Talk:Myalgic encephalomyelitis/chronic fatigue syndrome/Archive 24

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Description genetics in lead

I'm running most changes through the talk page before implementation because of the featured article effort. After reading the review[1] I believe a small change in wording will be a more accurate and concise representation. Some studies found significant genetic associations with the illness, but have not been replicated.

From:"It can run in families, but no genes that contribute to ME/CFS have been found."

To:"It can run in families, but no genes that increase the risk of becoming ill with ME/CFS have been confirmed." Ward20 (talk) 03:26, 7 August 2024 (UTC)

Any reason not to just replace the word “found” with “confirmed” in the first sentence, for brevity? Innisfree987 (talk) 05:25, 7 August 2024 (UTC)

Are there candidate genes which await confirmation? Bon courage (talk) 05:30, 7 August 2024 (UTC)

Yes, from the cited source, "Two independent HLA types tagged by HLA-C*07:04 or HLA-DQB1*03:03 were recently shown to be significantly associated with ME/CFS status (Canadian consensus criteria) (30). These alleles are each carried by ~ 10% of ME/CFS individuals and alter risk by ∼1.5–2.0-fold. If these results are independently replicated then they indicate that genetic differences in the human immune system alter risk for ME/CFS." Ward20 (talk) 05:49, 7 August 2024 (UTC)

Okay, so maybe "It can run in families, and genetic factors are suspected" ? Bon courage (talk) 06:00, 7 August 2024 (UTC)

i am ok with either of Innisfree987 or Bon courage's suggestions. After thinking about it, my main issue is with "no genes that contribute to ME/CFS have been found" because it may be interpreted that studies have shown no relationships, which is not correct. Ward20 (talk) 06:20, 7 August 2024 (UTC)

Personally, I like your original suggestion. I suspect saying a gene "increase[s] the risk of becoming ill" is clear to more people than saying it "contribute"s to a disease. The discussion on "found" vs. "confirmed" I have no opinion on. Ajpolino (talk) 14:08, 7 August 2024 (UTC)

I think there's a subtlety here: by my reading researchers have not yet confirmed an association (and are looking for evidence); a causal effect would be a further step even beyond that. This discussion makes me think Wikipedia is smudging the difference. Bon courage (talk) 14:13, 7 August 2024 (UTC)

Bon courage would you please expand on what you mean by smudging the difference? There are plenty of sources that state the illness can run in families, and yes, I agree genetic association has not yet been confirmed. I believe the present sentence tries to describe this, but can it be improved? Ward20 (talk) 23:06, 7 August 2024 (UTC)

Well, the article invokes genes that "contribute to" this condition, and above the suggestion is to say a gene that "increase[s] the risk of becoming ill". But (from my limited reading) the search is on merely for a gene association. This may not be causative. Bon courage (talk) 23:14, 7 August 2024 (UTC)

So I guess the issue is that an increased risk factor may equal causation? It is my understanding causation requires the causal factor be both "necessary" and "sufficient" to the outcome. I don't think increased risk factor meets that criteria. It's just a statistical association AFAIK. Plus the sentences state the opposite, agreeing with the source, no gene association has been found/confirmed. Ward20 (talk) 00:19, 8 August 2024 (UTC)

Yes; if sources are careful about this distinction Wikipedia should be too. It seems an association is suspected, but not (yet) confirmed. It's too soon to be saying anything implying cause and effect, it seems from the sources. Bon courage (talk) 06:07, 8 August 2024 (UTC)

Either way, both the original and Ward's "but no genes that increase the risk of becoming ill... have been confirmed" are true statements. My impression is the long truth is "There have been several reports of gene variants associated with ME/CFS; these reports don't all agree with each other. There's currently no mainstream agreement on what gene variants are associated with ME/CFS. Unsurprisingly, there's therefore no mainstream agreement on what gene variants if any could causatively contribute to ME/CFS." Since that's confusing and probably undue detail, Femke and Ward have summarized it to a single sentence, focusing on just the last (most clinically relevant) part. Ajpolino (talk) 13:48, 8 August 2024 (UTC)

It seems like everyone is in agreement as to what the source[2] indicates. But I don't see a solid consensus about what wording best conveys it. So I'm going to list the original wording and suggestions, and ask for comments about which is best, or alternately any other improvements to the wording. I'm sure there are a lot of effective ways to describe this.

1.) "It can run in families, but no genes that contribute to ME/CFS have been found." (present wording)

2.) "It can run in families, but no genes that increase the risk of becoming ill with ME/CFS have been confirmed." (alternate)

3.) "It can run in families, but no genes that contribute to ME/CFS have been confirmed." (alternate)

4.) "It can run in families, and genetic factors are suspected" (alternate)

Asked for more input at Wikipedia talk:WikiProject Medicine here.[3] Thanks. Ward20 (talk) 00:07, 10 August 2024 (UTC)

I think 2 and 3 summarize the current evidence best. If I had to pick between the two, I would go with 3 only because it rolls off the tongue better. I agree that changing the wording to reflect the fact that studies have been done but we aren't currently in a position to confirm the involvement of genetics is wise. Most autoimmune disorders (assuming you believe that ME/CFS is at least partially autoimmmune) in general do have some form of genetic link but don't have the traits we usually see with genetic disorders (e.g., onset at birth, clear forms of inheritance), and it's more of a risk factor than a cause. From what I understand, the consensus is similar with ME/CFS. CursedWithTheAbilityToDoTheMath (talk) 03:11, 10 August 2024 (UTC)

Agree with CWTATDTM. If pressed I might slightly prefer #2 since the implications are clearest. But both are just fine. Ajpolino (talk) 03:54, 10 August 2024 (UTC)

I believe number three has consensus, and it's closest to the wording that's presently in the article, so I'm going to implement it. Ward20 (talk) 19:56, 10 August 2024 (UTC)

Discussion of the words "crashes" and "flare-ups" in lead

These two terms are used in different sentences in the lead. This "crash" can last hours or days to several months. 'Pacing of activities can help avoid flare-ups, and counselling may help in coping with the illness.

The terms are defined later in the Core symptoms section, "Extended periods of PEM, commonly referred to as "crashes" or "flare-ups", can lead to a prolonged relapse"

Since these are basically mostly used by patients, would it be better to use more common wording only in the lead? Specifically, I'm thinking of relapse instead of crash and worsening of symptoms instead of flare-ups.

Thoughts please. Ward20 (talk) 23:28, 15 August 2024 (UTC)

I do like worsening symptoms rather than flare-ups (which I don’t really hear used either colloquially or in the literature). I’m not sure relapse and crash are interchangeable though. Innisfree987 (talk) 23:58, 15 August 2024 (UTC)

I see your point. Would this be an improvement? (The hallmark symptom is a worsening of the illness which starts hours to days after minor physical or mental activity.) "People with ME/CFS may call this a "crash", and it can last hours or days to several months." It gives a bit more context to the term. Ward20 (talk) 05:35, 16 August 2024 (UTC)

I think it's too wordy. The "" around crash already convey it's the informal term for it. I chose the word flare-up to be more consistent with how other diseases describe periods of worsening. —Femke 🐦 (talk) 06:49, 17 August 2024 (UTC)

I agree that the scare quotes around crash are probably sufficient. I vote for not introducing a term that isn’t used in this context, though. Innisfree987 (talk) 06:58, 17 August 2024 (UTC)

@ Innisfree987: OK, "crash" stays the way it is. I'm not sure what you mean by, "I vote for not introducing a term that isn’t used in this context, though." Does that relate to the other term flare-ups? Thanks. Ward20 (talk) 16:54, 19 August 2024 (UTC)

Oh yes sorry, I was trying to say even though other diseases use flare-ups, I’d suggest not adding it here since it’s really not in use for this context. Innisfree987 (talk) 17:42, 19 August 2024 (UTC)

I had to think about this a bit because the article documents the use of flare-ups from the NHS source. However, the CDC states, "It may take days, weeks, or longer to recover from PEM. People with ME/CFS often describe this experience as a "crash," "relapse," or "collapse." Also, looking at other sources, I think "crash" is the predominent term used, and the discretion to change flare-ups is reasonable. Ward20 (talk) 15:03, 21 August 2024 (UTC)

IMO the article is now too clinical or vague in some aspects, and does not plainly describe the impact on persons with the illness

There has been much article improvement with removal of extraneous information and better citations, but it has lost some important plainly presented information about the impact on persons with the illness. The lead sentence should first say "ME/CFS is a complex, disabling, chronic illness."[4][5] An older version of the article was similar.[6] Serious long-term illness is vague and understated. "The reduced ability to perform pre-illness activities" is part of the three primary required symptoms.[7] It should be stated implicitly in the lead, not implied by other symptoms.

Agree. It should have PEM/PESE/PENE as the hallmark symptom that describes it, and the opener doesn't sound specific enough to be an entry to the condition. It could be applied to most chronic illnesses. — Preceding unsigned comment added by 2607:F470:6:1001:5971:682D:EACD:C334 (talk) 15:33, 26 September 2024 (UTC)

Physical functioning and Cognitive functioning sections from older versions are no longer in the artile.[8] I realize there were a lot of older sources in the sections, but, in some cases, the sections better described "how" the physical and mental aspects of the illness affect day to day activities, social and economic status of people with ME/CFS. Much of this is presented in the present Severity sections, but it's so clinically described I have difficulty relating to it. There are three sentences describing quality of life, mostly in a statistical manner, but it doesn't adequately and plainly describe the social and economic devastation upon people and families, IMO. Ward20 (talk) 01:30, 1 August 2024 (UTC)

I've put back the sentence I removed on reduced ability to do task from the IOM definition. I removed it as part of a FAC comments. I agree it's a bit vague if you read it without understanding it's part of one of the definitions of ME/CFS, but don't feel too strongly about it.

I can live with disabling instead of serious. A previous person removed serious as they felt it wasn't neutral in the other direction. The word complex seems overly technical to me. What does a general reader see if they read that word? It ME/CFS more complex than other neurological diseases? Or does it only seem that way as the heterogeneity and the cause haven't been worked out quite? For instance, the WASF finding could be a simple explanation.

As for the severity section: I'm all open for suggestions. I thought I had removed the more academic parts of cognitive dysfunction (previously functioning) and severity (previously mostly physical functioning). I think the opening sentences may be overly abstract / too clinical? —Femke 🐦 (talk) 16:38, 1 August 2024 (UTC)

Fair points. I believe the "complex" wording comes from the point of view that the illness is described as systemic[9] or multisystem[10] affecting many body parts.[11] When a patient sees a doctor about their symptoms they can list headaches, memory problems, cognition problems, joint pain, muscle pain, sleep problems, tender or swollen lymph nodes, brain fog, dizziness, balance problems, muscle weakness, tiredness, rashes, spontaneous bruising, low-grade fevers or alternately low body temperature, sore throat, neck stiffness, blurry vision, heart palpitations, mood swings, clumsiness, sensitivities to chemicals noise and light, night sweats, digestive issues, shortness of breath and others.[12] Frankly, a doctor feels overwhelmed seeing all these symptoms, or assumes the patient is mentally ill. Publications that talk about symptoms from all body parts are patient publications, or books by doctors treating many patients such as Dr. Bell, or Dr. Hyde.[13][14]. Patients realize they have to limit the list symptoms to maintain credibility, and the medical journal articles authors do also. The Wiki article lists individually many of the affected bodily systems, but it's academically described, so it loses some of the overall illness complexity and impact, IMO.

I think the same issue occurs with the new publications about severity that talk academically about the illness. I will look at newer MEDRS publications of practicing physicians to see if I can find material from the patient perspective.

The Severity section might be changed to Illness severity to be a bit more clear. Ward20 (talk) 00:22, 2 August 2024 (UTC)

I think you're on to something with the complexities needing to be described better in the symptoms section. The DecodeME questionaire is probably the best one for this. Not a review, but N is possibly larger than all other surveys combined in symptom burden. Still, ideally we find a source that is more generally acceptable.

What makes you say illness severity is clearer? I don't disagree, but I can't think of something that it can be confused for at the moment. —Femke 🐦 (talk) 19:49, 2 August 2024 (UTC)

For examples, I can think of symptom severity, disability severity, fatigue severity, reduction in quality of life severity, and they may or may not be congruent. Talking about the overall illness in the section, the title might as well state that.

With disability in the leading sentence I agree it's a reasonable compromise to remove the sentence about pre-illness activities, although it then puts more emphasis on the fatigue symptom, which the new definition is trying to move away from. But I think it is an improvement and Rome wasn't built in a day. Ward20 (talk) 00:00, 3 August 2024 (UTC)