Talk:PANDAS

Scientific update needed -- Article not neutral

One reads this article with the impression that there is absolutely no good reason to entertain that PANDAS exists. It speaks to the controversial nature of the subject matter but fails to be neutral. It's obvious the main author thinks the condition is a blanket diagnosis that is overused and has little merit.

The article ends with: "As of 2020, the NIH information pages (which Swedo helped write) do not mention the studies that do not support the PANDAS hypothesis." This line verbatim is used in Dr. Swedo's wikipedia page.

I think the same charge could be leveled at the principal keeper of this article.

Using the phrase, "As of 2021, the autoimmune hypothesis of PANDAS is not supported by evidence" Is not an accurate statement. Perhaps, the evidence is not to the level that is needed for definitive proof, or to martial a broad scientific consensus but to imply that there is no evidence or any evidence in general that could suggest a connection to an autoimmune response is flat out wrong and shows the level of bias in this article.

Here is one recent review that gives a more neutral overview of scholarly conversations, studies , investigations being had:

Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS): Myth or Reality? The State of the Art on a Controversial Disease

PMID: 37894207

PMCID: PMC10609001

DOI: 10.3390/microorganisms11102549

Yes, there are conflicting findings, and the studies are of various kinds, but speak to the conflicting evidence. Don't say, "no evidence." Factfinder2024 (talk) 20:33, 7 February 2024 (UTC)

Please have a look at WP:PA.

The article does not say "no evidence". The "not supported by evidence" content is cited to four WP:MEDRS sources; there are many more.

Section by section, here are some summarizing quotes from the very recent La Bella "Myth or Reality" article you cite:

1. Abstract: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) syndrome is one of the most controversial diseases in pediatric rheumatology. Despite first being described more than 25 years ago ... precise epidemiological data are still lacking, and there are no strong recommendations for its treatment.
2. Abstract: Recent advances in the comprehension of PANDAS pathophysiology are largely attributable to animal model studies ... (see WP:MEDRS).
3. Abstract: ... there is a paucity of randomized studies and validated data, resulting in a scarcity of solid recommendations.
4. Introduction: The absence of consensus in the medical literature is widely attributable to the lack of large randomized studies, the high incidence of both neuropsychiatric disorders and GAS infections in children, the frequent inability to establish clear temporal and causal correlations between GAS infection and the onset of symptoms, the consistent proportion of asymptomatic GAS carriers among children, and the insufficient data regarding the real efficacy of antibiotics in children with PANDAS, particularly in comparison to placebos or other types of drugs.
5. Epidemiology: There is a lack of precise data regarding the epidemiology of PANDAS.
6. Pathophysiology: Currently, the pathophysiology of PANDAS is still a matter of debate.
7. Classification: The lack of identifiable biological markers or distinct clinical characteristics continues to raise doubts and provoke controversy over the accuracy of diagnoses ... The relationship between GAS infections and PANDAS or other neuropsychiatric manifestations is still debatable.
8. Clinical characteristics: The aforementioned studies did not yield conclusive evidence supporting the presence of distinct phenomenological features specific to PANDAS.
9. Treatment: ... there is a dearth of randomized studies and validated data for such medications in comparison to placebos, resulting in a lack of robust recommendations. Furthermore, there are currently no established guidelines regarding the right choice of antibiotics for administration.
10. Conclusions: Despite significant advances in the understanding of the pathogenesis and therapeutic management of affected children, PANDAS remains a subject of dispute among experts. The controversial issues discussed in this paper can primarily be attributed to the challenges associated with establishing a definitive and timely correlation between the occurrence or recurrence of OCD and tic disorder in children who experience multiple GAS infections.

So it seems this 2023 source agrees with the current consensus, as reflected in this article. I have adjusted the wording "not supported by evidence" to be more in line with the wording in the newest sources (still disputed, still debated, and still controversial). Other specific suggestions are welcome, but it doesn't seem necessary to include the full journal article contents when the broad summaries agree. SandyGeorgia (Talk) 09:22, 16 December 2024 (UTC)

The original wiki article lacks the nuance and is misleading.

language used by the author is too loaded to be impartial. BeccaW1986 (talk) 09:35, 16 December 2024 (UTC)

Please see WP:NOTAFORUM and provide specific examples backed by specific MEDRS-compliant sources. SandyGeorgia (Talk) 09:40, 16 December 2024 (UTC)

Please read the paper published by the AAP; the tag 'controversial' no longer applies, period. Much can be said about treatment options, diagnosis, etc, and this is all ok by me. But let us at least be clear on this important point: PANS/PANDAS is no longer a controversial diagnosis. Next steps are better and more thorough research on the identification and treatment of this condition.

https://publications.aap.org/pediatrics/article/doi/10.1542/peds.2024-070334/200384/Pediatric-Acute-Onset-Neuropsychiatric-Syndrome Sirdragos (talk) 15:15, 23 December 2024 (UTC)

To make things even more clear, here a citation of the AAP press release:

"The AAP believes PANS is a valid diagnosis and is providing guidance on diagnosis and treatment in the new report. It also is calling for robust research to improve care for the condition." Sirdragos (talk) 15:22, 23 December 2024 (UTC)

This has been covered several times on this talk page; please read the full page. A) We can use that pre-print in March after it is published to add an attributed opinion about the AAP's statement on PANS (which is *not* PANDAS); and B) even at that, the AAP opinion says nothing not already known and stated in the article about both PANS and PANDAS. Once we get through this stage of making sure Wikipedia's policies and guidelines are understood, we should separately discuss renaming the article, since most of what has been written here this month is focused on PANS, while there is very little to update about PANDAS, other than adding newer citations to support existing text. SandyGeorgia (Talk) 20:15, 23 December 2024 (UTC)

Just reread article, “remains unproven” cites articles 6 years old. Glad found respected doctor to repeatedly treat and cure daughter of this nasty condition. Also ran into doctors first that did nothing and I’m sure would have loved to contribute to slant of this article. 2600:1008:B110:1602:602A:EF65:D3D9:80E (talk) 22:02, 23 December 2024 (UTC)

For ref.

2020:

1. Stanford, Diffusion MRI-based Microstructural Differences.

2. Columbia, Th17 Role in Postinfectious Autoimmune Encephalitis.

3. Yale, Antibodies Binding to Striatal Cholinergic Interneurons.

4. IVIG Treatment in PANDAS/PANS.

2021:

5. Evaluation of Intravenous Immunoglobulin in PANS.

2022:

6. PANS and IVIG.

7. Identification of Ultra-Rare Genetic Variants in PANS.

2023:

8. Stanford, Neuroinflammation in OCD, SC, PANDAS, and PANS.

9. University of Arizona, IVIG Treatment Outcomes in PANS.

10. Columbia, Distinct Th17 and BBB Inflammatory Responses.

11. Stanford, Elevated Antibody Binding in PANS.

2024:

12. Stanford, CSF Findings in PANS.

13. Stanford, Neurological Soft Signs in PANS.

14. University of Oklahoma, Dopamine Receptor Antibodies.

15. Immunological Characterization of an Italian PANDAS Cohort. BeccaW1986 (talk) 22:09, 23 December 2024 (UTC)

“ PANDAS, PANS and CANS are the focus of clinical and laboratory research but remain unproven” then cites 4 articles 6 years old. 2600:1008:B110:1602:602A:EF65:D3D9:80E (talk) 22:29, 23 December 2024 (UTC)

We can easily update the citations if we can move beyond educating about policies and guidelines -- but that content won't change based on adding more recent sources. SandyGeorgia (Talk) 22:32, 23 December 2024 (UTC)

BeccaW1986; you have already been pointed to WP:NOTAFORUM and informed about WP:MEDRS and how Wikipedia uses secondary sources; could you please stop filling the talk page with primary sources? The purpose of talk pages is to discuss edits to improve articles, and we aren't going to "improve" them by doing original research with primary sources. SandyGeorgia (Talk) 22:34, 23 December 2024 (UTC)

Thank you for pointing out the importance of adhering to Wikipedia’s policies, including WP:NOTAFORUM and WP:MEDRS. While I understand the need to rely on high-quality secondary sources for medical topics, dismissing the discussion of primary sources outright risks oversimplifying the process of improving this article. I keep repeating this but feel like it’s being misunderstood.

First, WP:MEDRS does encourage the use of secondary sources for medical claims, but it does not prohibit the inclusion of primary sources altogether. Per WP:PRIMARY, primary sources are acceptable for straightforward, descriptive statements about research or findings, provided they are used with caution and do not involve original interpretation or synthesis. For a developing topic like PANDAS, primary sources may provide necessary context, especially when there is limited consensus in secondary literature.

Second, the assertion that discussing primary sources constitutes “original research” misrepresents the principle of WP:NOR. Original research refers to editors drawing novel conclusions or interpretations from sources, which is not the same as using primary sources to support factual statements that are appropriately contextualised.

Finally, I believe this could benefit from engaging constructively with the suggestions being made. Instead of dismissing contributions wholesale, it would be more in line with WP:CONSTRUCTIVE to explain how the inclusion of specific primary sources could be balanced by corresponding secondary sources or how they might inform potential edits. This approach would foster collaboration and better align with the spirit of Wikipedia’s collaborative editing process.

In summary, while I agree with the need to prioritise secondary sources and avoid turning the talk page into a forum, dismissing primary sources entirely oversimplifies the issue and risks overlooking valuable context that could improve the article’s neutrality and accuracy.

Finally, a personal plea. As per Wikipedia’s guidelines on WP:CIVIL and WP:AGF (Assume Good Faith), I kindly ask that we focus on discussing specific edits or points of contention rather than repeated personal attacks that presume my unfamiliarity with sources, as this can detract from constructive collaboration. BeccaW1986 (talk) 22:42, 23 December 2024 (UTC)

We can't use primary sources to override what secondary sources say about them. It's just that simple. Everyone participating here has engaged the flurry of posts from the last few weeks, I don't see anyone ignoring them, and there have been multiple explanations that the secondary sources (including the new AAP pre-print) are generally in agreement. Having to repeat this is becoming bludgeoning. Once the AAP article is published in final form, a good option will be to turn this article upside down and have it focus mainly on PANS rather than PANDAS, relegating PANDAS to a subset of the broader PANS, but even if the content is re-arranged to that form, the sources are still concluding the same and most of the sections won't change by much. We can make faster progress on that as new editors engage and understand Wikipedia policies and guidelines, so we don't have to churn up bandwidth on things that won't impact article improvement. SandyGeorgia (Talk) 22:54, 23 December 2024 (UTC)

I understand that repeated discussions can be frustrating, but I would encourage us to maintain a more civil tone (WP:CIVIL) in the conversation. Dis missing language might hinder productive collaboration. Keeping our discussions respectful and focused on improving the article is key to maintaining a positive environment, especially when engaging with different perspectives.

You mentioned that “the sources are still concluding the same and most of the sections won’t change by much.” While this seems to reflect a personal belief in a general consensus, it’s important to remain open to the possibility of differing viewpoints, especially as new sources are introduced.

I think we should be cautious about implying that the consensus is final without leaving space for other perspectives, as Wikipedia’s NPOV policy encourages us to represent all significant viewpoints fairly and neutrally.

I appreciate your desire to make progress quickly, but I believe it’s important to ensure that new editors are welcomed and encouraged as they familiarize themselves with Wikipedia’s policies. Using terms like “churn up bandwidth” may unintentionally discourage new contributors. Instead, we can foster a collaborative environment by encouraging new editors to learn and engage with the guidelines, ultimately helping the article improve with more diverse contributions.

Overall, I agree with your goal of improving the article, but I believe we can achieve this more effectively by maintaining a collaborative, respectful tone. BeccaW1986 (talk) 23:05, 23 December 2024 (UTC)

Additional PANS/PANDAS reviews (i.e. non primary), 2023 update

PMID 37742615 Vreeland, A., D. Calaprice, N. Or-Geva, R. E. Frye, D. Agalliu, H. M. Lachman, C. Pittenger, S. Pallanti, K. Williams, M. Ma, M. Thienemann, A. Gagliano, E. Mellins & J. Frankovich (2023). Postinfectious Inflammation, Autoimmunity, and Obsessive-Compulsive Disorder: Sydenham Chorea, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection, and Pediatric Acute-Onset Neuropsychiatric Disorder. Developmental Neuroscience 45(6), 361-374. DOI: 10.1159/000534261.

PMID 37251418 Gagliano, A., A. Carta, M. G. Tanca & S. Sotgiu (2023). Pediatric Acute-Onset Neuropsychiatric Syndrome: Current Perspectives. Neuropsychiatric Disease and Treatment 19, 1221-1250. DOI: 10.2147/NDT.S362202.

WoS 001058295600001 Franklin, M. E., S. Eken & E. Osterlund (2023). Current Research Updates on PANDAS and PANS. Current Developmental Disorders Reports 10(4), 264-273. DOI: 10.1007/s40474-023-00280-w.

Time for a re-write of this wiki page. Sirdragos (talk) 10:41, 7 March 2024 (UTC)

Similar to the section just above this one, I've read those articles and see no specific changes that should be incorporated or are not already covered. Please don't tag an article without enumerating specific deficiencies. SandyGeorgia (Talk) 09:23, 16 December 2024 (UTC)

I suggest incorporating material from the American Academy of Pediatrics Committee on Infectious Diseases, which wrote in its 2021-2024 Red Book the following:

An association between GAS infection and sudden onset of obsessive-compulsive behavior, tic disorders, or other unexplained acute neurologic changes—pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS), as a subset of pediatric acute-onset neuropsychiatric syndrome (PANS)—has been proposed. Data for an association with GAS infection and either PANDAS or PANS rely on a number of small and as yet unduplicated studies. In the absence of acute clinical symptoms and signs of pharyngitis, GAS testing (by culture, antigen detection, or serology) is not recommended for such patients (see Indications for GAS Testing). There also is insufficient evidence to support antibiotic treatment or prophylaxis, Immune Globulin, or plasmapheresis for children suspected to have PANDAS or PANS. Management is best directed by specialists with experience with the presenting symptoms and signs, such as child psychiatrists, behavioral and developmental pediatricians, or child neurologists.
— American Academy of Pediatrics Committee on Infectious Diseases, 2021

ScienceFlyer (talk) 18:51, 13 March 2024 (UTC)

ScienceFlyer do you have access to the newer version? SandyGeorgia (Talk) 09:24, 16 December 2024 (UTC)

I'm aware the 2024-2027 version has been released but don't have a copy. However, PANDAS is not listed among the major changes. ScienceFlyer (talk) 17:49, 16 December 2024 (UTC)

Thanks; then I will update to the 2021 to 2024 version when I get a free moment. (Free moments are hard to come by these days <sigh>). Some of the dated citations are to still accurate information, but can be cited to newer sources. SandyGeorgia (Talk) 18:51, 16 December 2024 (UTC)

ScienceFlyer, I've now had a free moment to think about incorporating this content. My thoughts are that the now older version of the Red Book says nothing different from a) what is already stated in the article from multiple sources, and b) what the new March 2024 2025 AAP publication states and can eventually be used to cite, so I'm wondering about the benefit of adding this now, rather than waiting for March. Ideas? SandyGeorgia (Talk) 16:55, 20 December 2024 (UTC)

@SandyGeorgia Thanks for your analysis. I think you're correct. It's a general restatement of the consensus, as is most of the new AAP Clinical Report. I suggested it as a source mostly because it's relatively up-to-date. And if the consensus is expressed in "Wikipedia voice" vs attributions to specific entities, then there's less need to include it. ScienceFlyer (talk) 17:27, 20 December 2024 (UTC)

Inaccurate

The reference to “controversial” is outdated and misleading.

https://adc.bmj.com/content/109/Suppl_1/A92.1 BeccaW1986 (talk) 22:54, 5 August 2024 (UTC)

That's a primary source; see WP:MEDRS. SandyGeorgia (Talk) 00:16, 6 August 2024 (UTC)

It's a conference abstract that has not been peer reviewed. It's not a good idea to judge studies based on just the abstract. Also the abstract does not say anything about whether or not PANDAS is controversial. ScienceFlyer (talk) 02:23, 6 August 2024 (UTC)

And, the two most recent secondary reviews literally have the word controversial in their titles. One of them calls it "one of the most controversial diseases in pediatric rheumatology". SandyGeorgia (Talk) 06:38, 16 December 2024 (UTC)

https://panspandasuk.org/wp-content/uploads/2024/04/PPWG-Statement.pdf

These conditions were recognised by the UK government as “distinct disease” entities by the UK undersecretary to health in 2023.

UK working group statement refers clinicians to international peer reviewed guidelines (ref. All major UK Royal Colleges). This wiki article is not nuanced enough to be up to date with recent guidelines. BeccaW1986 (talk) 07:28, 16 December 2024 (UTC)

That is a basically a press release from an advocacy organization (see WP:MEDRS) that also explicitly "emphasizes that ... medical knowledge is still developing" in the area of PANDAS. As secondary reviews mention, the hypothesis is still very controversial after 25 years. There has not yet been a source presented on this talk page that contains information that isn't already summarized. SandyGeorgia (Talk) 08:44, 16 December 2024 (UTC) Update: I actually don't know what that source is supposed to be, still investigating. Archive links to old BPNA position are gone, too. SandyGeorgia (Talk) 10:53, 16 December 2024 (UTC)

Perhaps replace controversial with "medical knowledge still developing” then- more impartial BeccaW1986 (talk) 08:46, 16 December 2024 (UTC)

Wikipedia follows the MEDRS sources; secondary reviews clearly state it is controversial. We don't use an advocacy organization to override peer-reviewed secondary literature. Using lower-quality sources to refute best sources would introduce the very definition of POV; every newest review still clearly states PANDAS is controversial, unproven, disputed, debateable, etc. SandyGeorgia (Talk) 09:30, 16 December 2024 (UTC)

With respect, this document is produced by all major UK royal colleges and the advocacy group.

Can you clarify that all wiki articles only use MEDRS sources? BeccaW1986 (talk) 09:32, 16 December 2024 (UTC)

I can't vouch for everything written on Wikipedia (imagine that task!). I can state that you can't use a lower-quality source (as defined by MEDRS) to contradict scores of highest quality sources. SandyGeorgia (Talk) 09:36, 16 December 2024 (UTC)

Scores? Again- the language used is not impartial.

With respect, while wiki rightly prioritises high-quality secondary sources, it’s important to approach evolving areas of medical science with nuance. The UK working group document isn’t solely an advocacy group statement—it was developed with the endorsement of all major UK Royal Colleges, reflecting a consensus among leading clinical bodies. This elevates its significance beyond that of typical advocacy materials. Your over simplification here again calls your impartiality into question

Furthermore, the term

controversial without contextualisation or linking to other conditions previously dismissed with this term risks oversimplifying the current landscape. While some reviews highlight ongoing debate, others—acknowledge PANDAS/PANS as distinct clinical entities, suggesting that the field has moved toward a recognition of these conditions, albeit with areas of uncertainty. Describing this as “medical knowledge still developing” might better capture the reality without introducing unnecessary bias.

Wikipedia articles should aim to reflect the breadth of reputable sources, not solely those that reinforce pre-existing framings. By incorporating perspectives from major clinical guidelines alongside secondary reviews, you could ensure a balanced and current representation of the topic.

Respectfully, could you advise on the process of questioning a second moderator to look at this.

https://panspandasuk.org/wp-content/uploads/2024/12/DHSC-response-to-PPSG-letter-Dec-2024.pdf BeccaW1986 (talk) 09:47, 16 December 2024 (UTC)

You can have a look at WP:DR for dispute resolution possibilities. The first step is discussion; I suggest you become familiar with Wikipedia's sourcing guidelines and continue discussing before escalating to other possibilities. The next step is more eyes; I have pinged WT:MED, the medicine project, for additional feedback. Following that, other steps could be taken, but IMO we're not there yet, as we just started discussing, extra eyes may help you understand Wikipedia's policies and guidelines, as it's not yet clear whether you understand how Wikipedia reflects secondary sources. When the language used explicitly reflects the newest, and almost every secondary review, it's not "impartial"-- it's reflecting what best sources say. Impartial is a different thing than whether or not one agrees with what the sources state or the language they use in describing something as controversial -- indeed, as one source say, one of the most controversial diagnoses in the field. SandyGeorgia (Talk) 10:05, 16 December 2024 (UTC)

From a 2023 review (and many others):

Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) syndrome is one of the most controversial diseases in pediatric rheumatology.

SandyGeorgia (Talk) 10:09, 16 December 2024 (UTC)

Catching up on the links above, relative to the 2021 BPNA Consensus, it seems that after the 2021 BPNA Consensus statement came out, this 2023 effort was launched to figure a path forward in the UK, which in no way negates that the diagnosis remains controversial or anything else stated in peer-reviewed literature. BeccaW1986, I am more clear now on what these links are, but unclear on what you seem to think they state. That the UK is trying to figure out how to manage a set of symptoms doesn't negate any of the rest of the peer-reviewed literature. SandyGeorgia (Talk) 11:08, 16 December 2024 (UTC)

https://watermark.silverchair.com/peds_2024070334.pdf?token=AQECAHi208BE49Ooan9kkhW_Ercy7Dm3ZL_9Cf3qfKAc485ysgAAAz4wggM6BgkqhkiG9w0BBwagggMrMIIDJwIBADCCAyAGCSqGSIb3DQEHATAeBglghkgBZQMEAS4wEQQMRMqnlwtUc51IMN35AgEQgIIC8XM26D1m86adcLtDoCggfHp6e7RJuEjv5nENcrPXu_dU0X3IFbCyq0z6tLfMJK7scNTYT3wUZkRHSXzV6ysziJ26IjFOm6_58P1dd4nPwxJXw9kiG9MEDRZaAKxfELNGu_qzpLXo7dif6PAiSlQh4N_XyKMI3iHc7qNPZW-P3ELqF4bBIuzuXB4tk50t9-LBM7fqJOF08w6waUoNb54PIOxIDeIpvzNgTVIrhLEUaz1AZcvuDty9sEaR_wOySLrBnCqI3OmIoebYBH3_fe6g2420OZDGjQYDdWFDgxNUCzJUfUETxWcWhi09OcQFxba7maX4LXzduqKx-s7RMBfKsX9p9KeqOThZCqy7_rSinxVd0v8DYmE12EkCfMcO-OdsnDh1DNZZRLwBdSd4m4LMRoWDyCUE4qAL920v9pXyR9fnpyNOc5hu7zuDoWZ3Eh9Tx9zwD1ZJvYYZjSK5MMSeMAFwfErCRNRmIh9EAVAmDTtz9X6XYYsKk9tiin_OXzF57pWTsDx72YI8RM0K0x1cLZvnQBzPtGzi9_VoteY0t4BElMu-1n2GgqDgcte22ASaHul1sBmSTOHqQhhx3T3j-JfTuPDXNTxz2DtVaLnbbc2j1HpD62PTw2_eKu0qxHaVufaZmR1HLOzStb2pzuELFOzGmBnglH3N3rAtuGuYXJO2ghKD0IqWqbHRyXHe0GjOneYPQ3Zo4pqkrY1ac3jqMTBkpKaKyIm2KYY1UyWr1zT1b5hTXw5StfkZhoH8H6IFr_kV_9ZxEgZchs7AHH9vISyAiBt0oJGhdJrbDtowwWN8bwcfCjjfSGQKhq-ReTIzD4tIiQvNGeo8iCaFEEpeh-wpk05T44KbFRpBnUH04RL4lZv_uqUHJil6oHtewZQ8bswYh4rYNgB5Ew6JTfGbJ_nsOA6HywLSvHaFE33wq9NYpSEh2S_AfF7hwaWmaBikdMJfEze_tl8pRlGtZx7Jv1g7QrcwYZEto9MBjCZchP7FVg BeccaW1986 (talk) 13:14, 17 December 2024 (UTC)

I've had a read of the BPNA Consensus statement on childhood neuropsychiatric presentations, with a focus on PANDAS/PANS. The document and summary Based on our review of the literature and published reviews (such as those above) the BPNA acknowledges that the entities currently known as PANDAS and PANS require further work regarding validity of diagnostic criteria and that treatment lacks strong evidence. does not acknowledge these "entities" actually exist, beyond being "proposed" or "suspected" by some. The BPNA recommendations are based on existing treatments for accepted diagnostic entities, which often have good evidence for them. They warn against maverick lone doctors exceeding the boundaries of their professional expertise. They warn against using unproven "treatments targeting inflammation or immune-modulation" which can have serious side effects and "may also risk diverting the focus away from effective symptom-directed treatment". So basically, "These children are ill and your job is to treat them with evidence based medicine for known disorders", and "Don't be a quack".

I'm finding it hard to see anything in that document that would encourage us to think it is accepted by BPNA that PANDAS/PANS actually exists or that treating a child in the way proposed by some advocates of PANDAS/PANS would be professionally acceptable to that body. They don't go as far as saying that we have evidence it doesn't exist, hence the standard "needs further research" conclusion, rather than a "can we all please stop wasting our time on this distraction". This idea has been around for a quarter of a century and hasn't become accepted. -- Colin°^Talk 13:29, 17 December 2024 (UTC)

It was accepted yesterday by the American Association of paediatrics and has been recognised by Baroness Merron this month

Here is a link to the full text (click on pdf).

https://publications.aap.org/pediatrics/article/doi/10.1542/peds.2024-070334/200384/Pediatric-Acute-Onset-Neuropsychiatric-Syndrome BeccaW1986 (talk) 13:30, 17 December 2024 (UTC)

https://panspandasuk.org/wp-content/uploads/2024/12/DHSC-response-to-PPSG-letter-Dec-2024.pdf BeccaW1986 (talk) 13:31, 17 December 2024 (UTC)

BeccaW1985, "it was accepted yesterday" by AAP is an overinterpretation of the AAP source, exactly along the lines of what Colin states. Should that pre-print be published as is, then something can be said about it, but "accepted as a diagnosis by AAP" is not what that source states; it is important to be meticulous in medical writing and avoid overinterpreting sources. Neither does the Baroness Merron letter state what you interpret it to state.

If the AAP article's final publication does not change from the pre-print, then more can be said about PANS, but I don't see anything significant that it changes about PANDAS. SandyGeorgia (Talk) 14:22, 17 December 2024 (UTC)

It is your the agreement of statements like Colin’s (now deleted?) “ So basically, "These children are ill and your job is to treat them with evidence based medicine for known disorders", and "Don't be a quack".” That makes me question the potential bias here.

The fact that Colin’s sweeping and inflammatory language is given more sway than the more measured discussion in the pre print is why second eyes are needed.

The AAP leadership formed an expert panel of experienced clinicians to provide their perspectives and guide the development of this clinical report. The expert panel members were recruited from relevant subspecialty areas (e.g., rheumatology, neurology, child and adolescent psychiatry, infectious diseases, developmental-behavioral pediatrics, and primary care) and focused on the existing evidence basis associated with PANS. The panel met 3 times to discuss relevant questions and reach consensus on diagnosis, treatment, research needs, and other key issues. These discussions were facilitated by senior leaders of the AAP. To support the expert panel’s deliberations, the AAP commissioned an external evidence review of pertinent literature on PANS/PANDAS to gather the comprehensive base of published research.

The AAP recognizes that PANS is likely a valid diagnosis, although the diagnostic process is challenged by a lack of well-accepted evidence to guide the clinician.

The only conclusion I can draw is that either SandyGeorgia may hold a strong bias against this topic or appears reluctant to consider emerging evidence. BeccaW1986 (talk) 14:27, 17 December 2024 (UTC)

Read the AAP statement pre-print, which says exactly what Colin and I and basically every other source are saying. After the AAP pre-print mentions a lack of evidence, it then says it seeks diagnosis and treatment grounded in evidence. Wikipedia follows sources--it doesn't get ahead of them.

Please review Wikipedia's policies on personal attacks and focus on content and avoid repetitious accusations of bias on talk pages. If you have personal comments about conduct, please take those to user talk pages. SandyGeorgia (Talk) 14:49, 17 December 2024 (UTC)

Respectfully disagree. It seems nonsensical to, in one post, encourage further discussion and then dismiss polite comments with reference to further evidence, as personal attacks.

But I will rather to the user talk pages if this is the most suitable forum. BeccaW1986 (talk) 14:53, 17 December 2024 (UTC)

I read the APP document now. It is more accommodating in its language than the BPNA one. It still agrees with the BPNA one that supposed treatments along the lines of infection/immunology are currently entirely without evidence and may cause harm. It should be remembered that it is a report, and in the US there are people with MD after their name who believe all sorts of things, and noting that "there exists people who believe X" in a report doesn't mean those things have consensus agreement. They also note a degree of lobbying wrt insurance. As with many things, legal battles in the US can cloud and distort and act as a real barrier to science.

I think the fact that it isn't a guideline stating "here's how to diagnose" and "here's how to treat" indicates firmly that Wikipedia should not do likewise. This remains a speculative disorder with support from some medical professionals and considerable rejection of their attitude wrt evidence based treatment. -- Colin°^Talk 16:18, 17 December 2024 (UTC)

Thank you Colin, I appreciate this more measured response after your last post which I found to use language which lacked compassion for impacted individuals.

However, I find this interpretation underplays the significance of the document and the APA in general. The report reflects the views of an expert panel across relevant specialties, commissioned to evaluate the available evidence. It references PANS as a likely valid diagnosis - this was the point of contention. I agree that more research is needed in terms of treatment. To dismiss the weighting of this as simply “people who believe X” minimizes its weight and the contributions of major medical bodies involved. To me this approach reflects the emerging consensus to treat PANs patients with compassion while navigating uncertainties in a measured way.

Furthermore, it’s inappropriate to question the credentials of any of the figures afiliqted at this level of the APA which such a sweeping statement as “who believe all sorts of things”.

I also think you’re making a mistake to equate differing global approaches (like US vs BPNA) with distortion or legal interference. American insurance system may play a role in shaping policies, but that doesn’t invalidate the scientific process behind these reports. Each reflects evolving medical consensus in its respective context, and dismissing one based on perceived external factors risks undermining balanced, evidence-based discourse.

My previously stated replacement for “controversial” reflects this more nuanced positioning-that medical knowledge is still developing—is a far more balanced framing for Wikipedia than reducing PANS to speculation. Using the most up-to-date, comprehensive evidence, including the AAP report, ensures the article remains neutral and does not dismiss the clinical realities whilst still accepting the ongoing controversy around treatment. BeccaW1986 (talk) 16:41, 17 December 2024 (UTC)

I don't think there's a difference to my response, only to the source document's language. The first document, and my comments on it, is nothing to do with having or lacking compassion for impacted individuals, which as a healthcare professionals in western medicine means "treat them with evidence based medicine for known disorders". They are politely calling those advocating for this quacks and warning them they could be accused of exceeding their "professional expertise" in promoting certain treatments. Should a patient suffer harm, don't say we didn't warn you when you get a nasty letter from the GMC.

The AAP has taken a different approach to how they talk about PANS. I'm not sure why. Perhaps its a cultural thing or perhaps because it is a different kind of document. But their ultimate recommendations aren't much different in that your treatment would follow the same approach if PANS/PANDAS had never been speculated. For example, antibiotics are for treating acute infection that has been confirmed, not for long term use or in the absence of infection.

They describe the immunomodulatory therapies as the most controversial and lacking evidence. They do note "Some experts recommend their use" but counter this with the far stronger "Many subspecialists and other medical experts are skeptical about the use of immunomodulatory therapies to treat patients with PANS, given the lack of demonstrated evidence of underlying CNS inflammation or autoimmunity for many children in whom PANS has been diagnosed." The contrast between "some" and "many" indicates that even in the absence of consensus, they acknowledge that those promoting this are in the minority. The AAP note the legal/insurance pressure I mentioned: "Despite the lack of compelling evidence to support efficacy in treating PANS, advocacy for IGIV treatment is occurring across the country and becoming more widespread. Several states have passed laws mandating insurance coverage of IGIV for PANS/PANDAS treatment" This could not be more clear. A "lack of compelling evidence" means those writing the report were not convinced. They are reporting that they live in a country where some doctors and patients/parents advocate for this, and you might live in a state where the insurance company has been pressured by "advocates" into offering treatment that is not evidence based. This is not a document where there is a consensus of professionals reporting they are glad that an evidential treatment is finally being made available by insurers.

If there is (or there becomes) a US/UK split on this, then that needs to come from commentary in reliable sources, not me or anyone else here speculating. I see some difference between the two documents but even the US one notes that the minority advocating for specific PANS treatments don't have "compelling evidence" to back their advocacy up. Their statement "The AAP recognizes that PANS is likely a valid diagnosis, although the diagnostic process is challenged by a lack of well-accepted evidence to guide the clinician." is challenging to the BPNA document which does not appear to accept any child could actually be so-diagnosed. I'd be interested what sourced commentary says about this word "likely". It is not anything like as firm as if the sentence lacked "likely" (lots of people thought Harris was likely to win the US presidency) but nor is at negative as "not". -- Colin°^Talk 20:10, 17 December 2024 (UTC)

Thank you for the in depth reply and summary of the article.

Please do not misunderstand I do understand the concerns about unclear guidance regarding treatment, and I am not disputing that aspect. However, I believe referring to the condition itself as a ‘controversial hypothesis’ is no longer appropriate. Recent reports, including the AAP’s findings, acknowledge PANS/PANDAS as a likely valid diagnosis, even while emphasising that medical knowledge is still developing. I suggest updating the language to reflect this nuance and align with evolving expert consensus. BeccaW1986 (talk) 20:23, 17 December 2024 (UTC)

As I said, I'd be interested to know what other sources will make of "is likely a valid diagnosis". A child with a pair of grazed knees might have a "Paediatric Educationally Induced Superficial Open Wound": they got pushed over by a big boy in the school playground. Does giving something a name help? Grazed knees caused by bullies in school playgrounds aren't really a diagnostic entity worth creating. There's no treatment specific to school playgrounds and lots of other causes of grazed knees. -- Colin°^Talk 20:42, 17 December 2024 (UTC)

Thank you for this analogy. However, it does not align with the complexity of the conditions under discussion. Unlike grazed knees, as all the cited sources note, the described conditions are associated with specific neuropsychiatric symptoms and suspected immunological processes. Giving something a name in medicine is not merely labelling; it provides a framework for understanding, further research, and potential interventions. This is particularly relevant when symptoms are severe, persistent, and clearly impact a child’s functioning. Comparisons to trivial injuries risk minimising the lived experiences of affected children and families. BeccaW1986 (talk) 20:48, 17 December 2024 (UTC)

The discussion is interesting, but Wikipedia must follow sources over opinions. High-quality sources unequivocally state that PANDAS is controversial; in fact, even laypress sources do same (sample). SandyGeorgia (Talk) 20:53, 17 December 2024 (UTC)

The introductory term "controversial" and the way it is framed here risks reducing the nuanced discussion presented in those very cited MEDRS sources to a single, loaded descriptor. Many of these studies acknowledge ongoing research, differing interpretations, and emerging evidence, which warrant a more precise and less polarising articulation. BeccaW1986 (talk) 20:59, 17 December 2024 (UTC)

I gave the examples of grazed knees because it is neutral, not because it minimised a serious illness or, as you put it earlier, lacked compassion. Becca, one of our guidelines is WP:AGF and I'll ask you to assume everyone on this page recognises how difficult neuropsychiatric disorders can be and absolutely wants the best care for those affected. Could you stop tone policing what people write with an assumption we are all horribly biased and want the worst for people or are mocking an invented disease.

As Sandy notes, the word "controversial" comes from our sources, sometimes it is so major a feature that the word, or "myth" appears in titles. If, as Sandy notes, the balance of sources, of authorities, still regard it as controversial and view much or all of it with scepticism, then Wikipedia should likewise.

A diagnosis needs utility. That some see no point and even harm in a particular diagnosis, and others find it helpful, is a valid state of affairs. It doesn't mean one side is right and the other deluded. There will always be a great deal of caution around those promoting treatments that lack evidence of efficacy but run a risk of (great) harm, and both documents I looked at are clear on their opinion about the state of evidence there. Diseases and disorders are given names sometimes on the flimsiest of speculation about an underlying cause or associated symptoms. All the great "syndromes" were invented before people could image brains or examine DNA. The state of our understanding of what goes on in the brain remains very limited.

Clearly WP:NPOV is important to this article. You mention below that "controversial" carries a POV and I agree, there are people who claim there is controversy about settled things, or that there is more controversy than there is, in order to play politics and win arguments. If there was no reasonable controversy over this proposed diagnostic entity, then it would be quite wrong for Wikipedia to claim there was. But clearly there is. The BPNA document can't even bring itself to accept anyone might actually be diagnosed with this or that any of the proposed treatments have merit. NPOV doesn't mean our article can't contain points of view, but rather that it reflects a fair balance of the significant points of view in proportion to those in the best reliable sources and authorities. I don't underestimate how challenging that policy is for this subject. -- Colin°^Talk 08:51, 18 December 2024 (UTC)

Hi Colin,

Thank you for your detailed reply. I want to clarify that referencing tone and etiquette isn’t “policing” but a reminder of WP:CIVIL and WP:AGF, which help maintain a collaborative environment. For example, WP:BITE encourages us to ensure that discussions remain welcoming, particularly for newer editors.

Regarding “controversial,” my concern is that its usage here may not fully reflect the nuanced context of the cited sources. As you acknowledge, it is essential to ensure that terminology aligns proportionately with the sources’ perspectives to maintain WP:NPOV. The framing of “controversial” in this open g reference risks oversimplifying these views, potentially leading to unintended implications.

Additionally, the term “hypothesis” seems misaligned with real-world medical practices where people are actively being diagnosed. Not amending the article risks undermining the lived realities of patients, particularly younger readers, and may inadvertently cause harm—a consideration aligned with WP:NOTHARM.

Many thanks again for the time. BeccaW1986 (talk) 09:16, 18 December 2024 (UTC)

At present the AAP document does not say "The AAP recognizes that PANS is a valid diagnosis". I agree, at present people are currently being diagnosed with PANS by a minority of doctors. That doesn't mean the diagnosis is valid any more than that people who buy cough mixture at the chemist are purchasing an evidential cure. At present, the AAP does not think this is valid. It thinks it might be. Like people thought Harris might be "likely" to win the election. Like people think we might one day travel to Mars and back. WP:CRYSTAL.

I think the APP document (once published) could influence how our article discusses the current state of affairs wrt the controversy. But it is not at the level of where we can say the matter is settled, that the consensus is these diagnoses are valid, that there is compelling evidence that the hypothesis as to the cause and thus possible treatment exists. And so on. This might be a baby step towards acceptance of PANS. Or it might be wishful thinking or even just politically accommodating language in the face of a US controversy. -- Colin°^Talk 09:47, 18 December 2024 (UTC)

Colin, I can't diagnose you but I think you must be insane. John Erickson 1962 (talk) 22:39, 19 December 2024 (UTC)

We have at least four recent (WP:MEDDATE and WP:MEDRS) citations to sources of higher quality than this report, which is still only a pre-print, in the article for "controversial", and there are more. Changing the language under those circumstances would be POV. SandyGeorgia (Talk) 20:49, 17 December 2024 (UTC)

As noted in this discussion prior to the APA document, the cited sources meet WP:MEDDATE and WP:MEDRS. However, the way "controversial" is framed in this wiki article against the framing of the article's information in its entirety, risks oversimplifying and framing the issue in a way that does not encompass the complexities presented within those very cited sources.

If not framed correctly "controversial" carries connotations that are inherently loaded, introducing a POV concern of its own.

A more nuanced articulation is warranted—one that reflects the ongoing research, emerging understanding, and clinical debate without reducing the discussion to polarising terminology. Striking this balance will, I believe, provide a more neutral and informative framework for readers. BeccaW1986 (talk) 20:55, 17 December 2024 (UTC)

First, we have to distinguish between PANDAS and PANS, and most of the discussions on this page are blurring the line. The AAP pre-print is about PANS. We should keep the distinction in these evolving hypotheses (PANDAS, PITANDs, CANS, PANS) clear as we work towards any article (content or naming) changes that might occur if/when the pre-print is finalized to publication. Both PANDAS and PANS are controversial, but PANS seems to have replaced PANDAS as the main hypothesis.

I've explained elsewhere on this page the issues with using advocacy organizations as sources. We would only cautiously use the Tourette Association of America as a source, but their medical and scientific advisory boards encompass leading tic disorder researchers, so their wording may help in your understanding for the purposes of this discussion, recalling that PANDAS originated as a hypothesis related to tics.

• Tourette.org on PANDAS and PANS

Until further scientific evidence becomes available, it is our position that the vast majority of children who present with tics have primary tic disorders that are not caused by immunologic factors. At this time, there is not definitive evidence that Strep (or the immune response to Strep) causes tics, but there is also not definitive evidence that Strep (or the immune response to Strep) cannot cause tics; thus, more evidence is needed before a definitive answer can be reached regarding the relationship between tics and streptococcal infections. Caution is thus advised with regard to clinical or other decision making based on the current level of available evidence. In short, Tourette Syndrome is a validated diagnosis, in contrast to PANDAS and PANS, which are working hypotheses.

Regarding the evolving hypotheses, the AAP's position in the pre-print -- after stating that there is a lack of well-accepted evidence about PANS -- is that diagnosis and treatment should be grounded in evidence. Nothing in that refutes other sources which state that PANDAS and PANS are controversial; indeed, that they have issued this report reinforces the existence of the underlying controversy and its effect on treatment and diagnosis of children. If and when the article is published, we can state their position about PANS. That position is not that "PANS is an accepted diagnosis" and it is not about PANDAS. Adjusting the AGF-ometer is a faster route to improved content. That PANDAS is controversial is not polarizing; it's sourced fact. How we discuss PANS is evolving along with the research. SandyGeorgia (Talk) 15:09, 18 December 2024 (UTC)

Thanks to all the editors for their thorough review and discussion. I generally agree with the points raised by SandyGeorgia and Colin. An observation: One aspect of the new AAP clinical report is that it's peer-reviewed (and formally authored by the "American Academy of Pediatrics Board of Directors"). As such, most would call it an accepted manuscript, not a preprint (or "Prepublication Release" as the AAP refers to it).

I do know of at least one scientist who will not cite a paper until it's formally published. But for Wikipedia, I wonder whether that standard is appropriate given that the substance of the report is not expected to change. However, waiting at least until formal publication would provide a chance for additional secondary sources to accrue. The AAP has already updated its site in accordance with the clinical report, has published an AAP news article, and has made a Facebook post. The news article says formal publication will be in the March issue of Pediatrics. ScienceFlyer (talk) 05:37, 19 December 2024 (UTC)

I note the press release "news" article by "Melissa Jenco, Senior News Editor" says "The AAP believes PANS is a valid diagnosis and is providing guidance on diagnosis and treatment in the new report". This is different to the language of the journal "The AAP recognizes that PANS is likely a valid diagnosis, although the diagnostic process is challenged by a lack of well-accepted evidence to guide the clinician" and "The AAP is committed to working collegially with other physicians and scientists to learn more about this condition and develop a dependable and clear evidence base that supports evaluation, diagnosis, and treatment to address a specific child’s symptoms. Until that goal has been reached, the AAP recommends a deliberate and cautious approach, grounded in evidence, and focused on helping children who have the symptoms of possible PANS." which very much crystal balling.

My guess is they have decided that arguing about whether it exists or not is not getting anyone anywhere constructive. That those who don't think it exists will humour those who do, and then argue about the evidence base for diagnostic tests, treatments, etc, which at the moment.... don't really support doing anything you wouldn't have done before. Oh, and here's a bunch of tests and treatments we definitely put in the quack category, so will you all stop that please. -- Colin°^Talk 12:05, 19 December 2024 (UTC)

This Wikipedia article mostly concentrates on PANDAS, which is explicitly related to strep. It seems clear that PANDAS is still squarely a hypothesis. On the other hand, PANS (pediatric acute-onset neuropsychiatric syndrome) does not have the word infection in it. The diagnosis is based on symptoms and abruptness. It's a syndrome. The AAP says, "Although the cause is still under investigation, the manifestations may follow a recent infection." [emphasis added]. With regard to the statements that "PANS is likely a valid diagnosis" and "Much remains unknown about the condition, however.": The wording reminds me of the preponderance of the evidence standard in law, where a claim has to be 51% likely (or more likely than not) to qualify. It's a low bar. It would have been less ambiguous if the AAP had discussed motivations for considering PANS a distinct disorder other than for research purposes. ScienceFlyer (talk) 17:03, 19 December 2024 (UTC)

Thanks for the info about the pre-print, ScienceFlyer. Because there is no deadline, and pre-prints can change, I feel safer waiting for the published version before adding this content, but I'm willing to be convinced otherwise. SandyGeorgia (Talk) 18:48, 19 December 2024 (UTC)

Also, from the pre-publication, citing this article now could lead to mirroring on other sites of information that might be later corrected:

This is a prepublication version of an article that has undergone peer review and been accepted for publication but is not the final version of record. ... This paper may contain information that has errors in facts, figures, and statements, and will be corrected in the final published version.

It appears that have publicized the pre-print to "expedite access to this information", but we can wait to be sure we've got the final version. SandyGeorgia (Talk) 09:11, 20 December 2024 (UTC)

I can see then that PANDAS has a bigger hill to climb in terms of acceptance than PANS, since it hinges explicitly on the claim about a common childhood infection. But PANS could share similar issues with ROGD in that the name itself describes "symptoms and abruptness" but nobody believing it has merit as a diagnosis thinks the cause is other than social contagion (or infection in the case of PANS). For example PANS/PANDAS UK says "In PANS, the development of symptoms can be triggered by various different infections. A variety of infections have been reported as triggers for PANS. Reported infections include Lyme disease, flu (for example H1N1), mononucleosis (mono), and mycoplasma bacteria." as though all these infectious causes were proven triggers. In their section on causes: Recent scientific research suggests PANS and PANDAS are caused by an abnormal immune and/or inflammatory response to infection. In the case of PANS, the abnormal immune/inflammatory response that causes symptoms has been reported to have been triggered by a variety of different infections. The abnormal response in PANDAS is triggered by Group A Streptococcal (GAS) infection. There's no doubt there that the cause is a response to an infection, it just doesn't name it in the title. -- Colin°^Talk 19:08, 19 December 2024 (UTC)

Interesting point @Colin- That's quite the gulf between the advocacy group (requiring an infection as a purported trigger) and the AAP (not requiring an infection). In isolation, the AAP seems to be presenting PANS as a syndrome similar to ADHD (where overdiagnosis is a perennial topic). But when zooming out, it leaves open the question of whether PANS criteria has now been more clearly broadened to include other syndromes. ScienceFlyer (talk) 23:55, 19 December 2024 (UTC)

Would it not be more productive to clarify how the criteria are designed to capture a spectrum of symptoms rather than subsume other syndromes? BeccaW1986 (talk) 07:06, 20 December 2024 (UTC)

The analogy to the “preponderance of the evidence” standard in law is an interesting perspective but not necessarily applicable to medical research. Scientific validity is based on peer-reviewed studies, reproducibility, and clinical consensus—not on arbitrary thresholds of likelihood. The AAP’s cautious language likely reflects the evolving nature of the research rather than a “low bar” for evidence. This is standard for emerging medical conditions, and it does not undermine the validity of PANS as a clinical syndrome.

Regarding the motivations behind recognizing PANS as a distinct disorder- it is speculative to suggest that its classification is primarily for research purposes without citing reliable sources. This interpretation risks introducing bias and may misrepresent the intentions of the AAP and other medical organizations. BeccaW1986 (talk) 07:16, 20 December 2024 (UTC)

Please read the sources in the article; it is not Wikipedia that is suggesting that the PANS hypothesis originated for research purposes. SandyGeorgia (Talk) 08:56, 20 December 2024 (UTC)

I agree, SandyGeorgia issued a warning to me saying they would have me removed if I tried to edit the page. This makes me think that they are not following the consensus, and instead monopolizing the page and removing anyone who disagrees with their bias opinions and who tries to edit. John Erickson 1962 (talk) 22:27, 19 December 2024 (UTC)

No, I did not say that. [1] I recommend you understand the normal consequences of editwarring on Wikipedia, which is you can be blocked by admins. You can also be blocked by admins for personal attacks and disruptive editing. SandyGeorgia (Talk) 08:55, 20 December 2024 (UTC)

Outdated Information

PANDAS is no longer "hypothetical." This type of article is just what insurance companies want. John Erickson 1962 (talk) 15:56, 4 October 2024 (UTC)

See the first paragraph here; if you have a MEDRS-compliant source to the contrary, please provide it. SandyGeorgia (Talk) 06:40, 16 December 2024 (UTC)

Advocacy

The PANDAS network is an advocacy organization. The essay at Wikipedia:Advocacy may be helpful, in conjunction with Wikipedia's medical sourcing guideline and the sections on Other sources and Independent sources wrt advocacy for positions not supported by medical consensus. SandyGeorgia (Talk) 09:55, 16 December 2024 (UTC)

American Academy of Pediatrics recognizes PANS

The AAP believes PANS is a valid diagnosis and is providing guidance on diagnosis and treatment in the new report. It also is calling for robust research to improve care for the condition. The report [Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS)]https://publications.aap.org/pediatrics/article-pdf/doi/10.1542/peds.2024-070334/1750244/peds_2024070334.pdf is available at https://doi.org/10.1542/peds.2024-070334 and will be published in the March issue of Pediatrics. PandasParent (talk) 11:12, 17 December 2024 (UTC)

Thank you for the note and the pre-print; that will be good to discuss after the article is published. The pre-print summary states:

The AAP recognizes that PANS is likely a valid diagnosis, although the diagnostic process is challenged by a lack of well-accepted evidence to guide the clinician. Much remains unknown about the condition, however. This clinical report explicitly acknowledges the pressing need for research and enrollment of patients in multicenter studies to explore the potential etiology, epidemiology, evaluation, and treatment for PANS. The AAP is committed to working collegially with other physicians and scientists to learn more about this condition and develop a dependable and clear evidence base that supports evaluation, diagnosis, and treatment to address a specific child’s symptoms. Until that goal has been reached, the AAP recommends a deliberate and cautious approach, grounded in evidence, and focused on helping children who have the symptoms of possible PANS. The AAP further recommends that the best care for children with potential or diagnosed PANS is provided in a medical home, is family centered, and is delivered by a multidisciplinary team.

Should the final publication state same, the source would be useful for Pediatric acute-onset neuropsychiatric syndrome (PANS).

From the sources and description in this (PANDAS) article, Pediatric acute-onset neuropsychiatric syndrome (PANS) is a post-PANDAS hypothesis that eliminated (unproven) tic disorders as a primary criterion for PANDAS and "placed more emphasis on acute-onset OCD, while allowing for causes other than streptococcal infection. Since PANS encompasses a broader group than PANDAS, children may be more likely to be labeled with PANS and receive testing and treatments promoted for PANDAS that lack scientific support."

PANS is most often discussed in relation to PANDAS, but this article, if published, would appear to change that.

The AAP wording lack of well accepted evidence could be helpful in relation to other posts on this talk page about "no evidence" vs. "not supported by evidence"; that is, the cited source appears to imply the opposite of some interpretations on this page. After specifically mentioning the lack of evidence, it says that the AAP recommends diagnosis and treatment be grounded in evidence. SandyGeorgia (Talk) 14:42, 17 December 2024 (UTC)

Harmful, Biased Article

If you, the author, cannot see how this article you wrote comes across as biased based on the language you use in the opening paragraph, then you need to get someone else to help you write a less biased article. You could talk about the many, many studies and research that has been done within the last 4 years, but instead you only briefly mention that some studies have not been repeated or need to be further researched. John Erickson 1962 (talk) 01:58, 19 December 2024 (UTC)

@John Erickson 1962 Wikipedia is not just written by one person. Many people contribute to the editing proccess. There is no single "author" of a wikipedia page. This page in particular has goten a lot of input from several editors. Could you please link some of the research done within the last 4 years? I'd read over WP:MEDRS before doing so to make sure you know what to look for. IntentionallyDense ^(Contribs) 02:52, 19 December 2024 (UTC)

You undid wording to remove "controversial" from the lede, claiming it was "misleading". I don't think that was justified, this is well sourced in the body and lede.

"Controversial" is not a judgement on validity or a demonstration of bias, it simply means it is a subject of controversy - which, according to plenty of WP:RS it is. Void if removed (talk) 10:05, 19 December 2024 (UTC)

John Erickson 1962 it seems you have not read or fully digested WP:MEDRS. Wikipedia reports what secondary sources say; analyzing primary studies or the "many, many studies and research [from] the last 4 years" isn't what Wikipedia is for -- there are plenty of blogs and message boards where that is done, but Wikipedia requires reliable secondary reviews for most medical content. Those secondary reviews that have analyzed those primary studies indicate that much of what we know is based on animal studies, there is a paucity of data, and the topic is controversial. Also, please do not restore disputed edits once they have been reverted without gaining consensus, lest you be blocked for edit warring. SandyGeorgia (Talk) 18:44, 19 December 2024 (UTC)

It seems you, SandyGeorgia, have a personal bias and you are personally defensive against anything being updated to this page to reflect more up to date secondary sources about the treatment of PANDAS. The AAP has come out with new information on it this week which you can read online and it has not been published officially yet. I wonder what your field of expertise is. John Erickson 1962 (talk) 21:43, 19 December 2024 (UTC)

Easter egg link in lead

An IP made this edit in August 2021. That content was then edit warred by multiple editors (not me :) until the article was semi-protected in November 2021. After the semi-pp, I repaired a lot of citations, reorganized, and added content from newer sources, but did not notice the Easter egg link of "hypothetical diagnosis" via a redirect from List of questionable diagnoses to List of diagnoses characterized as pseudoscience. I am not aware of PANDAS being reliably cited as fringe or pseudoscience. Before the IP edits in August 2021, the lead described PANDAS as a hypothesis, not as pseudoscience. That Easter egg needs repair, unless someone has a pseudoscience or fringe source. I'm not sure what link should be used instead. SandyGeorgia (Talk) 13:45, 19 December 2024 (UTC)

It probably depends on the explicit definition/criteria used on that "List" page. I tend to prefer Quackwatch's separation of "fad diagnoses" into various categories including "Not Scientifically Defined or Recognized" and "Scientifically Recognized But Inappropriately Diagnosed". The demarcation problem in distinguishing science from pseudoscience is an oft-discussed philosophical problem. It's more of a spectrum then a bright line. A cursory look at PANDAS advocacy sites shows that most who diagnose it are alternative medicine practitioners, though I'm not sure if there's a source for this. There are sources for non-specificity of the certain tests marketed to diagnose PANDAS, and perhaps those could be more appropriately referred to as pseudoscience. Related: A recent editor added PANDAS to the alternative medicine sidebar as well. ScienceFlyer (talk) 17:16, 19 December 2024 (UTC)

There may be (many?) quacks preying on desperate parents and using unproven treatments and over diagnosing an unproven condition when OCD or TS applies. But some of the best known researchers in the field are engaged towards finding ways to treat children presenting to them with severe neuropsychiatric symptoms, and that compassionate concern to seek evidence-based approaches is what the AAP report reinforces. They may not know what "it" is or where "it" comes from, but they know the children need valid treatment for disabling symptoms.

I'm not thrilled that Wikipedia labels PANDAS/PANS as pseudoscience in the lead, even if that link is hidden in an Easter egg (that even I missed until now). I am not aware of sources supporting that. When you see James Leckman's name on this page, it's hard to view the current research directions as pseudoscience. I don't know what to do about the alternative medicine sidebar, but I am fairly certain that Leckman and other researcher's names I recognize in the field don't practice alternative medicine. SandyGeorgia (Talk) 18:25, 19 December 2024 (UTC)

Many legitimate clinicians and researchers, including pediatric neurologists, immunologists, and psychiatrists, are actively involved in diagnosing and studying PANDAS and related conditions. For example, the National Institute of Mental Health (NIMH) has published materials discussing PANDAS and the role of mainstream medical professionals in its diagnosis and treatment. Suggesting that the field is dominated by alternative medicine practitioners without evidence could misrepresent the state of clinical practice.

If there are reliable sources that support this point, I encourage including them for transparency. However, unless such evidence is provided, it may be more appropriate to omit or rephrase this statement to reflect the range of perspectives in the medical community

https://panspandasuk.org/ask-the-experts/ BeccaW1986 (talk) 07:11, 20 December 2024 (UTC)

Would Working hypothesis be a better link than List of diagnoses characterized as pseudoscience? SandyGeorgia (Talk) 19:03, 19 December 2024 (UTC)

That fits better both with the current wording, and with the broad coverage in MEDRS (ie, controversial, hypothetical, but not pseudoscience). Have changed it. Void if removed (talk) 22:40, 19 December 2024 (UTC)

Other sources should be considered.

I don't think any reasonably intelligent individual would deny the validity of PANDAS and PANS. The problem is that there are not enough peer reviewed sources yet for Wikipedia. I do not think that primary sources like hospitals, universities, doctors, and organizations should be ignored on technical issues, but that is how it is on Wikipedia. I guess what I'm saying is Wikipedia is NOT the place to go for medical information or advise, especially because it is written by random people. There are some people who will deny the existence of something up until every anspect of it has undergone every technicality. There is a lot of research going on at the moment on the topic of PANS/PANDAS, and there will likely be progress made towards official guidelines. John Erickson 1962 (talk) 02:32, 20 December 2024 (UTC)

John, claiming that those who disagree with you can't possibly be "reasonably intelligent individual[s]" isn't going to work on Wikipedia. And it doesn't stand up to scrutiny when there are intelligent healthcare professionals on both sides of this controversy. The best sources currently are hugely cautions about these terms and don't appear to consider them valuable outside of concepts worthy of further research. They reject the immunological treatments or diagnostic tests that proponents are pushing. The evidence for them is not "compelling". But that may change. You're going to have to wait for that change and for the healthcare professionals to form a consensus about diagnosis and cause and treatment before Wikipedia can do so. -- Colin°^Talk 08:45, 20 December 2024 (UTC)

There are numerous secondary reviews, and Wikipedia cites them. SandyGeorgia (Talk) 09:22, 20 December 2024 (UTC)

From the pre-publication or the AAP report, to be published in March 2025:

• After discussing the lack of well-accepted evidence, The AAP is committed to working collegially with other physicians and scientists to learn more about this condition and develop a dependable and clear evidence base that supports evaluation, diagnosis, and treatment to address a specific child’s symptoms. Until that goal has been reached, the AAP recommends a deliberate and cautious approach, grounded in evidence, and focused on helping children who have the symptoms of possible PANS.
• After discussing how the PANDAS hypotheses evolved to the PANS hypothesis, There is no listing of PANS in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-V), which provides diagnostic criteria for recognized mental health conditions, or the International Classification of Diseases, 11th Revision (ICD-11) coding system, which is the global standard for recording health information.
• Before listing all of the unproven treatments they don't advise or recommend, The contents are intended to aid the pediatric health care provider in evaluating, diagnosing, and treating sudden-onset and severe behavioral changes in children that could indicate potential PANS and in supporting these children and their families.
• The AAP report describes the hypothesis for PANDAS' pathophysiology as unproven based on current evidence.
• Discussing etiology, the AAP report summarizes the problems with PANS The lack of longitudinal high-quality research, consistent diagnostic criteria, and a national database hamper a precise estimation of the prevalence and incidence of PANS.
• As a preface to advising standard treatments for known conditions, the AAP report says, Regardless of the child’s age, anxiety, tics, and OCD are more likely to be a primary psychiatric disorder that is unrelated to PANS. This consideration will aid pediatric health care clinicians in differentiating PANS from other mental health conditions.
• With respect to problems occurring in (differential) diagnoses, the AAP report says: The patient history should thoroughly assess previous mental health problems, because patients with preexisting mental health challenges may have symptoms related to that condition rather than to a new, acute-onset syndrome such as PANS and because patients with PANS frequently have mental health comorbidities including anxiety, ADHD, and autism spectrum disorder. ... A review of primary health care and school records is often helpful and may disclose prior neurodevelopmental or neuropsychiatric evaluations and issues that family members might not recognize as being relevant to the current history. ... A comprehensive evaluation by an experienced child and adolescent psychiatrist or psychologist is necessary to eliminate other disorders that present with similar neuropsychiatric syndromes.

And then they go on to mention all the standard treatments and proven treatments for OCD, TS, and strep, along with the numerous treatments and tests they don't recommend for suspected PANS or PANDAS. The AAP report offers very little new, although it can be used to update citations, and does not deviate from what the Wikipedia article, based on numerous other WP:MEDRS-compliant sources, already says. We have plenty of sources. We will have a new source (when it is published in March) that says basically same, and is written in a way to encourage further study and to help practitioners towards more accurate diagnosis, and to avoid the unproven treatments being visited upon families facing disabling symptoms.

Now that the faulty link in the lead has been repaired, there is very little new here to see, but the AAP report will be useful in updating citations after it is published in final form. SandyGeorgia (Talk) 09:57, 20 December 2024 (UTC)

The problem is that it can be over diagnosed, but that does not mean the real version does not exist. People who have severe OCD, Tic, or Anxiety disorders would love to claim when they see children with PaNDAS that "thats what it's like having my tic/anxiety disorder!" "It's severe just like that!" The problem is, yes, OCD, anxiety, and or tic disorders normally are caused by either abnormalities in neuronal activity, structural abnormalities, or epigenetic and environmental factors. These factors can cause OCD and anxiety or tic disorders, and these disorders can be severe. With PANDAS/PANS, the children do not have these disorders until exposed to strep or another trigger and it is accompanied by extreme neurological issues like extreme and obvious, sudden, personality changes and handwriting decay. Severe, extreme OCD is always the main symptom, likely caused by the areas of the brain near the stem being affected. With these children, environmental factors need to be ruled out, and when they are it is obvious what is happening. In the standford studies and Columbia studies scientists literally were able to se inflammation in the MRIs deep in the brain structure of children with PANDAS by comparing it to children without PANS/PANDAS who needed scans. John Erickson 1962 (talk) 19:16, 20 December 2024 (UTC)

Wikipedia typically prefers analysis of primary studies from secondary reviews, which to my knowledge, has been done in this article. If you see a place where the Wikipedia article states that PANDAS/PANS "does not exist" -- in WikiVoice, or otherwise -- we can examine the sources used or needed to cite or correct that text. If that is the case, please point out the exact wording in the article that needs attention, and we can have a source-based discussion about improvements. SandyGeorgia (Talk) 19:24, 20 December 2024 (UTC)

I believe the issue lies not so much in any single sentence but in the overall framing of the article, which creates a biased narrative. For instance, the statement, “Some clinicians consider PANDAS to be an overdiagnosed condition attributed to unrelated illnesses,” presents one perspective but fails to mention the many clinicians who have spoken out about its prevalence and the growing body of research supporting its validity.

Additionally, the focus on parents and advocacy groups is presented in a way that seems to belittle the lived experiences of thousands of families. The article and its accompanying talk page often frame parents as overly emotional or misled, reducing their experiences to hysteria or internet-fueled misconceptions. This framing is reductive and dismissive, ignoring the other side of the telescope (so to speak) IE the legitimate concerns and struggles faced by those advocating for their children. BeccaW1986 (talk) 22:22, 23 December 2024 (UTC)

BeccaW1986 you've been editing this page since 5 August, and have a couple dozen edits here; by now, you have oberved how others use secondary sources on this page, and you should supply a secondary source to support your suggested improvements. Here's one suggestion of a template that might help with your talk page contributions (SAMPLE):

Please change the existing content in the Mechanism section that says the sky is pink and cited to PMID 34204991

to

The sky is often described as pink at sunset,(cited toPMID 34204991) but it is most often described as blue.(with new secondary review PMID)

That provides a concrete suggestion that others editors can discuss and reach consensus on. Concrete suggestions will save us all time, and the more the talk page is filled with general complaints that don't use sources, the less time editors have to actually work on improvements. And we're all busy volunteers. SandyGeorgia (Talk) 23:25, 23 December 2024 (UTC)

Ok. I feel I did this with my comment on the opening sentence. Will take time to review. With thanks. BeccaW1986 (talk) 23:28, 23 December 2024 (UTC)

BeccaW1986, I can't tell what you are referring to re "with my comment on the opening sentence" (which I don't see in this section, started by another editor); that is one consequence when a talk page becomes clogged with long complaints that are short on specifics and not actionable. If you need help with understanding how to use diffs to point to previous comments or edits, please ask on your user talk page and I'll be glad to give examples. Or you can view the edits of other editors here in edit mode, to learn Wikipedia markup. (Valuable editor time has been misspent on this page over many years because every time PANDAS makes the news, complaints that are short on specifics and not based on compliant sources overwhelm the page.) SandyGeorgia (Talk) 23:36, 23 December 2024 (UTC)

Huge thanks BeccaW1986 (talk) 23:37, 23 December 2024 (UTC)