with the suggestion of Ward20, but would still like the claim 'considered' to be removed, as it is disputed by Hooper and we can't cite that. Saflieni (talk) 08:13, 3 May 2014 (UTC)

It's pretty obvious that the trial generated a furious response from very many activists - you just need to look at the forums for that. We have two sources, including a very non-anonymous Charles Shepherd quoted in the reference we already have in the article.

As for the 65-to-60 issue, if you can find a more reliable source, put it in (based on weight). It looks like the Lancet didn't think it was relevant. I asked you that you should perhaps investigate the reasons why that is the case. Just because all the CFS activists are currently bleating about it, doesn't mean they are right and the Lancet is wrong. --sciencewatcher (talk) 14:52, 3 May 2014 (UTC)

A large number of scientists have addressed the 65-60 issue, along with other issues, from the start 3 years ago. I have mentioned two. It is not very respectful of Sciencewatcher to qualify comments by respected experts as 'bleating'. Besides, it's not a big secret, you can look it up yourself in the 2011 paper. The Lancet itself is not impartial in this controversy, as these issues are all signs of flaws in the peer reviewing process for the publication. The Lancet is not a flawless machine. It's people at work who, just like anywhere else, are capable of mistakes, bias and cognitive dissonance. It is not for Wikipedia to take sides here or judge the value of personal opinions of individuals, whether they are editing magazines or employed elsewhere. Wikipedia should represent the facts as neutral as possible. Besides, the responses of activists should not be mixed up with the comments made by experts. Those are separate issues. Saflieni (talk) 21:00, 3 May 2014 (UTC)

The problem with your 'experts' is that they tend to push crappy science (XMRV even after negative studies, or mould even though there is zero evidence) and then they badmouth good science that doesn't fit their preconceived ideas. I'm not saying PACE is perfect - it does have flaws. However it's much better science than XMRV or mould. Some of the 'experts' are worse than others. Anyway, as I said, feel free to put it into the article if you can find a good source. --sciencewatcher (talk) 21:17, 3 May 2014 (UTC)

Now you're just babbling and drifting off topic. If Sciencewatcher is unwilling to address my arguments he should take a step back and allow serious editors to weigh in here. Wikipedia was not created for judgmental people to push their private opinions. I still believe Ward20 offers the best solution. Saflieni (talk) 21:52, 3 May 2014 (UTC)

Even though this is off topic, I would like to add that the two experts I mentioned by name acknowledged the negative results of XMRV in public in 2011, even to the BBC, and again in 2012 after the Lipkin study. Dr Shepherd was himself harassed by some disappointed people. None of the scientists I refer to who critiqued the PACE papers fit the description Sciencewatcher offers. I suggest he spends some time reading the original papers by White et al and the comments by others that were published in The Lancet, Psychological Medicine and other media to get a better understanding of the subject. Saflieni (talk) 23:06, 3 May 2014 (UTC)

Sciencewatcher distinguishes between the reliability of sources of, on the one hand, an editorial opinion (anonymous) and a column summing up unverified claims to arrive at a preconceived point, and, on the other hand, correspondence by a variety of experts published in the same medical journals. I can't find reason for this distinction in Wikipedia guidelines. Correspondence appears to be a valid source similar to editorials and opinion pieces: "Peer reviewed medical journals are a natural choice as a source for up-to-date medical information in Wikipedia articles. They contain a mixture of primary and secondary sources. Journal articles come in many types, including original research ranging from vast studies to individual case reports, reviews, editorials and op-ed pieces, advocacy pieces, speculation, book reviews, letters to the editor and other forms of commentary or correspondence, biographies, and eulogies." (MEDRS) I was invited to investigate the reasons for specific protocol changes during the PACE trial. I re-read the replies written by White in The Lancet (2011) and BMJ (2013). These are also letters to editors and would therefore be deemed 'unreliable' according to Sciencewatcher. However, neither of the letters by White provide an answer to the specific points of criticism, such as the 65-60 issue. Some other reminders from Wikipedia guidelines and policy: "It is a generally accepted standard that editors should attempt to follow [content guidelines], though it is best treated with common sense, and occasional exceptions may apply." "Avoid stating opinions as facts." "Editing from a neutral point of view (NPOV) means representing fairly, proportionately, and, as far as possible, without bias, all of the significant views that have been published by reliable sources on a topic." "The tone of Wikipedia articles should be impartial, neither endorsing nor rejecting a particular point of view. Try not to quote directly from participants engaged in a heated dispute; instead, summarize and present the arguments in an impartial tone." "Passages open to multiple interpretations should be precisely cited or avoided." Saflieni (talk) 10:57, 4 May 2014 (UTC) I agree with your above point entirely Saflieni, there is a lack of Neutral point of view in this page that must be addressed (along with the main one. --Leopardtail (talk) 00:21, 11 May 2014 (UTC)

Last set of arguments from me: To put things in perspective on the 'furious response' bit, I came across an article by Simon Wessely in The Spectator (27 august 2011) where he does the same. I quote: "OK, let’s keep a sense of proportion. It’s only a small number of people who do this." I also came across some serious verbal abuse directed at Ellen Goudsmit and another few of 'my experts' as Sciencewatcher calls them. I agree it is notable, but still think it is over-emphasized. And there is no clear distinction between the "campaigners" and the experts whose comments on the science of the trial were published in The Lancet, Psychological Medicine and BMJ. I believe Wikipedia should include a short summary of the experts' arguments rather than quote an opinion about those letters without the proper attribution. I guess I'll wait a few days for editors to read all my arguments and respond before I'll enter suggested changes. Saflieni (talk) 17:29, 4 May 2014 (UTC)

You seem to conveniently missed all the bits of the wikipedia policies that talk about weight. That is what 'proportionately' means. It doesn't mean that we present all viewpoints according to how loudly they shout. Instead it means we give them space according to their quality. Read through 'Due and undue weight' in the NPOV page, and also 'assessing evidence quality' in MEDRS. If it was included we would probably have to say that 'xxx wrote a letter to the editor pointing out...', basically showing that it was that person's opinion. Also we would have to give the authors' response. IMO that would be a weight violation, and a waste of space. If people are interested they can easily find the letters to the editor and read them themselves. However if the consensus is that we should include them, then go ahead. --sciencewatcher (talk) 18:01, 4 May 2014 (UTC)

I can't continue to repeat the same arguments if you refuse to read or address them. One last time: A personal opinion by an anonymous editor, or a news article voicing claims that went unchecked, are not evidence, nor facts, and should not be included as such. You can attribute them to the individuals whose opinions they are. If you wish to mention a controversy, you have to describe the viewpoints of both sides. We're not talking about opinions of individual campaigners, but very specific comments on the content of a scientific study by a substantial number of experts, many of them scientists with PhD's and decades of practice in the field, from different countries and continents, that were published by these journals you claim are of high quality. They all seem to have arrived at very similar conclusions so it is not difficult to summarize. But since you seem not very well informed about the facts of the matter and have revealed on this talk page that you are not neutral yourself, you might not be the best judge here. (Please note there is nothing in the policies or guidelines to support the claims you have been making so far. To the contrary, as I pointed out before. It seems you are making up your own rules.) Saflieni (talk) 23:15, 4 May 2014 (UTC)

Actually it is you who is not understanding wikipedia policy. An anonymous editorial very much satisfies WP:RS. A bunch of pHds writing letters to the editor does not satisfy WP:MEDRS. I suggest you actually read the policies.

As I've stated to you before in my talk page, if you want to edit wikipedia you need to sometimes edit AGAINST your personal opinions. That is what I did when I was the first person to add XMRV even though I thought it was probably a bunch of crap (which it later turned out to be), and I added PACE even though I think CBT is woefully lacking in effectiveness and based on a dubious etiology.

Arbitrary Break 1

You make many assumptions but you don't back them up with facts. Why don't you start by specifying where exactly we can find your pretend rules in the guidelines, instead of just waving at them broadly. The sections in the NPOV and MEDRS pages you've been referring to don't even apply. Those specific guidelines concern references to support broad scientific views and medical claims, which are not under discussion here. Talking about guidelines; your negative remarks about 'my' intentions, 'my' beliefs/politics, 'my' experts, and your 'warning' are violations of the "Comment on content, not on the contributor" and the "Do not threaten people" guidelines. Wikipedia is not a private toy and your quarreling attitude is not helpful. Saflieni (talk) 18:37, 5 May 2014 (UTC)

To finalize the discussion on guidelines and move on: Wikipedia guidelines do not distinguish between opinion articles like editorials, letters to editors, or other opinion pieces published in the same journals as far as reliability is concerned. If Sciencewatcher (or anyone else) fails to point out where a distinction is made in the guidelines I will ignore his remarks on this matter. More relevant here is this advice: "Use sources that directly support the material presented in an article and are appropriate to the claims made. The appropriateness of any source depends on the context." The context here is the 'furious response'. The sources directly supporting the material are the published letters. Saflieni (talk) 02:08, 6 May 2014 (UTC)

The guidelines to distinguish between them with regard to weight. "Giving due weight and avoiding giving undue weight means that articles should not give minority views or aspects as much of, or as detailed, a description as more widely held views or widely supported aspects. Generally, the views of tiny minorities should not be included at all, except perhaps in a "see also" to an article about those specific views".

The letters themselves are linked to directly from the Lancet article --sciencewatcher (talk) 02:36, 6 May 2014 (UTC)

As for the complaint itself: I can see your point. The Lancet says the complaint exists on wikipedia, but that doesn't appear to be the case. Were they talking about the mecfsforums wiki that you linked? Normally that type of webpage wouldn't be classed as a reliable source, but it looks like it may actually be the main source for Hooper's complaint. It wouldn't be a problem if Prof Hooper put the complaint on his own personal website - that would satisfy WP:RS. However when it appears on a forum like this, it's more of a problem. I would recommend getting some opinions from other editors before deciding whether or not to add it. --sciencewatcher (talk) 02:36, 6 May 2014 (UTC)

Generally speaking, forums or a wiki are not considered a reliable source. That said, given Hooper's activity in this area, I suspect he would have mentioned it to someone if there were bogus copies of his report floating around, and that word of that would have spread quickly. Googling, I found a wealth of corroborating evidence and at least at a quick glance, nothing at all to suggest any impropriety, so I'm inclined to allow it to be used in the context of a short blurb about the response to the PACE trial.

As to the anonymous editorial, it certainly sounds like that's the Lancet's (formal?) reply to all the hubbub, so if we're going to include references to Hooper's response, it's only fair to include the Lancet's as well. After all, WP is about verifiability, and it's verifiable that the Lancet responded. Finally, I would also support the removal of the word "furious", since it could be interpreted in that context as either "angry response" or "a flurry of responses". While there's no doubt that "angry" applies to many of the individual responses, it certainly doesn't apply to all of them, so I don't think it's appropriate to have that as a possible interpretation. If we wanted to use "flurry" or maybe say there was a "vigorous response", or something along those lines, that works for me. – RobinHood70 ^talk 03:48, 6 May 2014 (UTC)

The guideline mentioned by sciencewatcher applies to references for medical claims. The comments in The Lancet etc. are of a different nature. Below is my suggestion for improvement. I tried to represent reactions from all sides as best as possible. I suggest using as reference a page on the Lancet's website with links to both the editorial and the correspondence, rather than linking a great number of individual letters, but have no clue if this is against guidelines: http://www.thelancet.com/journals/lancet/issue/vol377no9780/PIIS0140-6736%2811%29X6022-1.

Nope, that was quoted from NPOV. Also: "NPOV is a fundamental principle of Wikipedia and of other Wikimedia projects. This policy is nonnegotiable and all editors and articles must follow it." --sciencewatcher (talk) 16:08, 6 May 2014 (UTC)

There is a difference between judging the weight of research for supporting medical claims, that's what the guideline sciencewatcher mentioned is for, and opinion articles with no research content and no peer review. Those are in completely different realms. Wikipedia doesn't distinguish between types of opinion articles published in the same journals, because they are what they are: opinions, not facts. Saflieni (talk) 16:26, 6 May 2014 (UTC)

No, there is no mention of 'medical claims' anywhere at all in the NPOV page. It is the fundamental principle of wikipedia, and it is the only rule that you cannot break. It applies to opinions just as much as anything else. The Lancet's opinion carries a lot more weight than mine, for example. --sciencewatcher (talk) 17:10, 6 May 2014 (UTC)

I fail to see the relevance. This guideline doesn't specify what I asked, and it doesn't apply to the content of the published letters. They do not contain statements supporting fringe science or anything of that order. The editors of The Lancet judged these letters significant enough to be included in the discussion so who are you to question their value? Doing that makes you part of the discussion. That's not your place as a Wikipedia editor and that's why Wikipedia doesn't distinguish between these types of articles. Do you have any plans to help improve this page, or are you just going to continue like this forever? Saflieni (talk) 17:41, 6 May 2014 (UTC)

I just realized that one of the comments (Kewley) is already being used as a reference in this Article. Saflieni (talk) 19:03, 7 May 2014 (UTC)

Here's my suggestion: The publication of trial results in The Lancet generated a vigorous response. Letters to the editor by some specialists and patient advocates expressed concern over generalisability of the results and questioned protocol changes during the course of the trial that resulted in some participants meeting criteria for “trial recovery” at baseline. Patient groups expressed disappointment over news media interpreting the definition of “recovery to normal by trial criteria" as “cured”. Professor Malcolm Hooper submitted a 442 page response to the Medical Research Council and a shorter 43-page complaint to the Lancet. The MRC and the Lancet considered the submissions but rejected them. A Lancet editorial expressed suspicions of an active campaign to discredit the research. [35][36] Saflieni (talk) 09:26, 6 May 2014 (UTC)

NB: The confusion between "recovery" (in terms of trial criteria), and "cured" (associated with reaching average levels of health) also hit BMJ. A summary of White et al (2011) on the page Shortcuts described trial results as follows: "Less than a third of patients were cured by either treatment (30% (44/148) after CBT and 28% (43/154) after graded exercise therapy)." http://www.bmj.com/content/342/bmj.d1168 Saflieni (talk) 16:17, 6 May 2014 (UTC)

If there are no serious objections anymore... If someone could advise on my question about referencing the comments (I also found some pdf's of the Lancet correspondence pages through researchgate that could be linked but I didn't find all of them yet.) As these seem to represent the most pressing concerns, I guess it won't be necessary to also include a reference to the Hooper pages. Saflieni (talk) 16:18, 7 May 2014 (UTC)

Sciencewatcher: stop bullying. If you don't have any valid arguments to support your actions, your actions are not valid either. Saflieni (talk) 18:02, 8 May 2014 (UTC)

My arguments are above. I've better things to do with my time than getting insulted and attacked when I try to help a newbie understand wikipedia policies. You've proven that you completely misunderstand NPOV, which is the most important wikipedia policy. Please follow WP:CIVIL otherwise there will be no further discussion on this talk page. --sciencewatcher (talk) 18:40, 8 May 2014 (UTC)

I guess you refer to your argument "You seem to have come here to try and shoehorn something into wikipedia due to your beliefs/politics. That is never going to work here, so I'm just warning you that you're wasting your time." and a number of others along that line. I don't find that helpful. We disagree on the question if the NPOV section you refer to applies here. That doesn't mean you are right and I am wrong. The text I have improved decribes the responses to the trial by different groups. The most reliable sources for who said what are representatives of those groups themselves. Allowing one group to interpret what the others say and presenting that as fact on Wikipedia is not a neutral point of view. Your idea of weight seems to be based on personal likes and dislikes, not on Wikipedia policies. Anyway, I have put this opinion forward, but I don't see you addressing it. Just reverting my edits, because you don't like them is not an example of civil behaviour. Saflieni (talk) 19:02, 8 May 2014 (UTC)

I'm sorry that that comment upset you. I was merely trying to let you know that ignoring wikipedia policies is a waste of time here. I've removed that comment. You seem to be under the illusion that WP:NPOV and WP:WEIGHT applies just to some sections (medical, scientific). That is NOT the case. They apply to all articles. That's not my opinion, that's how wikipedia works. If you read the policies you will see this. I'm not reverting your edits because I "don't like them". I'm reverting them purely based on policy. --sciencewatcher (talk) 19:46, 8 May 2014 (UTC)

Again you ignore my arguments. Besides, how is this not expressing likes and dislikes: "The problem with your 'experts' is that they tend to push crappy science (XMRV even after negative studies, or mould even though there is zero evidence) and then they badmouth good science that doesn't fit their preconceived ideas." If you took the time to read the comments you would realize you are jumping to the wrong conclusions. But even so, if you describe a controversy between different points of view, you have to summarize those points of view accurately, without inserting your own bias. It doesn't matter who wrote them, it does not even matter if they are true or not. That's irrelevant to the issue as becomes clear from the guidelines: "Use sources that directly support the material presented in an article and are appropriate to the claims made." "Avoid stating opinions as facts." "Try not to quote directly from participants engaged in a heated dispute; instead, summarize and present the arguments in an impartial tone." And so on. These were all violated in the original text. I haven't yet seen any specific guidelines to support your opinion. My guess is they don't exist. Saflieni (talk) 21:56, 8 May 2014 (UTC)

I was more referring to people like Shoemaker and Myhill (among others) who are regarded as 'experts' on forums and spout really bad quackery. Some like Hooper aren't exactly experts, but not quacks either. Since you quoted Hooper, that was why I said 'your experts'. Hooper, Goudsmit, etc. certainly aren't experts as far as wikipedia's sourcing guidelines are concerned. However, getting back to the point: the guidelines you should be looking at are WP:NPOV and {{WP:WEIGHT]] (actually they're both the same guidelines, but different parts of it). The point is that it does matter 'who wrote them'. You can't just quote everyone equally, as that is a weight violation. --sciencewatcher (talk) 23:02, 8 May 2014 (UTC)

Again not addressing my arguments: This is a description of the different points of view in a controversy! Weight has nothing to do with it! Different guidelines apply in this situation than the section of NPOV you keep referring to. I explicitly quoted them several times already and, as I have argued over and over again, it's also common sense. You fail to produce any guideline that says differently. If you can't accept that you might be wrong, file a dispute or something. I give up. Saflieni (talk) 23:39, 8 May 2014 (UTC)

No, WEIGHT applies to controversies as well. Please quote where it says that WEIGHT only applies to scientific or medical info (as you seem to believe). I certainly could be wrong, but it looks like I've done a lot more editing here than you, so perhaps you should consider the possibility that you are misunderstanding the guidelines. Have you read the 'neutral point of view' page in its entirety? --sciencewatcher (talk) 23:43, 8 May 2014 (UTC)

The controversies you think of are of a different nature and concern majority/minority views along the lines of evolution/creationism, medical science/homeopathy, and so on. The NPOV section you refer to even gives an example of this: the flat earth concept. We're not dealing with that here. This controversy is about perceived flaws in the methods used during a specific trial. We're not discussing a "subjective" issue here, but responses published in reliable sources concerning a verifiable issue. If we choose to describe the vigorous/furious responses, we have to summarize and attribute them accurately. Even where fringe science is concerned Wikipedia NPOV FAQ WP:ASSERT states: "When a statement is an opinion (e.g. a matter which is subject to dispute or commonly considered to be subjective), it should be attributed in the text to the person or group who holds the opinion." So, "weight" should be considered as appropriate to context, which in this case is the controversy itself: ask yourself what are the most reliable sources for each opinion? If you allow either side of a dispute to represent the views of the other side, you are strawmanning instead of applying "weight". I have already quoted guidelines for how best to describe the different views in a situation like this. But I believe I have answered all your questions many times already and in many different ways, while you fail to produce any guideline that say differently. Why don't you start concentrating on that? Saflieni (talk) 08:34, 9 May 2014 (UTC)

Arbitrary Break 2

The point is that the Lancet carries a lot more weight than each of those letters. So how much space should we give them? It would seem that the Lancet editorial should get the majority of the space, and then Hooper as he is the main opponent (and he has the most coverage). That is the way the article was before, and it is better than your version.

Also, regarding "not subjective" and published in "reliable sources": in that case we should only be using reliable medical sources, and letters to the editor definitely fail MEDRS.

Let me ask you two questions: have you fully read the MEDRS and NPOV guidelines? Did you yourself write any of those letters to the editor that appear in the Lancet website? --sciencewatcher (talk) 13:58, 9 May 2014 (UTC)

You haven't read any of my explanations have you? I have quoted explicit guidelines the previous text was in violation with and specific guidelines that support my edits. Your personal opinion is irrelevant. If you delete the edits again I will consider this vandalism. Saflieni (talk) 15:40, 9 May 2014 (UTC)

(edit conflict)The way I see it, you both have valid points. The policies and guidelines you've both been quoting do apply here. Unfortunately, it's the nature of these policies to come into conflict with each other sometimes. I think it's appropriate to summarize all the major viewpoints, which Saflieni's edit mostly does. What's missing, though, both before and after Saflieni's edits, is the response of the medical community. From what little I've seen, that covers the gamut from people who thought the PACE trial was a well-conducted study to those who thought more like Hooper did, but I can't say I've really kept up on reaction to the PACE trial enough to think I have a good feel for it.

Looking at the actual text of both, they're really saying mostly the same things, with the exception that Saflieni's text adds the reaction of patient groups into the mix. I don't think it's unreasonable to insert that view, as long as it's clearly expressed as the reaction of the community and not given any more weight than is appropriate to that.

Lastly, I take the editorial in the Lancet as being a letter from the editor, though that's not entirely clear. Whatever the case, without knowing who wrote it and what kind of process it went through before being printed, I think we have to deem that as an opinion, albeit one that has a bit more weight than normal, since it certainly appears to be from the editor or at least someone on their staff, which probably puts it on par with Hooper. – RobinHood70 ^talk 15:50, 9 May 2014 (UTC)

Thank you. I could add the letter by White from the same Lancet pages if you like, but there's the FAQ page containing the same information already. The issues raised by Shepherd, Hooper, etc. were never addressed as far as I know, which seems to be a major source of frustration among patient groups. Saflieni (talk) 16:02, 9 May 2014 (UTC)

I would agree that the editorial is an opinion, as well as the letters, and that the editorial carries more weight than the letters. Do you have a proposal for a new version, Rob? Saflieni's version seems to be a gross weight violation. Also, the authors did reply to the letters, so that would have to be included as well if you go down that route, but I believe that would be a huge mess and a weight violation. However if that's what the consensus is, I'm happy with it. Saflieni: I would recommend you revert your changes until we agree on a new version. --sciencewatcher (talk) 16:05, 9 May 2014 (UTC)

sciencewatcher, don't continue to harass me on my talk page with more insults. NB Since this little bit of text deals with the vigorous reactions, but the issues raised were not addressed by the medical community, it's difficult to summarize their response. I believe the article by Nigel Hawkes (where's the "weight" here by the way?) covers most of the "responses to the responses" to fill up this gap. But I will add a link to the letter by White later. If RobinHood70 agrees I'll leave it as is with the addition of a link to White's letter. Saflieni (talk) 17:14, 9 May 2014 (UTC)

Asking whether you wrote one of the letters isn't harassment. It's a very valid question here - if you wrote one of the letters you have a WP:COI. Please stop your personal attacks and concentrate on the article. You aren't showing much good faith here. --sciencewatcher (talk) 17:20, 9 May 2014 (UTC)

I think you're just trying to bully me into saying something awful to you, so you can have me barred. That's not going to happen. Saflieni (talk) 17:29, 9 May 2014 (UTC)

Well you've already said some pretty awful things to me (above). However I'm willing to overlook them if you can concentrate on editing the article in future. People (including me) sometimes get hot-headed, and fighting back doesn't improve anything. I've tried to show good faith by removing the comment that upset you (above), limiting my reverts to one a day, and trying to ignore your attacks and rudeness. We can do this one of two ways: either we can be civil to each other and concentrate on the article (my preference), or we can go to the admin noticeboard and get an admin to intervene. Your choice. --sciencewatcher (talk) 17:40, 9 May 2014 (UTC)

Please note that a complaint about my conduct was filed by sciencewatcher on 10 May 2014. The examples of my "attacks and rudeness" he presented were judged "not attacks" and "not uncivil", and the complaint was consequently removed. I don't much care for the insinuations, but for the record: I am not one of the letterwriters and I don't know any of them other than through their publications. Saflieni (talk) 08:03, 13 May 2014 (UTC)

I'll wait for RobinHood70 to respond to my suggestion, thank you. Saflieni (talk) 18:24, 9 May 2014 (UTC)

I added a summary of the authors reply to the concerns expressed in the Lancet with a reference to their letter, as promised at 17:14, 9 May 2014 Saflieni (talk) 21:11, 9 May 2014 (UTC)

"then Hooper as he is the main opponent" maybe now OT, but I see no good reason for presenting Hooper as the key critic. I've seen dismissive coverage of the length of something he sent to the Lancet, but I don't think he had anything published. Charles Shepherd has had at least two letters published criticising how results from PACE were presented, and he's the medical advisor to the ME Association. I don't think it would be a good idea to present him as 'the main opponent' either, but he seems to have more of a claim to the title than Hooper. Flatronal (talk) 23:54, 9 May 2014 (UTC)

The other issue is that we are essentially duplicating all of this in the controversies article. In fact if you look there, there is a much better summary of the criticisms. That is also a better place for this stuff. I would suggest just trimming it all down to a single sentence in the treatment article, and leaving the controversies article as-is. --sciencewatcher (talk) 00:30, 10 May 2014 (UTC)

I suggested removing the lot, but that was opposed by sciencewatcher earlier. He's just making trouble. As he has repeatedly uttered hateful remarks towards the scientists and patient advocates that critiqued the PACE paper, this prejudice is clouding his judgment. If someone has a strong bias about a subject he/she can't be neutral and should not edit text about it in my opinion. Saflieni (talk) 01:10, 10 May 2014 (UTC)

Sciencewatcher's ONLY argument against my edits was "weight". Letters to editors should not be cited. The "much better summary" on the controversies page uses websites and dead links as references. Like I said: just making trouble. Saflieni (talk) 01:23, 10 May 2014 (UTC)

I didn't oppose it. I completely missed that suggestion that you made. I apologise. I don't see any letters to the editor referenced in the controversies page, but maybe I missed them. Now I suggest that you remove your personal attack above, otherwise I will be requesting admin intervention. This is your last warning - stop personal attacks and show good faith. --sciencewatcher (talk) 01:27, 10 May 2014 (UTC)

I'm just highlighting your disruptive behaviour. If you wish to request admin intervention you should return the insults you removed to clean up after yourself first. Your threats are just more examples of being disagreeable, but I'm not stopping you. Saflieni (talk) 01:42, 10 May 2014 (UTC)

To prevent the discussion about allowing the letters as sources from dragging on forever: 1/ I have the impression that the consensus is to allow them as long as it's clear they represent opinions (which I believe is now the case). 2/ One of the letters was already used as a source on this page long before this issue arose, apparently without objections (Kewley). 3/ It remains unclear why an opinion article by a journalist should carry more weight than a comment by - for instance - an expert who's got a PhD in Myalgic Encephalomyelitis. For these reasons I ask sciencewatcher to stand by the promise he made earlier on this talk page: "However if the consensus is that we should include them, then go ahead. 18:01, 4 May 2014 (UTC)", so we can all move on. Saflieni (talk) 12:04, 10 May 2014 (UTC)

Hi Saflieni.

I agree that the PACE trial is significantly flawed and the recovery criteria is inadequate, but Wikipedia is a systematic appeal to authority (to a fault) so you may have trouble convincing certain regulars about the weight of letters to the editor and other minor articles. I'm rusty on Wikipedia's rules, but I think people can get carried away sometimes. Wikipedia is not a bureaucracy. RobinHood's advice seems sound.

WP:NPOV is the most important policy to understand here, NPOV overrides MEDRS, WP:MEDRS is a guideline not a policy, and it does not actually exclude the use of letters to the editor and even lists them as an example of journal articles, and MEDRS does not apply to controversies anyway, so you may want to explore the possibility of expanding the content there instead:

http://wiki.riteme.site/wiki/Controversies_related_to_chronic_fatigue_syndrome#PACE_trial

A significant but unknown proportion of the relevant community dispute the PACE trial results, so it deserves a mention.

Regarding the discussion on Sciencewatcher's talkpage, in this dispute it doesn't really matter whether there are alleged errors or flaws in Hooper's or other work, errors and flaws are relatively common in published papers too, and unfortunately those appear to be irrelevant to judging whether a source is reliable. As far as the PACE trial is concerned, there is at least 1 factual error in the Lancet paper, at least 1 highly dubious claim in the accompanying Lancet editorial which the Press Complaints Commission ruled was misleading on the issue of recovery, at least 1 factual error in the Lancet editorial accompanying the authors' reply (which in relation to this current dispute over including a link to Hooper's complaint, ironically claimed in 2011 that Hooper's complaint is available here at Wikipedia), and at least 2 factual errors in the Psychological Medicine recovery paper buried among significant flaws and several questionable statements, such as describing their definition of recovery as "comprehensive and conservative" when it overlapped with their own definition of severe debilitating fatigue.

I must also point out that there is a Wikipedia policy known as "Ignore all rules". "If a rule prevents you from improving or maintaining Wikipedia, ignore it." Not a blanket excuse to ignore NPOV, and I know people will piss and moan about it as if it is some myth, but the fact is it exists and is a policy that we should follow when practical.

I would like to see the main criticisms of the PACE trial briefly mentioned. Good luck. On the issue of recovery in general, you may find this recent systematic review paper of interest, as it includes criticisms and positively cites some of the critical letters to the editor in response to the controversial PACE trial recovery paper. - Tekaphor (TALK) 13:21, 10 May 2014 (UTC)

I just did this edit, I hope it helps (not the same paper I referred to above). - Tekaphor (TALK) 13:59, 10 May 2014 (UTC)

I think it makes sense that mentions of criticism of PACE reference the published criticism, but I don't know how to decide how much space this should be given. While the available evidence is so weak, maybe it just needs to be accepted that the article will need to be rather long and complicated?Flatronal (talk) 20:08, 10 May 2014 (UTC)

Seeing how much text is already devoted to details about the PACE trial and CBT/GET in general, and given the controversy over it, I think it would be acceptable for each critical letter to receive at least a sentence. The Lancet editorial may be highly opinionated and parts of it may be questionable, but this editorial also serves to demonstrate that the controversy is notable. - Tekaphor (TALK) 02:41, 11 May 2014 (UTC)

It would seem that the controversies sub-article is a better place to put this, and just mention it briefly on the treatment page. That seems to be what Saffleni suggested as well. Is there any objection to this? --sciencewatcher (talk) 16:44, 11 May 2014 (UTC)

Moving it into a new section by Tekaphor was a good idea, but I believe that after all the discussions here we should now leave it as it is. Saflieni (talk) 11:55, 12 May 2014 (UTC)

Sorry, I haven't read through all of this, but I caught a reference to me while looking at Saflieni's most recent diff. I'm busy on another project and no longer really paying attention to all the back and forth. To be honest, I just don't have the energy to deal with this right now. – RobinHood70 ^talk 18:44, 13 May 2014 (UTC)

The conversation should probably continue under the new section Leopardtail started, "PACE and Neutral Point of view". - Tekaphor (TALK) 04:21, 15 May 2014 (UTC)

Neutral Point of View

A couple of points I would like to make here WK:MED-RES DOES NOT supercede WK:NPOV. NPOV clearly states that is it a fundamental principal of Wikipedia. While MEDRES is imporant, it absolutely does not supercede NPOV.

Further the material on CBT/GET has been left on the main page and must be removed. To have CBT/GET on the main page while everything else is on this page with a less than clear link violates NPOV rules on 'forking' - it creates editing bias.

Further NPOV requires that the selection and weighting of sources does not reflect a single point of view. This and the main page violate both rules. Myhill is regarded by many in the field not just as an expert but an authority on the disease to dismiss her as a crank and ignored her articles shows a wilful lack of objectivity. That seems to apply to everything that does not fit a very restricted point of view.

The selective use of sources with the poor NADH study being quoted, but not the high quality one violates NPOV rules. The failure to mention a Ribose paper cited as of high quality and showing good results in a paper by Whiting/Bagnall needs to be addressed.

This page is a great improvement on the version I saw a few months ago, but still needs work. --Leopardtail (talk) 00:21, 11 May 2014 (UTC)

"there is no doubt that our present epidemic of autism is due to vaccination" - doesn't really sound like an "expert" or "authority" to me. --sciencewatcher (talk) 00:32, 11 May 2014 (UTC)

That has nothing whatsoever to do with her standing in the field of chronic fatigue syndrome and she was far from alone in making that mistake. As you point out on the main page, Wessley attempted to classify the disease as Neurosthenia, but now calls that view 'a mistake' and clearly states it is a disease of physical origin. --Leopardtail (talk) 14:02, 11 May 2014 (UTC)

Actually it has everything to do with it. The GMC slapped Myhill's wrists for quackery - I don't think it was for the vaccine/autism thing, although that is clearly quackery as well. It's not that she 'made a mistake'. The info is still there on her website. --sciencewatcher (talk) 16:07, 11 May 2014 (UTC)

I believe the "quackery" consisted of advice given to a CFS patient to request B12 injections or similar treatment from their own physician. Not really a mortal sin (and common practice elsewhere by the way). On the other hand: There are some references to debunked theories about autism on a part of the website that seems to be outdated by about 7 or 8 years, which is pretty sloppy/weird. (That said, it should be noted that the autism controversy started with a paper published in The Lancet and that it took The Lancet 12 years to fully retract it, which might be called sloppy too.) Saflieni (talk) 22:45, 11 May 2014 (UTC)

The GMC hounded Sarah MyHill with vexatious complaints that proved unfounded due to to malicious complaints from doctors insistent on a pseudo-scientific dogma regarding ME. Should you make any more offensive comments including the label of quack against specific doctors who do not take a psychiatric view of the disease I will make a formal complaint to the administrators regarding your behaviour.

If the material is out of date I agree it should be removed however this is not an Autism page is it? - and we are being led off topic when arguments cannot be defended. — Preceding unsigned comment added by Leopardtail (talk • contribs) 12:25, 14 May 2014 (UTC)

Press Complaints Commission ruled Lancet editorial to be misleading

If the Press Complaints Commission has ruled that the Lancet that should fall within WP rules on sources and be quotable.

With respect to the paper itself, we can use it as a source and it quoted the actual states, citing that the 'recovery score, was less than the the entry score. This is a simple statement supported by the paper and we should be able to state that here. - Leopardtail (talk)

Lancet. 2011 Mar 5;377(9768):786-8. doi: 10.1016/S0140-6736(11)60172-4. Epub 2011 Feb 18.

Chronic fatigue syndrome: where to PACE from here?

Bleijenberg G1, Knoop H.

http://www.ncbi.nlm.nih.gov/pubmed/21334060

This Lancet editorial by Bleijenberg and Knoop claimed:

"PACE used a strict criterion for recovery: a score on both fatigue and physical function within the range of the mean plus (or minus) one standard deviation of a healthy person’s score. In accordance with this criterion, the recovery rate of cognitive behavioural and graded exercise therapy was about 30%—although not very high, the rate is significantly higher than that with both other interventions. Although the PACE trial shows that recovery from chronic fatigue syndrome is possible, there is clearly room for improvement with both interventions (cognitive behavioural and graded exercise therapy)."

They referred to the normal range as a synonym for recovery, which is incorrect and misleading, and in response to the controversy and confusion, White et al. later clarified that the paper did not report on recovery: "It is important to clarify that our paper did not report on recovery; we will address this in a future publication." [16] The normal range was not based on a healthy person’s score, at least not the threshold for normal physical function, which was based on a general population, and as later conceded by White et al., was erroneously described in the Lancet paper as a working age population: "For physical function, this was a demographically representative sample (in our paper we stated that this was a UK working-age population, whereas more accurately this should have been an English adult population)". [17]

The general population sample referred to included those with chronic debilitating illness (22%) and those aged over 64 years (24%). The inclusion of these subgroups lowers the mean and widens the standard deviation, and these can become non-representative of the spread of the data when the dataset does not have a normal distribution. These are the reasons why the so called "normal range" in physical function was so low as to be lower than the trial criteria for significant disability. Not a strict criterion for recovery. Some problems also exist for the normal range in fatigue (one of the Lancet letters to the editor partly covers this), but they are not quite as bad.

The Countess of Mar took issue with the highly dubious claims made in the Lancet editorial and reported it to the Press Complains Commission. I will include the official link to the ruling, but first I want to point out that the Lancet along with Bleijenberg and Knoop strongly rejected the claim, did not think there was any inaccuracies, and stood by the comment.

http://www.meactionuk.org.uk/Reply-to-PDW-and-Sir-Simon.htm

Hooper claimed that Zoe Mullan of the Lancet promised an official correction, but that never happened as anticipated.

The PCC ruled that the Lancet editorial was in breach of Clause 1 (Accuracy), for publishing inaccurate or misleading information and failing to distinguish fact from opinion, but also ruled that the Lancet had offered sufficient action to remedy the initial breach, because the Lancet allowed the trial authors to clarify that recovery was not reported on in the initial paper.

http://www.pcc.org.uk/news/index.html?article=ODQwOQ==

Yes, the PCC link should quality for a reliable source!

Bleijenberg and Knoop further defended their comment by claiming that "one way of defining recovery is to say that a patient is no longer fatigued and disabled" and "one could further operationalise recovery as scoring within normal range". As the normal range overlapped with the criteria for severe debilitating fatigue, it is a stretch to say the normal range means "no longer fatigued and disabled". The whole debacle was odd, since both Bleijenberg and Knoop have co authored papers which regarded 60 points in physical function as severe impairment. - Tekaphor (TALK) 02:37, 11 May 2014 (UTC)

Tekaphor The link you cite does seem to indicate that the recovery score of 60 being below the entry score of 65 puts the definition of recovery in objective question. Would you like to suggest an edit to the PACE material that we might discuss and agree on before editing the page? — Preceding unsigned comment added by Leopardtail (talk • contribs) 12:14, 14 May 2014 (UTC)

Which link? - Tekaphor (TALK) 04:11, 15 May 2014 (UTC)

NADH

This article references a single study on NADH, however the systemic review by Bangall, Whiting et al references two. One less well designed, one more --Leopardtail (talk) 23:32, 10 May 2014 (UTC)

We should only be giving the conclusions of the reviews. What does Bagnall say about the studies? I had a quick look and didn't see any mention of those in the text (only in the references). --sciencewatcher (talk) 00:37, 11 May 2014 (UTC)

A rating of quality and effectiveness is a conclusion and thus entirely appropriate, you are trying to force other editors to quote sources verbtim, rather than simply use them to support statements. This is not a WP requirement - this is clearly stated.

The review in question lists two NADH studies and tabulates both effectiveness of the measure, and quality of the study. The Ribose study and one NADH study are both scored as 'effective' and 'well designed' on a 1-10 scale. Are you referring to the same study?--Leopardtail (talk) 14:03, 11 May 2014 (UTC)

I think I was looking at the wrong review. It says "One RCT showed an overall beneficial effect of oral NADH (reduced nicotinamide adenine dinucleotide)". This is the same trial that the BMJ says has "methodological problems". --sciencewatcher (talk) 15:58, 11 May 2014 (UTC)

Two reviews an earlier one by Whiting and the later one by Chambers already cited reported positively. Since the weight of opinion on the Forsyth study is 2:1 for I have edited the text appropriately retaining the Chalder view with correcting weighting to the (as per WP:NPOV) --Leopardtail (talk) 12:08, 14 May 2014 (UTC).

Bagnall doesn't say whether it is good or bad quality, just that its validity is '12' (which is quite low when the maximum is 20). Also it doesn't mention the study in the review itself. Whiting says there is 'insufficient evidence' of its effectiveness. You can't say that a bunch of psychiatrists panned the study! (Anyway, they referenced Colquhoun D, Senn S. (2000) which also confirms the poor quality of the study. So unless you have a reference that says the study is high quality, the "poor quality" comment stays. --sciencewatcher (talk) 15:16, 14 May 2014 (UTC)

1. A clear statement was made that only high quality studies were included and a rigorous selection process was used on at least one of the three other systemic reviews - hence yes that statement is supported. WK only requires that the sources support my statement. Given that they were still included and given an above average rating in an already quality controlled group of studies that assertion was entirely supported. Further the weight of evidence across multiple studies does not support that prominent statement in the text. I have removed both quality assertions as a compromise and left the criticism with the reference that supports it. WK does not require that my statement is included in the study verbatim.
2. I have now found three other reviews studies that make no such statement hence it must be regarded as minority opinion - that I have left it in at all is a compromise. Those three studies are all cited, all fully meet the highest MED-RES standards.
3. The statement that the authors are a group of psychiatrists is factually correct and supported by inspecting the qualifications of those who penned, so yes I can - I refrained form pointing out they they are largely the professionals responsible for the lack of UK funding for biomedical research criticised by the Gibson enquiry though I would be perfectly entitled to do so it is a matter of public record at the MRC. As yet I have not restored this content and will pause for thought on that issue. --Leopardtail (talk) 21:25, 14 May 2014 (UTC)

Saying they are psychiatrists would seem to be POV. There is no reason to say that, unless you are implying that they are falsifying the data because they only like psychiatric treatments. Also, if you look at the Chambers review, validity is not one of the criteria for inclusion (see "Inclusion criteria and study selection"). You can see that they included studies that had a validity of 0. --sciencewatcher (talk) 21:44, 14 May 2014 (UTC)

I have stated that I am prepared to let this one go, why do you continue arguing? — Preceding unsigned comment added by Leopardtail (talk • contribs) 00:30, 15 May 2014 (UTC)

ScienceWatcher: To describe the statement as original research is ridiculous. You have also removed three perfectly acceptable secondary references. Restore the edit. — Preceding unsigned comment added by Leopardtail (talk • contribs) 00:34, 15 May 2014 (UTC)

Honestly I don't think it's looking good for NADH as far as Wikipedia is concerned.

The 2001 Whiting et al review (PMID 11560542) included the 1999 study by Forsyth et al. The review states "One RCT showed an overall beneficial effect of oral NADH (reduced nicotinamide adenine dinucleotide)" but also concludes that "Interventions for which there is insufficient evidence about effectiveness include ... oral NADH".

The 2002 Bagnall et al review (PMID 12486997) includes the same study and states "Oral nicotinamide adenine dinucleotide (NADH) led to a greater improvement in symptoms (the only outcome investigated) in the intervention group compared with the control group in one small randomised controlled trial (n=26)." I can't find any mention of it elsewhere in the review. It also states "Overall, the interventions had mixed results in terms of effectiveness. All conclusions about effectiveness should be considered together with the methodological inadequacies in some of the studies. Interventions which have shown evidence of effectiveness include cognitive behavioural therapy and graded exercise therapy." It is unclear if NADH is mentioned in a positive light, it is not negative, but overall the evidence is lacking (no replication).

The Chambers et al review (PMID 17021301) is an updated version and includes the original oral NADH study and a newer study by Santaella et al published in 2004. These 2 studies used different measures. The earlier study had a validity rating of 12/20 and showed an effect, but the later study had a validity rating of 3/20 and did not show an effect. I couldn't find any other discussion on it.

The 2011 Reid et al review (PMID 21615974) describes the reasons why Forsyth et al study is a "poor-quality RCT". I don't think you can say on Wikipedia that multiple reviews do not support a conclusion, unless those reviews actually say that. Sciencewatcher might be revert happy but I don't think much can be done in this instance. - Tekaphor (TALK) 04:07, 15 May 2014 (UTC)

(Re the Whiting et al review): If the study is included above and criticised the study still warrants inclusion even if qualifications is given on the limited evidence.

(Re the Bagnall et al review): Check the stats, not just the words.

(Re the CHambers et al review): It is the earlier study that the review is supporting and the one commented on above. Since the existing critique refers to that same study an above average quality rating and positive results warrant comment.

(Re the Reid et al review): Not an objective source.

Those criticism comes from key proponents of the psycho-twaddle hence they are far from objective. The chambers study showed a positive effect and ranking of 12 for the Forsyth study, so all three studies with differnet team mebers in different publications showed rank of 12 and positive results. You appear to have confused the two studies (both descirbed as oral NADH). Further the other study (though badly designed) did not show no results when properly checked but mixed results as I would expect (not all ME patients have low NADH status). SC cant have his own way on everything given the spectacularly poor quality of this article. I will not tolerate it as it stands ----

The systemic review that is currently the only one on the page is authored by a partisan source. It's Authors are responsible for highly unscientific theories and directly responsible for the pro-psychiatric funding bias alluded to by Gibson in his comments relating to the Medical Research Council. I have denoted this as a Partisan source until a more balanced review can be collectively establish. — Preceding unsigned comment added by Leopardtail (talk • contribs) 22:06, 16 May 2014 (UTC)

It's your opinion that it's partisan. And if you look at Tekaphor's comments above, you'll see that the other reviews say pretty much the same thing. I would ask if you've been smoking crack, but I suspect you've just been spending too much time on patient forums. I think you need to get out more and read the actual science rather than listening to all the crap that is spouted on phoenixrising (I was having a look through it today, and the pseudoscientific claptrap on there would be hilarious if it wasn't so sad). It makes it very difficult for me to take anything you say seriously when you keep doing this. --sciencewatcher (talk) 22:44, 16 May 2014 (UTC)

Leopardtail, can you please post your comments underneath others rather than place unsigned comments throughout other editors comments? Otherwise it is difficult to follow and it appears like I wrote those comments. I have moved them so make it easier to follow.

https://wiki.riteme.site/wiki/Wikipedia:Talk_page_guidelines

The study you want included is already included, the dispute is about whether you can say something along the lines of multiple reviews not supporting what the Reid review says about the quality of that study. The other reviews do not comment on the conclusions of the 2011 review so I don't think you can say they don't support those conclusions. We have to report what the sources report, not add our own editorial. At most you could probably say Chambers et al gave the study 12/20 points in validity. I admit I'm unsure where the line is drawn for WP:NOR when stating a negative.

Here is another example, about the FINE trial: "About 10% of the trial participants were non-ambulatory and about 30% met London ME criteria, but separate results for these groups were not published." The first part of the sentence is backed up by the reference, but the latter part I underlined is an editorial conclusion albeit an obvious fact.

https://wiki.riteme.site/wiki/Wikipedia:No_original_research

I didn't confuse the two NADH studies, I'm aware which one you're defending, I merely reported what the Chambers et al review says.

Unless you can find something in Wikipedia's rules, I don't think you can ignore a BMJ Clinical Evidence source because the authors may be biased. I understand there is a need to correct the paucity of information about biological treatments in the article, but the research is very limited. - Tekaphor (TALK) 02:54, 17 May 2014 (UTC)

PACE and Neutral Point of view

This section of the article paints an overly supportive and positive picture of the PACE trial. The view that CBT/GET are at all effective (or indeed not harmful) may be a common view but is by no means a majority view it is simply one of many conflicting views. The PACE trial has been criticised fur using SF-36 scores that on entry were lower than the 'recovered score' on exit. This has been referenced earlier in the text by other editors. This is s key and serious criticism that prevents the reader forming their own point of view with full information.

Further a content fork is operating here where much of the criticism is on other pages but material supporting the point of view of one editor is highly prevelant. The WP:NPOV#Point-of-view_forks guidelines state that this is strictly forbidden. --Leopardtail (talk) 02:27, 15 May 2014 (UTC)

The issue is that all the MEDRS sources say CBT and GET are effective and not harmful, so that is what we have to say. The fact that some patient organizations don't like it and say it may be harmful doesn't override the reviews. However we can say that they disagree with it. I'm not sure what you mean by 'material supporting the point of view of one editor is highly prevelant'. --sciencewatcher (talk) 15:11, 15 May 2014 (UTC)

I agree, but it will take work to do properly. Some of the wording could be improved. I'm not satisfied with the section yet, and will attempt to improve it after first looking further into these issues, I'm a bit behind on it all. It's incorrect to imply that some participants met (all) the criteria for trial recovery at baseline, only that they may have met some of the criteria such as the normal range for fatigue and physical function. Also, the Department of Work and Pensions only contributed a fraction of the funding. Here are some initial thoughts on the above debates so far:

The Lancet editorial used the phrase "swift and damning" and the Hawkes article used the phrase "to the fury of the campaigners". I don't think it can be disputed that some of the response was heated, but I agree with Saflieni that more space needs to be devoted to the controversy and the actual arguments involved, not just conjecture from one side about how the response should be characterized as extremism, with little if any "distinction between the 'campaigners' and the experts". Some criticism of the PACE trial simply goes beyond the usual strawman and red herring counter arguments. I'm not sure how experts could be identified though.

It was established above that letters to the editor are in fact allowed. I think all 14 letters to the editor(s) should be briefly summarized and cited in a single paragraph or two for the controversies page. The overlapping controversy content from the two articles should be merged and expanded, with the expanded version remaining on the controversies article, with a minimal summary and link to the expanded version on the treatments article. Hooper's complaint is also hosted here: [18] but WP:NPOV and WP:RS may not allow much summary of the document at length, but it is notable (as it was mentioned in reliable sources) and at least the reader will have access to it instead of the Lancet's erroneous claim about finding it on Wikipedia.

I'm not sure if an Lancet opinion piece (by anonymous Lancet editors?) really does have greatly more weight than published letters to the editor when it comes to describing a controversy they are involved in. They are not impartial, they fast-tracked published the controversial paper in question, they hosted a press conference which lead to widespread media confusion over the normal range equating to recovery, they strongly defended an earlier related editorial which the PCC later ruled was misleading, one of their senior editors whined about the controversy on radio, and one of their reviewers introduced the controversial normal range in the first place.

Could a significantly disabled participant really enter the trial with a physical function score of 65, remain at 65 or decline to 60, and then leave the trial with a positive classification of "normal" in physical function. Yes. Anyone can confirm the letters by looking at the papers for themselves. The PACE authors must have read the letters that raise and criticize this possibility, but to my knowledge they have never disputed the claim and just ignored it. A freedom of information request confirmed it, 13% of participants met normal range for physical function at baseline, so it is not just a mere possibility but a matter of fact. [19] The PACE authors are not responsible for introducing the normal range, but they are certainly responsible for abandoning the stricter definition of recovery as laid out in the trial protocol, and then reusing the highly dubious normal range in the revised recovery criteria, which did not require any improvement in fatigue or physical function and where 60 points was deemed "recovered" physical function.

A participant could enter with a physical function score of 65, leave with a score of 60, and be classified as recovered too, but only if the other recovery criteria were also met. The requirement of not meeting Oxford criteria also included the entry thresholds for fatigue and physical function (bimodal fatigue score of 6 or more and physical function score of 65 or less), so a modest self reported improvement which crossed over any one of these thresholds would also immediately disqualify a participant from meeting Oxford criteria in the PACE trial irrespective of whether they otherwise still met Oxford criteria (which was arbitrarily assessed by nonblinded nurses). 10% of candidates were excluded for having a physical function score of over 65 points, which means patients can meet Oxford criteria in the clinic but not meet Oxford criteria as it was applied in the PACE trial. A CGI improvement for any reason does not guarantee an improvement in fatigue and physical function, an issue discussed in the recent systematic review I mentioned somewhere above. Much of this is also explained in a Youtube video. Middle aged patients of other serious diseases would also be unhappy if told that 60 points in physical function is normal healthy or a complete recovery. - Tekaphor (TALK) 04:55, 15 May 2014 (UTC)

I agree with Tekaphor's reasoning but have two remarks: "It's incorrect to imply that some participants met (all) the criteria for trial recovery at baseline" I don't agree this is incorrect because it is not the facts that matter here but the opinions we summarize. It is made clear in the text that the letterwriters imply this and have expressed this as their main concern. It is not up to us to correct them. I also don't see how the tiny section about the controversy as it is now could be more concise so I am interested to see how you intend to rephrase it. Saflieni (talk) 08:52, 15 May 2014 (UTC)

I agree that at Wikipedia what is published is more important than what is fact, but let me clarify why I'm not satisfied with the exact wording "resulted in some participants meeting criteria for 'trial recovery' at baseline.[35][38][39][40][41][42]" Earlier in the article, it is explained about the 2013 recovery paper that "Two measures of 'recovery' were used: 'trial recovery', meaning that the patient was in the normal range for fatigue and physical function, didn't meet the Oxford definition for CFS, and had a self-rated overall health score of 'much better' or 'very much better'..." Here, "trial recovery" is a very specific concept from the recovery paper which has multiple criteria in addition to the normal range, so I guess my problem is with using the phrase inside quotations "trial recovery" to refer to criticisms from 2011.

All the cited letters [35,38-42] are from 2011, 4 which criticize the normal range, with Kewley's letter and Mitchell's letter focusing more on normal physical function, and with Feehan's letter and Stouten et al's letter focusing more on normal fatigue. A few of the letters quote the use of the words "recovered" or "recovery" in their disapproval of the inappropriate conflation between normal range and recovery. I hope I'm not splitting hairs, but since none of these letters use the exact phrase "trial recovery", and that phrase refers to a very specific concept previously introduced in the article, I'm not sure why it appears there inside quotations when discussing the gist of the 2011 letters. The current wording could give the impression that the letters from 2011 are claiming participants could meet all "trial recovery" at baseline, which is not correct and could lead readers to think the critics are wrong. I merely suggest making a change to the wording "trial recovery". Does that make sense?

In his 2013 letter, Shepherd stated "In addition, the question could be raised as to how it is possible to meet the entry criteria for the PACE trial with a Short Form-36 physical function subscale score of 65 yet leave the trial as recovered with a lower score of 60." That is a valid question which the PACE authors did not answer, but Sheperd is not saying participants could meet all trial recovery criteria at baseline. I don't intend on shrinking the tiny section, but expand the details on the controversy article (mostly based on the letters and existing text from both articles) and shrinking the result to come up with a more comprehensive summary of the criticisms for the treatment article too. The controversies article isn't bound by the MEDRS guideline, but the treatment article may be to a greater extent. - Tekaphor (TALK) 01:49, 16 May 2014 (UTC)

I see what you mean. My first edit on this page was to add the above quote by Shepherd but this didn't meet with approval. Putting the phrase trial criteria inside quotation marks might be misunderstood for an actual quote, which it is obviously not. I would have copied "various composite or single criteria for recovery" but tried to keep it readable. Anyway, you do make sense, so go ahead. Saflieni (talk) 08:37, 16 May 2014 (UTC)

1. I have been checking the regulations today while checking tags for denoting poor content. The handling of disputes has to be even handed, hence having the content here with too little of the challenge stated would violate NPOV rules (because people would have to look in one place for opinion A, and somewhere else for opinion B. Common sense applies, the reader must be able to 'form their own opinion' on reading material. Most people will read a single page, or a single section hence they should not have to work hard to get balanced account.
2. I suspect the original material also breaks rules on repetition and sourcing since we have duplicated material on treatments and a large body of material from a single paper. The content of pace is duplicated in the treatments sections hence the coverage of PACE should rigorously cover the controversies and do so in this document. The whole section however is far too long and brevity is required through out it.
3. This is such a big job we need to shorten each section first and add balance and then work on the page as a whole. Tags also need adding re balance, however there are so many issues with this page that I have requested advice from Administrators as to which should be used. I am unclear whether NPOV or balance is the appropriate marker (across these pages). — Preceding unsigned comment added by Leopardtail (talk • contribs) 18:47, 16 May 2014 (UTC)
4. Given that a complaint against the Lancet was upheld by the press complaints commission, that they refused to publish his response and it was used in that complaint I feel very strongly that it can be referenced as news or as systemic review of the material. I also feel it should be referenced in other articles re CFS given that it plays into the publication bias in Britain that is key to understanding the conflict discussed on the main page. — Preceding unsigned comment added by Leopardtail (talk • contribs) 18:58, 16 May 2014 (UTC)

In response the this above: The issue is that all the MEDRS sources say CBT and GET are effective and not harmful, so that is what we have to say. The fact that some patient organizations don't like it and say it may be harmful doesn't override the reviews. However we can say that they disagree with it. I'm not sure what you mean by 'material supporting the point of view of one editor is highly prevelant'. --sciencewatcher (talk) 15:11, 15 May 2014 (UTC)

MEDRES is important, it is not the word of GOD - it does not supercede balance, Neutrality or require the exclusion of all other opinion. It is also possible to insert reasonable content and add a 'reliable source required' marker in order to invite other editors to locate something as is done in the TSH article. We simply need to be careful how we introduce the balance, NPOV rules can supercede other rules where it is reasonable to do so.

Let's start this part of the discussion by seeing if we can agree what we would like to BE ABLE to say and we can then thrash out how to achieve it with a common goal. Up to now science watcher I have misunderstood your intent and assumed you took an utterly psychological viewpoint. If we can get an 'agreed intent' thrashing out how to achieve is is more likely to be possible with team effort. — Preceding unsigned comment added by Leopardtail (talk • contribs) 19:08, 16 May 2014 (UTC)

Yes, I completely agree. NPOV is the only rule we cannot break. You can throw MEDRS out the window in certain situations (like I did when adding XMRV to the article, due to its exploding press coverage). We have also overridden MEDRS in the controversies sub-article, as it seems important to go into more detail about the controversies. Right now the article seems pretty balanced, however I'm happy for Tekaphor to make the changes he suggested above. If you have any concerns about the article or suggestions for changes, please make them, otherwise we should remove the npov tag. --sciencewatcher (talk) 19:26, 16 May 2014 (UTC)

For now the flag must remain until issues are addressed I stopped short of flagging the whole page, preferring to deal with one section at once and lower prominence of the flag. I do not expect to resolve the whole page at once, for now PACE will do for me to remove the tag from that section. Leopardtail (talk) 23:03, 16 May 2014 (UTC)

Points for discussion re Neutrality

I have made multiple points already.

1. The article does not give adequate voice to the criticisms of the trial's methods and includes the dubious manipulation of SF-36 values showing worsened physical health. This is misleading thus violating NPOV.
2. The article does not make it clear enough that the advantage of GET over APT was one of COST effectiveness, where the authors assigned higher cost to APT. Again this omission lacks balance.
3. The trial is given too much weight without balance re-enforcing a bias towards psycho point of view. Thus adding to violation of balance across the article as a whole.
4. As per NADH it is partisan in its selection of sources.
5. The wording is not balanced and violates NPOV guidelines (
6. The CBT/GET view is a minority view among experts in the field not a majority view - it has far from univirsal support within psychology and little support outside it..
7. This pages has masses of minority view content of which this is the first thing I am insisting be tackled with less wiki-layering and more 'spirit of wikipedia'. The weight of this view is as low among patients as among experts. Personally I see some value in CBT, but very a very limited number of patients. My view is probably more positive than the dominant discourse, but this page must represent the dominant discourse among the informed.
8. Balance - A single medical discipline has both overly positive material and half the page content. There are at least eight medical disciplines involve in ME/CFS.
9. The insistence of some editors on this page that reviews must explicitly mention (in text) the effectiveness of measures is unreasonable since the range of methods is much higher in this disease and it would be an unreasonable expectation that a review would mention every effective form of treatment.

Throughout the article the following aspects of WP:NPOV are not being respected, you need to read this page more thoroughly.

• Indicate the relative prominence of opposing views.
• Achieving neutrality has specific guidance regarding the manner in which you are interacting with other editors, the summary removal of all content that is not yours violates these rules.
• Article Structure specifically the order in which pro and con psych are ordered, and the removal of con information to the 'conflicts page' violates NPOV.
• Due and undue weight Across the page as a whole and within this section undue weight is given both to the minority view that CBT has more than very short term effect and the view that GET does anything but harm. The content is highly biased towards psych treatments that are reported by 30% of patients as causing lasting harm. The content of physical treatments is biased and inaccurate. It also fails to make points made by Bagnall et al in comments on systemic reviews that many are unable to report harms because of poor quality of original studies. Her high activity in such studies relating to CFS and the higheer likelihood of such reactions among ME patients has special relevance.
• Balance see above

Other members of this edit team have raised their own comments re content, I would suggest we agree one point at once and collectively work on finding a resolution that stays a close as is reasonable to reference guidelines. Five minds should be able to achieve some acceptable form. Leopardtail (talk) 23:02, 16 May 2014 (UTC)

I think you have a misunderstanding about how wikipedia determines weight. We give prominence to meta-analyses and systematic reviews - that is the 'majority view'. It's not a numbers game. Patients' opinions are a minority view, whether you like it or not. We have broken NPOV on the controversies page to give extra prominence to minority opinions over and above what MEDRS permits. --sciencewatcher (talk) 23:07, 16 May 2014 (UTC)

The article is a hodge podge because sections of it have evolved incrementally over many years. Balance and weight can be difficult to determine. Yes, wiki-lawyering is bad and the spirit of Wikipedia is better. The PACE trial is highly notable because it was large and it was the most controversial study in CFS history. I'm an inclusionist so I don't think the article is too long, although I won't argue that it doesn't need work. I'm going to have a go at addressing the wording and lack of discussion about the criticisms of the PACE trial, but I need more time to get familiar with the issues, feel free to have a go. I thought GET showed some advantage over APT in terms of fatigue and physical function and the walking test, not just cost advantage? APT was not really what most patients think of as pacing.

The "CBT/GET view" may be a minority view among the totality of experts and researchers, but is there a good source for that? Wikipedia reflects the totality of published literature on the topic, with preference given to sources higher up on the food chain. CBT/GET receives the most attention because it is the most published in sources regarded as the most reliable for the purposes of Wikipedia. That's just the way it works, which is why I said Wikipedia is a systematic appeal to authority to a fault, but that doesn't stop us from adding the appropriately sourced caveats about the research, some which can be sourced from those same reviews.

Experts critical of the CBT/GET hype are not the ones flooding the literature. Some researchers criticize it behind the scenes and at conferences or write the occasional letter to the editor, or maybe their papers aren't passing peer review for whatever reason. Defining an "expert" is also difficult here. There are so many people claiming to be experts or regarded as experts by others. I don't think NPOV has been "broken" for the controversies article, just that it is difficult in establishing the appropriate weight. MEDRS doesn't apply to the controversies article, it is an article about controversies. - Tekaphor (TALK) 04:12, 17 May 2014 (UTC)

They are sadly relegated to letters pages, however we should be able to refer to letters from experts in the field as part of the critique, much of the balancing information is moved to the controversies page now that I look at that page too, that material needs to be moved here and we would then have a much more balanced coverage of PACE. Reducing or increasing the amount of wording dedicated to a view is another way to produce balance.

(my own content removed as superfluous) Leopardtail (talk) 08:41, 18 May 2014 (UTC)

I think you have a misunderstanding about how wikipedia determines weight. We give prominence to meta-analyses and systematic reviews - that is the 'majority view'. It's not a numbers game. Patients' opinions are a minority view, whether you like it or not. We have broken NPOV on the controversies page to give extra prominence to minority opinions over and above what MEDRS permits. --sciencewatcher (talk) 23:07, 16 May 2014 (UTC)

1. I disagree. You are using MedRef regulations when discussing weight, they are separate issues, and separate regulations. During the month I was not editing here I was reading the those regulations very thoroughly, your argument is wrong. However you yourself need to read the NPOV regulations much more thoroughly. You also need to read the section of Original research relating to 'any person of reasonable intelligence.'.
2. With respect to the 'majority view' WP is quite clear that is is "the view held by most experts in the field". Most experts in the field would actively disagree with the content of this page and its balance. No less than thirty individuals have describe is as 'shocking'.
3. The most obvious and easiest first start would be to shorten the Psych content without changing meaning that would go half way to addressing weighting. E.g. the Belgian study could be one sentence referring to lower effectiveness of group therapy.

Even if a view is 'most published' WP is quite clear that weighting does not necessarily mean massively more because its more prevalent but a little more or with indications of prevalence. There are specific regulations here, CBT/GET is a minority view and must have its weighting indicated and its presence be in proportion.

1. There is a limit to how much I will argue this until my administrative complaint has been heard because frankly I see no hope of you showing any degree of compromise. You do not seem to realise that others are tolerating far too much material we regard as unscientific while you seem determine to argue every point with lawyering rather than common sense. — Preceding unsigned comment added by Leopardtail (talk • contribs) 12:17, 17 May 2014 (UTC)

Unreasonable removal of link

A link was removed on May 1 to a letter form Sir Malcolm Hooper that is referenced in the text. That letter is also 'expert opinion' and as such should not have been removed. I have restored that content for this reason since it is justified by references to that letter in the text and by the soon to be added reference to the Press Complaints Comission ruling. Both the existing reference and the second reference support its inclusion.--Leopardtail (talk) 02:40, 15 May 2014 (UTC)

I agree. As was noted earlier there is no reasonable doubt as to its authenticity, which is the key argument. IRS guidelines like: "Self-published material may sometimes be acceptable when its author is an established expert whose work in the relevant field has been published by reliable third-party publications." need not even be discussed here, as the references themselves support its inclusion for the sake of verifiability. Maybe it would be preferable to link directly to the online publication of the complaint instead of to other links on the mecfsforums wiki page. http://www.meactionuk.org.uk/COMPLAINT-to-Lancet-re-PACE.htm But, let's give Tekaphor some leeway in rephrasing the section. Saflieni (talk) 14:53, 16 May 2014 (UTC)

Agreed saflieni, over to you Tek. Might I suggest you also add the stats regarding SF-36 physical function scores being reduced from 65 pre-treatment to 60 post treatment thereby showing loss of physical function? This is information any person with reasonable intelligence could determine from the source hence it's not covered by OR. With respect to the 'orinigal online publication' do you have a link for that Saf? — Preceding unsigned comment added by Leopardtail (talk • contribs) 08:32, 18 May 2014 (UTC)

Leopardtail, if you are referring to the FOI request, that only shows some people met criteria for normal physical function at baseline, not necessarily that some people met criteria for normal physical function at followup after declining from 65 to 60, although that is obviously a possibility. - Tekaphor (TALK) 02:47, 20 May 2014 (UTC)

Will take another look at that again and check the fine print when current activity in CBT/GET is finalised, don't want to divide effort too much Tek... I was actually referring to entrance criteria vs improved criteria. 'Recovered' on the SF-36 scale is over complex 60 if normalised or 100 if not. I Understand they weren't normalised. If we are going to keep this short, I would suggest we stick to 'expert comment' are refer to it as such.Leopardtail (talk) 20:48, 20 May 2014 (UTC)

OK, but I'm not quite sure what you mean by "'Recovered' on the SF-36 scale is over complex 60 if normalised or 100 if not". At no point have the reported SF-36 scores been normalized, including the threshold of 60. I don't think there is any intrinsic threshold for recovery on the SF-36 scale. 100 just means no reported limitations to the questions given, and 100 might be too high of a threshold, because it's not that uncommon for healthy people to have some limitations for vigorous activities for example. Defining normal is arbitrary, but the vast majority of the healthy working age population would be scoring 85 or higher, the trial's original threshold for recovery before it was strangely and inappropriately lowered to 60. - Tekaphor (TALK) 03:47, 21 May 2014 (UTC)

Cognitive behavioral therapy

This section is excessively long, lacks NPOV and has far too much material from a small scientific clique. NO WP rule requires this and is lacks balance, please shorten it SC with a once paragraph summary and multiple references. The study showing that CBT does not work in a group context for example should be a single sentence. — Preceding unsigned comment added by Leopardtail (talk • contribs) 19:39, 16 May 2014 (UTC)

We're just following WP:WEIGHT and WP:MEDRS. I'm not sure what you mean 'small scientific clique'. All of the meta-analyses seem to agree that CBT is mildly or moderately effective. The reason it is given more space in the article is because (along with GET) it is the only treatment that has been shown to be in any way effective at all. --sciencewatcher (talk) 21:05, 16 May 2014 (UTC)

As argued many times before: we are not bureaucrats or clerks who are supposed to follow rules mindlessly. We all know there is a bias in favor of granting funds to one type of research, and there has been a bias in selecting researchpapers for publication in British journals ever since the 90's. I think what Leopardtail means is that we don't have to amplify the result of all that yet again on Wikipedia. That's just being sensible. Besides, I don't think CBT is the only treatment to have shown to be in any way effective. There are other examples, like the recent publication of Agomelatine treatment. The trouble with such pilot studies is that it usually doesn't attract enough funds for follow up as the focus is elsewhere. Saflieni (talk) 18:53, 17 May 2014 (UTC)

I suggest removing the following sentence and its source: "One uncontrolled study with no follow-up found that CBT could facilitate full recovery in some patients, with 69% of the patient cohort no longer meeting the CDC criteria for CFS and "full recovery" occurring in 23% of CFS patients after CBT using the most comprehensive definition of recovery.[9]" This is a small low quality cohort study in a low impact journal with claims that seem rather unrealistic when compared to the results of most other studies. Considering that ambitious criteria for recovery were used (e.g. SF36 pf cutoff score of 80) the suggested outcomes tempted the authors to jump to conclusions like: "One could say that a patient meeting these criteria not only recovered from CFS, but is also more healthy than a substantial part of the healthy general public. Thus, the effect of CBT may be underestimated." I don't think this fits the general understanding of the effects of CBT. The authors are employed by an institute that has CBT for CFS as its core business, so may be biased. Saflieni (talk) 12:25, 18 May 2014 (UTC)

Agree with removing material based on citation "Is a Full Recovery Possible after Cognitive Behavioural Therapy for Chronic Fatigue Syndrome?". The study is not medrs and there was no control group. 109 patients started treatment and there was an 11% dropout rate with no explanation. Definitions were operationalized with emphasis mainly on fatigue measured by self reporting questionnaires, assessments by research assistants, and no symptom data beside fatigue was presented. No explanation if initial diagnosis or self reported recovery was confirmed by medical professionals or any objective testing. There was measurement and discussion of necessary change of patient perception of normal health (vs actual normal health) for full recovery to occur. Ward20 (talk) 21:38, 18 May 2014 (UTC)

Psychotherapy and Psychosomatics has an Impact Factor of 7.230 which is very respectable. Ward20 (talk) 22:19, 18 May 2014 (UTC)

Interesting Ward20, were dos this info come from? Leopardtail (talk) 20:39, 20 May 2014 (UTC)

The study critique is from my reading of the full text, so not useable in the WP article, just discussion of value of study on talk page, the impact factor is easy to google. Ward20 (talk) 23:41, 20 May 2014 (UTC)

You're right, my mistake. Nevertheless, it is my opinion that we should take some extra care with using primary studies originating from this institute. I have some doubt about their independence as their existence as a center for (CBT)treatment and (CBT)research depends on the results they publish, which in turn are used in lobbying for funds to finance their ambition of implementing some kind of CBT franchising operation in the Netherlands (as became clear in Bleijenberg's departure speech in 2012). Anyway, I will take out the text discussed here if there are no objections Saflieni (talk) 23:57, 18 May 2014 (UTC)

Put simply I think there is more objective pro-CBT material present and would support removal. More objective and brevity is the soul of wit. Also Med-Res indicates primary sources should only be used where secondary sources concerning the material are unavailable. CBT is rich with secondary material offering the positive point of view.

RE this insert:

A 2007 meta-analysis found that the effectiveness of CBT depends on the diagnostic criteria used, with studies using the Oxford criteria having a trend towards significantly higher effect sizes that those using the CDC criteria. The review also notes that CBT for chronic fatigue disorders has about the same efficacy as diverse psychological treatments for a variety of psychological disorders.[11]

This is a nice insertion that beautifully and elegantly summises the conflicts without politics, but would it be better at the start of the CBT section? It seems more a nice introductory summary than 'stuff to put later'. I was thinking in terms of:

1. good sumamry,
2. case pro,
3. case con

so that he section flows when read. Case pro coming first as a compromise. Would anybody object to that re-location? Leopardtail (talk) 20:27, 20 May 2014 (UTC)

I don't support the proposals above. If there are pro and con sections it's going start being more difficult to edit without cherry picked material going into the sections. IMO. Ward20 (talk) 23:53, 20 May 2014 (UTC)

I wont argue this point it's not important enough. By pro & cons I mean the two bodies of work we already (stuff supporting) then (stuff offering criticism) have - sorry if that was unclear. My primary point was that I would like any material that is inherently balanced or introduces the view points at the start, so that we begin with Neutrality rather than begin with a POV. Hope that clarifies and if you are still resistant, I am happy to drop it. Leopardtail (talk) 08:23, 21 May 2014 (UTC)

I have on minor concern that has nothing to do with Neutrality, that being I have seen two CBT approaches at close quarters. The one causing most of the conflict and (arguably) side effects being the 'causal model'. The second and the one that would have greater chance of acceptance being the 'energy sparing model'. I think lack of awareness of this model is doing a dis-service to both mental health in the eyes of patients, and the patients themselves. This is not something I am prepared to work on preferring treatments given poor coverage in the article, but I have invited SC to source material on this approach. This is a suggestion but about something I feel passionate about - so I will step back for the rest of you to discuss. My guess would be that SC and Ward20 would be the best editors far this issue. Leopardtail (talk) 08:23, 21 May 2014 (UTC)

If there aren't any reviews about it then we can't really add it to the article. I'll discuss further on my talk page. --sciencewatcher (talk) 15:12, 21 May 2014 (UTC)

There is already a similar distinction made in the article: "There are two main cognitive-behavioural hypotheses for CFS. The weak (conservative) hypothesis assumes that CFS is irreversible and that CBT can help the patient cope with the illness better. The strong (liberal) hypothesis says that CFS is entirely reversible and that the illness is perpetuated only by the patient's cognitions, behaviour and emotions." The Canadian definition made a similar distinction, as did an earlier Cochrane review on CBT, although they abandoned it because all the studies done were of the 'strong' type. - Tekaphor (TALK) 01:08, 22 May 2014 (UTC)

Leopardtail contacted me on my talk page about changing (liberal) hypothesis to (optimistic) hypothesis if I thought it was better. I asked Leopardtail to put it on this talk page so everyone could have input. I haven't seen it yet so here it is. I'm not sure (liberal) hypothesis or (optimistic) hypothesis is exactly right so I'm asking for other alternatives/opinions. Thanks. Ward20 (talk) 05:02, 22 May 2014 (UTC)

My preference would be to use whatever words it uses in the reference. I think it was me who added that bit in the first place, but it looks like that bit of the book isn't available for free on google books any more, so I can't see it any more. It might be better to use a different source - there is a review here which is newer and freely available. It seems to go into a lot more detail, although it doesn't appear to have any mention of the 'weak' and 'strong' variants. If anyone is interested I would suggest reading that review and possibly rewriting the section. I don't have the time or inclination to do it right now. --sciencewatcher (talk) 16:08, 22 May 2014 (UTC)

Not been on WP so did not see your request. My thinking was that 'strong' and 'weak' are less descriptive to a complete novice reading this as an encyclopaedia rather than a medical textbook. I felt the addition of (cautious) by Ward20 added significant clarity to what 'weak' means for the (wo)man on the street. I understand Ward20's comment that there might be a better word than 'optimistic' - I was grasping for the exact word myself. I think 'liberal' seems somehow out of context and a different antonym for 'conservative' would give higher instant recognition of meaning in the same way that conservative has. I would love people to read that one sentence and instantly 'get it'. This is just a matter of putting polish on good content.

So far as language is concerned I am not so sure exact wording from med papers is good content, purely on grounds of readability, accessibly unless it creates POV issues. I do concur with the (perceived) concerns of SW that we must be careful not to give meaning not in the original text.

Vis-vis CBT models, I did wonder whether suitable references would be unavailable and accept it may not be possible to insert that model until one of us stumbles across a reference. These are not POV issues, I am just trying to produce the best possible article together. Leopardtail (talk) 19:25, 22 May 2014 (UTC)

From the 2003 Canadian definition (current link given in Wikipedia's clinical descriptions article seems to download a truncated file? [20])

"Two hypotheses have been presented as underlying the CBT model of chronic fatigue syndrome (105). The first hypothesis “assumes that the pathophysiology of CFS is largely irreversible, but considers that a fine-tuning of the patient’s understanding and coping behavior may achieve some improvement in his or her quality of life.” The second hypothesis is based on the premise that the patient’s impairments are learned due to wrong thinking, and “considers the pathophysiology of CFS to be entirely reversible and perpetuated only by the interaction of cognition, behavior, and emotional processes. According to this model, CBT should not only improve the quality of the patient’s life, but could be potentially curative” (105). Some proponents suggest that “ideally general practitioners should diagnose CFS and refer patients to a psychotherapist for CBT without detours to medical specialists as in other functional somatic syndromes” (106,107)."

"The first hypothesis seems reasonable within the multi causal biopsychosocial model of disease and illness, however a cure may be found. But there is much that is objectionable in the very value-laden second hypothesis, with its implied primary causal role of cognitive, behavioral and emotional processes in the genesis of ME/CFS. This hypothesis is far from being confirmed, either on the basis of research findings or from its empirical results. Nevertheless, the assumption of its truth by some has been used to influence attitudes and decisions within the medical community and the general cultural and social milieu of ME/CFS. To ignore the demonstrated biological pathology of this illness, to disregard the patient’s autonomy and experience and tell them to ignore their symptoms, all too often leads to blaming patients for their illness and withholding medical support and treatment."

From the 2000 Cochrane systematic review: [21]

"CBT could be either type ’A’ (encouraging return to ’normal’ levels of rest and activity) or type ’B’ (encouraging rest and activity which were within levels imposed by the disorder). The way in which modification of thoughts, beliefs, rest, and activity was attempted was used to delineate two ’types’ of CBT. ’Type A’ attempted to increase activity and reduce rest time in a systematic manner, independent of symptoms, towards ’normal’ levels. ’Type B’ attempted to tailor the patient’s rest and activity towards levels which were compatible with the limitations imposed by the disorder. Therefore, type B CBT did not explicitly attempt to increase the patient’s physical or psychological capacity beyond improving their ability to ’cope’ with their disabilities."

There was only one 'type B' study though (Friedberg 1994).

From the 2008 Cochrane systematic review: [22]

"In the original version of the review, the way in which modification of thoughts, beliefs, rest, and activity was attempted was used to delineate two ’types’ of CBT. ’Type A’ attempted to increase activity and reduce rest time in a systematic manner, independent of symptoms, towards ’normal’ levels. ’Type B’ attempted to tailor the patient’s rest and activity towards levels which were compatible with the limitations imposed by the disorder. Therefore, Type B CBT did not explicitly attempt to increase the patient’s physical or psychological capacity beyond improving their ability to ’cope’ with their disabilities. For the purposes of updating the review, following discussion between the review authors, it was agreed that distinguishing between the two types of CBT described above was not feasible. This approach to categorising studies was therefore not adopted. Instead, interventions were categorised according to their theoretical underpinning, as follows: 1) Traditional CBT models, including cognitive behaviourl approaches drawing from Beckian principles (Beck 1979). 2) Recently developed CBT models, including mindfulness training (Kabat-Zinn 1991), compassion-focused therapy (Gilbert 2005) and acceptance and commitment therapy (Hayes 2003)."

I think 'weak' and 'strong' sounds OK, or maybe 'coping' versus 'causal' or perpetuation, but the problem is that (contrary to claims I've read elsewhere that there is no reason for CFS patients to be concerned about CBT because it is delivered as it would for coping with any other chronic disease), the CFS literature has been clearly dominated by the 'strong' type, whereas the 'weak' type (i.e. coping with chronic disease) almost doesn't exist at all in the literature. Research into 'weak' CBT for CFS as a chronic disease might be more interesting, as opposed to the current flawed model that has dominated so far. The basics of CBT would be similar, the difference would be the assumptions made about CFS and which of the patients' thoughts-emotions-behaviours are judged to be irrational or maladaptive. I think Jason et al have done a CBT study after the 2000 Cochrane review but they tested the 'strong'/'type A' too, with guidance from 'type A' proponent Vincent Deary, against other therapies such as pacing. - Tekaphor (TALK) 03:11, 23 May 2014 (UTC)

Excellent suggestions. I went with the 2008 Cochrane review material as I thought it had the highest impact and was the newest. I'm not wedded to any of the wording so if it needs reversion or changing no problems.Ward20 (talk) 08:29, 23 May 2014 (UTC)

I've moved this edit [23] to below because it is not the same document I was referring to. - Tekaphor (TALK) 02:16, 25 May 2014 (UTC)

Full version direct from source here: | CCC (second link) - User:Leopardtail

Recovery from CFS

I added a section about "Recovery from chronic fatigue syndrome", based on two recent systematic reviews. - Tekaphor (TALK) 02:54, 20 May 2014 (UTC)

Very good job Tek. Probably an abbreviated version of this should be used for the main article recovery section. The Reviews there are quite old. Ward20 (talk) 03:08, 20 May 2014 (UTC)

Thanks Ward20. Also just did these two similar brief edits for the same article.[24] Started wording on an abbreviated version for the main article but may not finish today. - Tekaphor (TALK) 03:15, 20 May 2014 (UTC)

Excellent job Tek... I take the view the CBT section of the article now has a 'balanced view'. Hopefully SC agrees. I will message and request his input. Hopefully we will soon be able to remove those conflict tags and consider ourselves to have consensus. Do we have such consensus (vis-a-vis CBT) or does anybody think further edits for balance are required? Leopardtail (talk) 20:22, 20 May 2014 (UTC)

If by SC you mean me, then yes I'm happy with the changes. I'd suggest removing the tags unless there are any other issues. I was thinking of just tweaking some of the content in the new recovery section, in particular the bit about the results invalidating the theory behind CBT. I think using Malouff and Wiborg might be better: Malouff found that cognitive elements didn't make the treatment more effective, and there was a trend in the opposite direction, and Wiborg found that the effect of CBT was independent of any change in physical activity (which we already mention elsewhere). Or perhaps we should just add that bit from Malouff. I don't have access to the full-text of Adamowicz 2014, so it's difficult for me to really do much with it. Also there is a very long paragraph there which might be worth splitting. --sciencewatcher (talk) 21:00, 20 May 2014 (UTC)

The other thing I was thinking is that it might be useful to have more detail about the actual recovery values (rather than just giving a range). If people are looking at the recovery section, they will probably want more detail about actual recovery rates. --sciencewatcher (talk) 00:00, 21 May 2014 (UTC)

Thanks Leopardtail. It is a long paragraph but it was difficult making it more concise without losing important details or spending more time on it.

Sciencewatcher, the part about contradicting the cognitive behavioural model is sound. The misguided model blames the reduction of function and activity on cognitive and behavioural factors, and predicts that tackling these factors with CBT/GET improves or restores function and activity, with proponents still misleadingly pushing this idea based on non-blinded trials using self-report, when the limited objective evidence that exists generally contradicts those claims. There is also no objective evidence of CBT or GET leading to a full recovery, and if anyone knows of any, I'm interested in seeing it. Here is temporary access to the fulltext of the Adamowicz paper. The relevant text is under the section titled "Recovery versus successful adaptation".

The Wiborg paper shows that CBT with GET failed to increase the already low levels of physical activity. I paraphrased the Adamowicz paper when I wrote that these results were "contrary to the cognitive behavioural model of CFS which predicts increased physical functioning as a result of intervention, as otherwise 'successful' trials did not find significant changes in physical activity". They don't say the entire model is debunked, they mean the part about increasing activity is contradicted. Are you using the Wiborg paper to argue that the reported reductions in fatigue not being "mediated" by physical activity means that such increases in activity are not necessary for improvement recovery? The Wiborg paper does not comment on recovery, so I wouldn't say its a better source versus a systematic review on recovery. The effect of homeopathy in open label clinical trials is probably independent of any change in physical activity too. ;-)

What's the relevance of the Malouff paper here? That even if the cognitive behavioural model is partly contradicted, GET doesn't contain cognitive elements but is effective anyway? The models underlying CBT and GET are closely related but have a somewhat different emphasis. Both blame deconditioning for symptoms in some way or another, regard the activity ceiling as reversible, and aim for increases in activity. The studies in the Wiborg paper used a combination of both CBT and GET, and there is no other evidence for GET leading to sustained increases in physical activity, so the actometer results do directly contradict this shared element between both CBT and GET. Getting patients to believe in the model of GET may function as a substitute cognitive element in itself.

I'm not sure much more can be said about the actual recovery rates. The overall conclusion of the paper is that the definitions of recovery in the reviewed studies lack consensus, are generally inadequate, and are more like a clinically significant improvement than a full recovery. - Tekaphor (TALK) 03:28, 21 May 2014 (UTC)

Thanks. I was hoping it would give a nice simple table of various recovery rates that we could include, but it doesn't appear to. I wasn't saying that the part about contradicting the cognitive behavioural model is sound, just that it might make sense to add the info from Malouff: "A comparison in the present meta-analysis of treatments with and without cognitive elements provided no significant evidence that including cognitive components led to a greater effect. In fact, a trend occurred in favor of not including cognitive components". (Or perhaps that could be included in the CBT section where we already use Malouff). --sciencewatcher (talk) 04:10, 21 May 2014 (UTC)

OK, I guess we can say something somewhere in the article along the lines of cognitive elements not offering any advantage, but I wouldn't put emphasis on the "trend" favouring no cognitive elements, as it was still clearly statistically insignificant, those p values are very high, and the analysis was based on a small handful of studies, so calling it a trend is overreach. All the studies prompted gradual increases in activity, but it's interesting that cognitive elements aren't unnecessary, even though there are no actual increases in activity as a result of therapy. - Tekaphor (TALK) 01:37, 22 May 2014 (UTC)

Will keep my eyes open for something on recovery rates. I agree it would be highly useful. Leopardtail (talk) 19:36, 22 May 2014 (UTC)

If weight isn't an issue, Wikipedia's rules may allow a table to be created from the Adamowicz review which would include each study and what definition of recovery was used, but I think that's unnecessarily bloaty in this instance, because the quality of the individual studies are generally poor and the definitions used are all over the place and a bit rubbish, which is basically what the Adamowicz review says in more eloquent wording. Generalizability issues aside, the PACE trial had a good opportunity to settle the issue but they bollocks it up. The Malouff review doesn't even include a control rate so the conclusion about "the number of CBT clients who were no longer in the clinical range with regard to fatigue" lacks context and in itself is a rubbish definition of recovery anyway. No one really knows how many patients make major improvements and genuinely recover because of CBT. Perhaps something similar can be said for natural recovery rates, the research is heterogeneous so the estimated recovery rates are all over the place as well. - Tekaphor (TALK) 02:22, 23 May 2014 (UTC)

I agree if a crystal clear simple statement has been made it should be kept short and sweet - as per any content. Leopardtail (talk) 21:08, 24 May 2014 (UTC)

I have done some edits to the main article to reflect the progress made here. [25] - Tekaphor (TALK) 03:01, 25 May 2014 (UTC)

Had a quick look and directly reflects the improvement made here (hence should have consensus) - same thought crossed my mind. You mentioned CCC, for benefit of editors full version direct from source here: | CCC (second link) Leopardtail (talk) 09:15, 25 May 2014 (UTC)

The second link [26] is the IACFS/ME's Primer, not the CCC? - Tekaphor (TALK) 00:50, 26 May 2014 (UTC)

Placebo control

This seems to be WP:OR, and is it even possible to have a placebo control for exercise or a behavioural therapy? --sciencewatcher (talk) 23:06, 23 July 2015 (UTC)

For CBT I suppose you could identify the supposed maladaptive thinking or critical behaviour and do CBT to instead reinforce the thinking or affect a different behaviour, whilst telling the patient that it would help them. Possibly what the editor was trying to get at was that the other treatments compared to CBT in the PACE trial involved different amounts and types of interaction with medical professionals so any response seen may have actually been a placebo effect. Here's a BMJ letter mentioning this. JMiall₰ 23:55, 23 July 2015 (UTC)

I see Cochrane mentions placebo controls, so I've tweaked the article accordingly. Note that the lede should summarise the content in the article, which the sentence about placebos didn't appear to be doing. --sciencewatcher (talk) 04:15, 24 July 2015 (UTC)

GET

I suggest the text in the GET section be replaced with the more up to date and better written section in the main article:

A 2014 National Institutes of Health report concluded that while exercise therapy of the type known as graded exercise therapy (GET), could produce benefits, it may not yield improvement in quality of life and that because of this limitation GET should not be considered as a primary treatment but instead be used only as one component of a broader approach. The report also noted that a focus on exercise programs had discouraged patient participation in other types of physical activity due to concerns of precipitating increased symptoms.[69]

A 2016 Cochrane review, stated that exercise therapy could contribute to alleviation of some symptoms of CFS, especially fatigue. The evidence for this however comes only from studies of people who are well enough to attend outpatient clinics and that this in turn limited who could be recommended exercise therapy as an intervention. The Cochrane review also noted that research was inconclusive as to which,if any, type of exercise therapy was superior.[75] A 2006 study not part of the Cochrane process, concluded that GET did not show evidence of reducing disability in people with CFS to the extent that they could return to work.[76]

As with CBT, patient organisations have long criticised the use of exercise therapy, most notably GET, as a treatment for CFS.[72]In 2012 the MEA commenced an extensive opinion survey of patients who had received GET. Based on the finding of this survey, in 2015 the MEA concluded that GET in its current delivered form should not be recommended as a primary intervention for people with CFS.[73]

amosabo ^t@lk; 18:19, 8 February 2016 (UTC)

I think the following information should be incorporated in some form :

In July 2016 the Agency for Healthcare Research and Quality issued an addendum to their CFS/M.E evidence review finding insufficient evidence of effectiveness of CBT on function, employment and global improvement and a low strength of evidence of improved fatigue. As well as insufficient evidence of effectiveness of GET on any outcome.

as it is highly relevant from a US government health agency review of evidence.

C7762 (talk) 14:39, 20 August 2016 (UTC)

B-12

The section on B-12 cites sources dealing with general fatigue. Many cfs patients report b-12 injections to be helpful. Please rewrite, or delete. — Preceding unsigned comment added by 76.226.197.84 (talk) 20:04, 1 June 2016 (UTC)

Do you have any studies in mind? Bear in mind that an uncontrolled study isn't very useful (as *everyone* will have some benefit due to the placebo effect), and injections will have a much larger placebo effect than a tablet. While Medscape isn't the best reference, it does seem to sum up the current state of the evidence. It appears to cite all the available placebo-controlled trials into B12 and CFS (unless there are any new ones). --sciencewatcher (talk) 22:52, 1 June 2016 (UTC)

Description of PACING

The following discussion is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.

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The description of the management technique of Pacing in Chronic_fatigue_syndrome_treatment#Pacing appears to be of Adaptive Pacing Therapy (APT) which was devised for the PACE trial. This is very different from Pacing as used by CFS patients and described by the CFS charities. Yet the last sentence quotes patients surveys which refer to Pacing and implicitly implies it refers to the description (APT) in this section.- this severely misrepresentative. Thanks for Listening C7762 (talk) 09:06, 14 September 2016 (UTC)

The refs are from Nijs, and predate the PACE trial. I don't have the full-text. Does it actually say APT in it? What are you basing your comment above on? --sciencewatcher (talk) 15:07, 14 September 2016 (UTC)

Thanks @Sciencewatcher: , You are right Nijs published in 2006 : Pace protocol published in 2007. A technique called Pacing has been used to manage symptoms by CFS patients going back to before 2000 ( I will find references if anyone wants them). My motivation for the comment was that I feel the description in Chronic_fatigue_syndrome#Pacing (in-particular time-contingent pacing) better reflects (what I understand) patients know as Pacing (which I feel should carry some weight in a section about treatment and management techniques). The source for this description is a 2012 paper also co-authored by Nijs. I now see that I did not present a strong argument for change in my original comment and withdraw it. sciencewatcher what are your (and anyone elses) thoughts on bringing this page in line with Chronic_fatigue_syndrome#Pacing? Thanks and looking forward to your views. C7762 (talk) 19:31, 14 September 2016 (UTC)

Please also note: I am hoping for a healthy debate in Talk:Chronic_fatigue_syndrome#update to help reach a consensus and sciencewatcher as an active editor on the CFS pages I would value your input - if you don't have much time maybe a few words for now, to get the ball rolling. Thanks C7762 (talk) 19:31, 14 September 2016 (UTC)

Feel free to go ahead and make any changes, as long as they reflect the sources and you follow policies such as MEDRS as mentioned by Jytdog. --sciencewatcher (talk) 20:03, 14 September 2016 (UTC)

Please propose edits here, C7762 - content needs to be driven by reliable sources per MEDRS. Thanks. Jytdog (talk) 20:33, 14 September 2016 (UTC)

Thanks sciencewatcher & Jytdog , rest assured I wont make edits on CFS pages without first proposing them and getting a consensus. And thanks for the pointer to MEDRS - I will read through this., I don't have time to put together a comprehensive text at the moment but I feel the description on page 50 of the NICE Guidlines for CFS and that on page 50 of the Chief Medical Officer's report (referenced by NICE) provide good material to describe Pacing and how there are many variations. For the moment I would like to propose either duplicating Chronic_fatigue_syndrome#Pacing (who's source is a consensus document) or the following (which might be considered weaker) :- "Pacing is an energy management strategy based on the observation that symptoms of the illness tend to increase following minimal exertion. The term pacing is used differently by different groups of people - as part of Activity Management Treatment or as a self-help management strategy. But the principle behind pacing for CFS is to avoid over-exertion and an exacerbation of symptoms. It is not aimed at treating the illness as a whole. Those whose illness appears stable may gradually increase activity and exercise levels but according to the principle of pacing, must rest if it becomes clear that they have exceeded their limits.". This could later be refined, including lack of studies countered with latest patient surveys. What are your thoughts? Thanks for listening. C7762 (talk) 07:28, 15 September 2016 (UTC)

References

Update on PACE trial with major implications for treatment

Please see Talk:Chronic_fatigue_syndrome#update for an update on the results of the PACE trial which has major implications for treatment options. I feel this needs an active debate from all view points as this new information has the potential to impact the text of all the CFS pages and particular the treatment page. Please input. Thanks C7762 (talk) 09:16, 14 September 2016 (UTC)

Analysis of Recovery rates reveals no Statistical Significance for CBT or GET over SMC. See Talk:Chronic_fatigue_syndrome#update . Thanks C7762 (talk) 10:05, 24 September 2016 (UTC)

The discussion above is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.