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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)

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)

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)
Misplaced Pages 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 Misplaced Pages (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.
Misplaced Pages 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 Misplaced Pages'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 Misplaced Pages's policies and guidelines, as it's not yet clear whether you understand how Misplaced Pages 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° 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. Misplaced Pages follows sources--it doesn't get ahead of them. Please review Misplaced Pages'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)

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 Misplaced Pages:Advocacy may be helpful, in conjunction with Misplaced Pages'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 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)
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