Talk:PANDAS/Archive 4

Archive 1

Archive 2

Archive 3

Archive 4

"To be classified as a disease"

"To be classified as a disease, a disorder must show that a particular part of the body is affected or that the symptoms occur if and only if the trigger or cause occurs.[not in citation given][15]" As discussed earlier, this isn't quite right, and is using a source not related to PANDAS when we have info from PANDAS sources discussing the difficulties in assessing the validity of the hypothesis. See, on on our source list:

• Murphy Husted Edge 2006, PMID 16536361, text beginning with "For a given disease, evidence of an autoimmune etiology ... followed by a description of direct and indirect ways of demonstrating autoimmunity, including animal models.
• Giovannoni 2006, PMID 16536362, "To establish a causal link between an infectious agent, such as strep ... follow by discussion of Koch postulates.
• Singer and Williams 2006, PMID 16536362 (of the aforementioned "authors who seem to have no idea what a carrier is") contains a long and relevant discussion of the principles of immunology, followed by the Witesbsky criteria for establishing a pathogenic role for antibodies. (I suspect Singer does in fact have some knowledge of what a "carrier" is.)

These are more relevant than the current text and citation; we don't need to go outside of the PANDAS sources to discuss this. SandyGeorgia (Talk) 20:33, 12 March 2012 (UTC)

I like the reference in Givannoni 2006 as that brings in the Koch postulates which is exactly why the Yaddanapudi mouse study was so important. It's a very high bar to cross the Koch hypothesis (as I presume you know). Buster23 (talk) 02:57, 17 March 2012 (UTC)

Modified the classification body here [1] to include the reference to Giavannoni 2006 PMID 16536362. I have tried to follow WP:INLINE while paraphrasing the material. I believe it is accurate and frames the issue, but would appreciate a second set of eyes. I think Giavannoni did a fair job of characterizing why proving SC and PANDAS as an autoimmune disease (and GABHS as causal) will be quite difficult. Buster23 (talk) 06:40, 18 March 2012 (UTC)

OK, so we now have a paragraph in the article that has no relationship or context to anything else said in that section, which is a bit confusing. B23, I have asked you numerous times on this page if you want to collaborate in sandbox, and I gave you an update of a week's work in sandbox, asking for your commentary. Are you aware that I can't just copy things from one place to another on Wikipedia, as there are licensing issues? Which version are we working on? It would be good to have this text in context, once everything is done, and if I have to work in two different places, that will just slow down progress-- I was halfway through the 2010 sources, and ready to start on 2009. Do you want to collaborate or not? SandyGeorgia (Talk) 15:09, 19 March 2012 (UTC)

I've been trying to collaborate with you. Above you wrote "I plan to work in User:SandyGeorgia/PANDAS sandbox, and suggest that there is enough text to be written about proposed causes and mechanisms that a sub-article on that area will be useful; issues, corrections, etc can be noted at User talk:SandyGeorgia/PANDAS sandbox. The sandbox text is still quite rough at this stage." This seemed to indicate that you were working there. I did not understand that you were inviting me to work in your sandbox. I was trying to fix the sentence that you flagged on the main article. The new paragraph is about the criteria about why the classification is difficult. Giovannoni did a nice job talking about this. I haven't seen that same detail in the later reviews (for example the Koch postulates). Buster23 (talk) 05:58, 20 March 2012 (UTC)

Diagnosis verses identification

Yes while I agree that technically if there are no "ICD10" codes one is not able to officially diagnose PANDAS. However most diagnosis in medicine are unofficial and this fine distinction can be discussed in the section in question without changing the name of the overall heading IMO. But I am fine with people changing it back if they feel strongly. Doc James (talk · contribs · email) 13:15, 19 March 2012 (UTC)

Thanks for that feedback, Doc-- I'll be catching up tomorrow, but I'd prefer before I do any more work that Buster23 decides if we're working on the Sandbox version or here (I've asked him numerous times on this page to collaborate in sandbox). It's a bit frustrating to put a week's worth of work into Sandbox, getting halfway through covering everything in every source, providing an update on this talk of my progress, and then find changes to the article here which will make it hard to sync the sandbox and version here while respecting Wikpedia's licensing requirements, along with comments about sources I've clearly indicated several times I'm still working through, while inviting Buster23 to comment on the sandbox progress, which s/he hasn't done. It's also curious to find B23 characterize the statements of the outgoing chair of the Tourette Syndrome Association Medical Advisory Board (which is a who's who of well respected TS researchers) published in a journal described as "fringe", particularly when his same view is later endorsed and expanded by TS researchers from no less than three different instituations. I seem to be spinning my wheels unnecessarily. I'll resume getting through all of the sources once we decide where we're working, since I've already got a lot of work into sandbox but am not sure we're collaborating here. SandyGeorgia (Talk) 14:56, 19 March 2012 (UTC)

I have answered multiple times why Swerdlow is inappropriate. Please choose a second review that has the content you wish to include. Repeating myself, Swerdlow has no reference to PANDAS in the article, Swerdlow discusses Tourettes Syndrome and not PANDAS -- there is a single reference to Streptococcal triggered symptoms, but it would be WP:SYN to conclude that that is referring to PANDAS since it is thoroughly unclear whether the other criteria of PANDAS are being satisfied -- especially as PANDAS isn't mentioned. The article is tagged on its cover page as a commentary, the comment about desperate parents is not repeated in other reliable reviews, no primary references or studies are provided to support the quote. Hopefully that is enough. Please provide a second reliable quite from the "expanded by TS researchers" above. You seem quite fixated on this quote and yet it is quite a minority opinion given that it does not appear in the more than 40 reviews we are going through. I have zero problem with you using any other reliable secondary source here. I'm objecting to the Swerdlow quote for WP:SYN, WP:FRINGE. I respect the person, just not the use of the reference as it doesn't obey the guidelines we put down for the article. Buster23 (talk) 06:10, 20 March 2012 (UTC)

With respect to the sandbox progress, how does that material get "commented on"? Do we bring that back to this talk page? Buster23 (talk) 06:10, 20 March 2012 (UTC)

I am driving home from skiing and will catch up tomorrow. Somewhere up on this talk page, where I invited you to work in sandbox, I gave the link to the sandbox talk page and asked you to comment on progress there, and then I provided a list of the sources I had gotten through. User:SandyGeorgia/PANDAS sandbox ... please comment on talk there, so we can keep our work in sync. The problem with working on two versions of the article is how we sync them at the end and respect licensing. When I'm home tonight, I'll post on sandbox talk a list of exactly which sources I've included and a summary of what I still need to do, and then address how to sync the additional work you've done in the article. It would be helpful if you would look over what is in sandbox so far, recognizing the limitations I alreadly listed above (it's not anywhere near done, all sources aren't in yet, some overquoting will need to be removed, and prose will need to be smoothed out). It is frustrating that this talk page grows so unwieldy when I have to keep repeating things I've already said. The sandbox is now out of sync with the work you did here, which concerns me because we have dangling text now in Mechanism, with no indication to the reader of why that text is there or why it's relevant. When we've got partial work done, it would better serve us and our readers to have it in Sandbox until it's ready for prime time. SandyGeorgia (Talk) 15:45, 20 March 2012 (UTC)

External links

I agree the link that mentions the book is promotional, but I'm not sure it rises to the level of an WP:ELNO #5. It seems there is networking info under "support" for families. Maybe there is another reason why it should be a ELNO though. Biosthmors (talk) 15:44, 26 March 2012 (UTC)

1. We have an WP:AGF issue with the IP posting the links. [2]
2. The OC Foundation link had a typo in the URL [3] and was removed as a dead link. [4] It seems generally OK as an EL (since Jenike is on board and it is a legit organization), although it's somewhat strange that the PANDAS page is written by a "mom and advocate", so we should discuss whether it should be included and whether it adds any info to the article not already avaiable in reliable sources. WP:ADVOCACY is an issue in this article and on the internet, as mentioned by reliable sources. Wikipedia is WP:NOT a directory or support group, but strangely, I can't locate a DMOZ (Open Directory Project) PANDAS group that we can link to, as recommended by WP:MEDMOS (see sample at Tourette syndrome#External links, where DMOZ is used to avoid linking to every support organization on the planet per MEDMOS)-- perhaps someone else is able to find an Open Directory/DMOZ link for PANDAS? Alternately, the OC Foundation link may belong in the OCD article.
3. The Saving Sammy site (unlike the Pandas Resource Network or the OC Foundation) has no mention of an advisory or any other kind of board, and is registed to the author of the Saving Sammy book. [5] It adds no info not available from third-party reliable sources, and it seeems to serve mostly to promote the book and raise money for MGH. [6] SandyGeorgia (Talk) 16:22, 26 March 2012 (UTC)

2. If you think it's generally OK then let's add it back?

3. The site does offer networking info[7] which I don't think would be covered in third party sources. Biosthmors (talk) 17:47, 26 March 2012 (UTC)

2. Generally OK, except subject to the issues I raised for discussion. Specifically, is there no Open Directory entry for PANDAS, since Wikipedia is not a support group, why is that page written by a "parent advocate", and should it instead be added to obsessive-compulsive disorder? SandyGeorgia (Talk) 18:27, 26 March 2012 (UTC)

3. Again, Wikipedia is not a directory or support group, there should be a DMOZ entry for that, see MEDMOS. SandyGeorgia (Talk) 18:27, 26 March 2012 (UTC)

2. I'll leave that up to your judgement. Well, it is easy to point out that the page's subject is PANDAS.[8]

3. I don't think not being able to use a dmoz template is an ELNO and linking to a group which has a support group subpage does not make Wikipedia a support group. Biosthmors (talk) 19:06, 26 March 2012 (UTC)

Perhaps I'm not being clear. The question is, can anyone else find the DMOZ entry? I must be missing it, as it's hard to believe there isn't one (I suspect the problem I'm having with searching is that the word PANDA refers to so many other things). Linking to a page which exists mostly to promote one book is a problem (see guidelines at Wikipedia:MEDMOS#External links). If there honestly isn't an entry in the Open Directory, the folks wanting to add these links should create a DMOZ entry, and add the DMOZ link here, per MEDMOS. Wikipedia is not a support group or a directory; MEDMOS allows links to DMOZ to address that problem and so that we don't end up with link farms to every support group in the world. As an example, Tourette syndrome does not link in External links to the Tourette Syndrome Association (except via DMOZ); notable organizations have their own entries. We're discussing here two entries that add nothing new, when in fact the third and fourth (pandasresourcenetwork and NIMH) also run afoul of MEDMOS and should be accessed via DMOZ-- I haven't objected to pandasresourcenetwork because it at least has a medical advisory board, but according to MEDMOS, these two don't actually belong either. SandyGeorgia (Talk) 19:34, 26 March 2012 (UTC)

To be honest, I'm not a fan of linking to DMOZ. Can't remember the last time I used it for anything. It collects low-quality links along with the good. I think Google generally does a better job. Also, a collection of "pro" or advocacy sites would become unbalanced per WP:ELPOV. Which links are so rich in quality medically-reviewed information that they would exceed an FA on PANDAS? Colin°^Talk 20:46, 26 March 2012 (UTC)

I'm not a fan of proliferation of ELs; if the only useful information from the site is linking to a networking/support group, I don't think this is an appropriate venue for that (not directory and all that). Yobol 21:26, 26 March 2012 (UTC)

Recent addition

I have reverted recent additions to the lead as it appears to place an WP:UNDUE emphasis on the page of one research group in the NIMH (placing emphasis on it in the 2nd sentence of the entire article). I invite the IP to address the issue here, rather than edit war over the issue. Yobol (talk) 23:18, 23 May 2012 (UTC)

Isn't it a little bit ridiculous to take the NIMH (National Institute of Mental Health) not as a valid source!? This Pandas article here on Wiki is unbalanced and will be unbalanced as long as state run research institutions like the NIMH (which have an excellent reputation) are not taken as more valid than research done by some scientist somewhere in the country. There will always be scientists out there with different oppinions - in the end it's important what the official authorities draw from the results. And what can be an authority if the NIMH isn't one?! Is it patriotic or logical to call the "National" (!) NIMH just "a" research group? So, please, skip your pseudo-scepticism and be realistic, please. Thank you. ANDREW

If you're referring to this edit, naturally it's taken seriously by the NIMH since the hypothesis originated there and was fueled by them. Their reputation or lack thereof is not the issue here (original research): the preponderance of reliable sources is, and there are few (to none) secondary reviews that do not take issue with the hypothesis as formulated. Further, the NIMH is not a third-party, independent reliable source on the matter (they are directly involved in promoting the hypothesis which independent researchers haven't found conclusive supportive evidence for), and giving their view attention in the lead is UNDUE, particularly since there is so little agreement with that view from multiple independent third-party researchers and secondary journal reviews. See Talk:PANDAS/Sources for a list of secondary reviews compliant with WP:MEDRS.

Regarding this edit, the content is simply untrue; the hypothesis has not been proven at all, although some rodent studies have provided some support for some parts of the hypothesis, while other studies have failed to find support for the hypothesis. Please see WP:MEDRS, WP:UNDUE, and WP:NOTNEWS-- we don't give undue weight to primary studies, particularly when we have multiple secondary reviews discussing these rodent studies in context and providing both sides of the story. SandyGeorgia (Talk) 14:53, 24 May 2012 (UTC)

Differential diagnosis

Singer 2011, PMID 22197466 has a table of differential diagnoses for the broader CANS (all acute-onset, not just GABHS-related, which subsequently became PANS, to account for older patients in pediatric populations). I haven't found a similar list of differential diagnoses for PANDAS in any source. Is anyone aware of one? In the event we aren't able to find one, since this article also covers PANS, should we include that differential diagnoses list in that section? SandyGeorgia (Talk) 13:27, 14 March 2012 (UTC)

Yes, Dale and Murphy both have such differentials. I'll add the PMID when I'm back at my desk. Buster23 (talk) 17:36, 17 March 2012 (UTC)

Here you go, PMID 12615982 for Dale, PMID 18024776 for Wild, and PMID 16970875 for Pavone. I thought the Pavone one had a nice table in comparison. There's also a recent Murphy article, but I think it is more on the clinical presentation. Buster23 (talk) 18:53, 17 March 2012 (UTC)

I will work on these once you decide which version we're working on. Are you collaborating on the sandbox version, or shall I abandon the week's work of getting through almost half of the sources? SandyGeorgia (Talk) 15:06, 19 March 2012 (UTC)

I did not find a list of differential diagnoses in Dale, Wild is about chorea, and I don't have full-text of Pavone. I don't think any of these have a full differential diagnosis list such as Singer's; if they do, please point me at 'em. SandyGeorgia (Talk) 01:56, 28 March 2012 (UTC)

The references to "CANS" should include the Omission of Conflicts of Interest in “Moving from PANDAS to CANS.” Specifically, Critics of PANDAS published a paper against prompt treatment for children in January 2012. At that time they did not disclose their affiliations with pharmaceutical companies like Psyadon – who develop tic suppression drugs. The Journal of Pediatrics has issued a correction for the undeclared disclosures. The following disclosures were inadvertently undeclared for the authors of the article, “Moving from PANDAS to CANS,” J Pediatr 2012;160:725-31.

Harvey S. Singer, MD, receives research grant support from Psyadon (study of ecopipam for tic suppression), the National Institutes of Health (study of glutamate modulators for tic suppression and PET imaging studies in Tourette syndrome), and JAEB Center for Health Research (consultant for levodopa pilot study for pediatric eye disease). He serves on the Editorial Board of The Neurologist.

David S. Wolf, MD, PhD, and Jonathan W. Mink, MD, PhD, declare no conflicts of interest.

Donald L. Gilbert, MD, MS, receives research grant support from Psyadon and Otsuka.

Roger Kurlan, MD, receives research grant support from Psyadon, Phytopharm, and Pfizer. http://www.jpeds.com/article/S0022-3476(12)00172-2/fulltext--Werelived (talk) 03:17, 19 September 2012 (UTC)

a variety of sources, including more readable sources?

For example . . .

• Saving Sammy: Curing the Boy Who Caught OCD, Beth Alison Maloney, New York: Crown Books (Random House), 2009. A mother writes about her son's struggles with OCD. He was never treated for a strep infection, but his blood tested positive for antibodies to strep. A number of antibiotics worked for him short-term, but only the antibiotic Augmentin worked for him longer term.

And that's exactly what this is, one mother's account.

And this same mother also has a website. To her credit, for she's also an advocate.
http://www.savingsammy.net/

posted by Cool Nerd (talk) 21:17, 7 January 2014 (UTC)

Please see WP:MEDRS. SandyGeorgia (Talk) 21:38, 7 January 2014 (UTC)

I am familiar with this page thank you very much.

And I realize that our gold standard is review articles in professional journals. But . . . I am not a doctor. And odds are, you probably aren't either. And even if you are, most of us are not. And so, when we summarize review articles, we might make mistakes, including mistakes of emphasis. I think it's actually less mistaken-prone to use what we might call middlebrow sources like WebMD, Mayo Clinic, etc. And actually, I'm glad we have both and can include both.

Okay, then when something has real controversy, we're going to depend on the establishment to summarize the dissident or minority view? Again, I think the best answer is both. We should use both the establishment summar(ies) and also sources where the person who is holding the minority view is speaking for himself or herself.

And with Beth Maloney's book, I don't really see where it's controversial. She is primarily saying that children and adolescents with OCD issues should have a chance to get a blood test for antibodies to strep (unless the infection has been too recent, in which case the body may not have yet made many antibodies). This is probably close to official recommendations of pediatric medical associations. Her main contribution might be more in highlighting the disjunction between theory and practice.

If it makes a difference, she does have a page where other people, including some doctors, are recommending her book.
http://www.savingsammy.net/endorsements.php
Now, this isn't a slam dunk by any means. But she is a sincere person trying her best. The book is generally exactly what it's advertised to be, one mother's account of one child. And at the end of her book, she also includes 8 pages of references, with some going back to the 1950s on the topic of Sydenham's chorea. Cool Nerd (talk) 22:51, 7 January 2014 (UTC)

PANDAS

Hello, the increasingly large community of PANDAS parents and medical providers is not in agreement with your choice of words like "hypothetical" and "theorized". We already do and will continue to take action to get current, research based information about PANDAS to the general public without the incorrect ambiguity that you state about the disease. Please see this article and many others that show no ambiguity: http://online.liebertpub.com/doi/abs/10.1089/cap.2014.0084 What do you have against medical truthfulness and PANDAS? This seems petty and malicious. I am a medical provider and a PANDAS parent. Are you aware that Stanford University Children's Hospital has a PANDAS clinic? Your wikipedia definition of PANDAS is shameful.Pandasisreal (talk) 15:36, 22 November 2014 (UTC)

Here is what the American Academy of Neurology says:

"PANDAS is defined as the abrupt onset or exacerbation of a tic or obsessive compulsive disorder (OCD) in prepubertal children, considered to be triggered by a Group A β-hemolytic streptococcal infection, but there is controversy in the medical community regarding this syndrome as a disease entity."

There is no mention of this syndrome on the European Association for Neurology website, but a linked site contains this definition.

"P.A.N.D.A.S. is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections, a hypothesized condition describing a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette syndrome, and in whom symptoms are believed to worsen following strep infections such as "strep throat" and scarlet fever."

The European Federation of Neurological Societies website does not seem to mention this syndrome at all. Nor does there appear to be any mention of it on the American Psychiatric Association site.

The current language of the article appears to describe current medical consensus remarkably well. Formerly 98 (talk) 17:58, 2 December 2014 (UTC)

PANDAS

Hello, the increasing large community of PANDAS parents and medical providers is not in agreement with your choice of words like "hypothetical" and "theorized". We already do and will continue to take action to get current, research based information about PANDAS to the general public without the incorrect ambiguity that you state about the disease. Please see this article and many others that show no ambiguity: http://online.liebertpub.com/doi/abs/10.1089/cap.2014.0084 What do you have against medical truthfulness and PANDAS? This seems petty and malicious. — Preceding unsigned comment added by Pandasisreal (talk • contribs) 15:26, November 22, 2014 UTC

Question

Sandy,

Do you get paid for monitoring that PANDAS page on Wikipedia? Just curious. You describe Wikipedia as "tearing itself apart". I describe Wikipedia's representation of PANDAS as "tearing families apart". It's irresponsible and downright criminal to post such one sided information that hurt these children. There are many parents of children with this syndrome who are so desperate to get medical attention while others simply adjust web pages. When a mother is trying to prevent her child from jumping out of a moving vehicle at 60 miles an hour just to arrive at a hospital where she learns "this diagnosis is controversial" there is a problem.

Clearly I know not to use Wikipedia as a resource. Anyone with any level of education knows this. However, many therapists do just that. I agree that the researchers do not yet know what causes PANDAS. Please tell me how I can change this article without having it reverted back to its original content. I can quote research articles all day long. In addition, my comments are absolutely verifiable. Why are they being removed? Why do you get to decide if my content is removed? I am very qualified to speak to this issue. I am an expert in my field. I am also an expert with regards to the desperation of this syndrome. What is the motive in keeping information from the public that could help save just one child? My child is better. He will be on antibiotic (antiviral) therapy for another 9 months at least. He was jailed, locked up in a psych hospital all because of the "controversy". I will not sit by and allow that to happen to other innocent victims of one sided posting.

Respectfully, Elizabeth Harris La Bella e Famosa, CEO CelluSleek, CEO Alleia Skin, CEO Spa Group America, CEO — Preceding unsigned comment added by 71.236.48.137 (talk) 03:44, 2 December 2014 (UTC)

See also contribs from Betty Jeanne Harris, and La Bella e Famosa. SandyGeorgia (Talk) 12:12, 3 December 2014 (UTC)

Multiple responses

Please have a look at Template:Recruiting, WP:MEAT and WP:SOCK. Wikipedia content is not determined by "vote", or any number of users showing up wanting to add unsourced personal opinion, rather by adherence to Wikipedia guidelines and policies. The relevant sourcing guideline for this article can be found at WP:MEDRS, which explains that secondary reviews of primary source studies are used to source content of articles such as this one. Edits that are based on primary sources, unsourced, or anecdote are removed.

Also, edits to articles are discussed on article talk pages, not user talk pages, because many editors (not just one) contribute to these articles, and discussions should be with the community, rather than directed at one user. Elizabeth Harris, I can explain general Wikipedia guidelines in more detail more specifically to you if you let me know which user talk page I should respond to, but for the purposes of this page, MEDRS should be a good start. SandyGeorgia (Talk) 12:33, 3 December 2014 (UTC)

Many people think that because Wikipedia can be edited and the changes show up instantly, it should be right on the cutting edge of knowledge: as soon as new discoveries emerge, they should be written right into Wikipedia, rather than wait for the long editing cycle of the ICD, DSM, etc. The problem is, that's almost exactly the opposite of how our editorial policies work. When new findings are announced in medicine, history, the social sciences, etc., the Wikipedia community does not have the resources or expertise to collectively determine whether these findings are true and accurate. We defer to the judgment of the relevant communities of experts, be they historians, physicians, biologists, etc. So Wikipedia is never going to be on the "cutting edge" of new research information; we're going to follow what the standard medical authorities say until such time as they change. Does this mean we sometimes get things wrong? Yes. There are undoubtedly plenty of examples of accepted medicine that will eventually be overturned, some very dramatically, the way Barry Marshall determined the cause of most peptic ulcers. But medicine is also full of new discoveries that seem promising but ultimately can't be reproduced or are later found to be erroneous. By following the lead of the standard references, we may sometimes be wrong, but we won't make people *worse* off than if Wikipedia never existed and they went to the usual sources of information.

So if the basic problem here is that Wikipedia reflects the "conventional" view of PANDAS and you don't feel that to be accurate, editing this article is the last stop on the road to getting it changed. Focus on spreading awareness in the medical community, getting granting organizations to sponsor clinical studies, and so forth (which I'm sure people are already doing). When PANDAS and the mechanism behind it is accepted among physicians in general, rather than a few avant-garde practitioners, there's going to be no problem changing this article, because there will be a proliferation of secondary literature that describes it. Yes, that's much more difficult than editing and debating here. But if Barry Marshall had just drunk a flask of H. pylori and come here to edit-war on the peptic ulcers article based on his experiences, he wouldn't have gotten a Nobel Prize and wouldn't have convinced all that many people either. I know this probably isn't the answer you wanted to hear, but it is how we operate, and not just in medicine; established sources take priority over exciting discoveries until the community of experts accepts the novelties. Choess (talk) 23:55, 4 December 2014 (UTC)

Semi-protected edit request on 27 January 2015

please add www.pandasppn.org to external links

Newyorkny12345 (talk) 18:50, 27 January 2015 (UTC)

You're going to have to explain the connection to the subject matter, otherwise that a spam link. Mlpearc (open channel) 21:24, 27 January 2015 (UTC)

Not done: please establish a consensus for this alteration before using the {{edit semi-protected}} template.  ^B E _C K ^Y _S A ^{Y L} E _S  21:25, 27 January 2015 (UTC)

Semi-protected edit request on 23 July 2016

Victoria Paige (talk) 03:43, 23 July 2016 (UTC)

Not done: Blank request — JJMC89 (T·C) 05:42, 23 July 2016 (UTC)

External links

Some such as this [9] appear to be little more than spam.

Another one of the added links was simply duplication of one that was already there. Doc James (talk · contribs · email) 02:22, 16 March 2017 (UTC)

Consensus building

In response to an OTRS alert, I reinstated three links from reputable sources, ie. two universities and The Boston Globe. I assume the first two have been peer reviewed or at least reviewed by a qualified editorial board. That adds up to five external links, which is hardly a "link farm" by any standards, the argument used to revert my changes. To the best of my understanding, these articles are in no way controversial and describe patient cases.

That being said, I have absolutely no bias towards one or the other POV regarding PANDAS if indeed there is any reason for controversy.

If any controversy exists, please try to reach consensus on the issue here instead of reverting bona fide additions. I will also remin you that Wikipedia is a tertiary encyclopedia, and as such relies on reputable secondary sources. Additionally, I should state that administrators who actively edit a specific article should be careful or refrain entirely from using administrative tools on the same page.

Thank you! Asav | Talk 14:31, 17 March 2017 (UTC)

@Asav: Perhaps I am confused but the stated purpose of the links is to provide a point of view that the article does not currently, according to the IP user making the edits. If a point of view is missing from the article, it should be written about and cited with these links- not merely have the links added. Is there a reason this is not being done? 331dot (talk) 15:43, 17 March 2017 (UTC)

Ideally, an article should contain no point of view (POV) at all, but state verifiable facts. In Wikipedia the term "verifiable" is usually meant to refer to statements in reputable sources, preferably peer reviewed ones in an article like this which explains a scientific term, such as PANDAS. In lieu of that, text that has been vetted by a professional editorial board is acceptable as well. User pages, blogs aso. are not.

As for External links, they do not necessarily contain reference material underpinning one particular statement in the article (which would belong under "References"), but should be taken as a "Further reading" section, covering either the subject in its broader sense or use cases and the like. Nevertheless, such links must adhere to Wikipedia's verfifiability standards, and the three links added certainly do that. Asav | Talk 16:09, 17 March 2017 (UTC)

Disruption

We have ongoing disruption by multiple new accounts. Have thus protected for two weeks. Doc James (talk · contribs · email) 00:45, 17 March 2017 (UTC)

This edit was also copied and pasted from here Doc James (talk · contribs · email) 00:54, 17 March 2017 (UTC)

Unfortunately, the goal here is apparently to present only a one-sided view of PANDAS as dictated by a doctor who doesn't "believe" in the disorder. The page is inaccurate. PANDAS is not a "hypothesis." It is a neurological disorder recognized by the National Institute of Mental Health and supported by hundreds of research studies. Most of the information cited on the page is at least seven years old and often older. Moreover, referring to Stanford Medicine, The Massachusetts General Hospital, The Wall Street Journal and other prestigious publications as "spam" demonstrates the bias of the individual who apparently feels entitled to force feed a misleading view of a serious yet treatable disorder. PANDAS is a well-accepted neurological disorder triggered by infection. It is not a "hypothesis." It is "controversial" only because a minority of physicians label it as such...including Harvey Singer who in his misguided paper "From PANS to CANS" failed to cite the various drug companies from which he accepted funding. When he got caught, those had to be subsequently supplied in a follow up article. The NIMH devotes a substantial online presence and discussion to the disorder. There are hundreds of research studies supporting it. There are PANDAS clinics at Stanford and MGH. There are PANDAS centers of excellence at various universities throughout the United States. Yet there remain a stubborn few in the medical community who make it their life's work to refuse to accept the science, apparently preferring for children to remain needlessly ill. It is reminiscent of the twenty year battle it took for h-pylori to be "accepted" as the cause of peptic stomach ulcers. Patients died waiting for the medical community to come around. [posted with parts redacted from User talk:74.75.247.168 by blocking admin El_C 04:34, 17 March 2017 (UTC)]

I have removed not only copyright infringement but content like this

"Many physicians and psychiatrists have propagated the controversy even after the mechanism of transmission to the basal ganglia was proven in the Columbia study. Pharmaceutical companies manufacturing psychiatric medications influence the physicians to promote these psychiatric medications instead of simple antibiotics and natural supplements. Since natural supplements are available to the general population at a price people can afford they are often disregarded by medical community as they are unable to make money off the sale of such products."

Which was unreferenced.[10]

I did not write the existing content. But well referenced content is being removed. Doc James (talk · contribs · email) 18:21, 17 March 2017 (UTC)

Article title

@Dino245: I have reverted a good-faith move of this page from PANDAS to PANDAS (disorder) together with a redirect of PANDAS to Great panda. Per WP:SMALLDETAILS this page at PANDAS is correct. I have amended the hatnote for clarification. Shhhnotsoloud (talk) 09:01, 14 September 2019 (UTC)

References requiring updates

Unable to update due to the lockdown. The three References below have links that either require edits or their removal, as they no longer go to the purported articles cited. All others appeared functional but a doublecheck is always welcome. Listing them here for future clean-up.

12. "Guidelines published for treating PANS/PANDAS". www.nimh.nih.gov. NIMH

15. Leckman JF, Denys D, Simpson HB, et al. (June 2010). "Obsessive-compulsive disorder: a review of the diagnostic criteria and possible subtypes and dimensional specifiers for DSM-V" (PDF). Depress Anxiety. 27 (6): 507–27. doi:10.1002/da.20669.

16. Kurlan R, Kaplan EL (Apr 2004). "The pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS) etiology for tics and obsessive–compulsive symptoms: hypothesis or entity? Practical considerations for the clinician" (PDF).

--Sappler67 (talk) 07:25, 23 November 2021 (UTC)

Leckman (2010), PMID 20217853 had a faulty URL overriding the PMC; I removed the faulty link and the PMC now works.

Kurlan (2004), PMID 15060240 is no longer freely available, so I removed that link. Sources are not required to be freely available, although it is nice when they are. The alternative is to visit a library. I will dig in to my files, if needed, to see if I still have a hard copy.

The Guidelines citation led me someplace interesting, which will require a days’ work. That citation was not linking to a WP:MEDRS source, rather a press release from the NIMH. When looking in to the history to see who added that, I found a large series of edits made while I was on a long Wikibreak. Those edits were made by editors who should have known better (so I didn’t review their edits when I returned to editing), but apparently didn’t, and I will probably need to spend the day to review, correct and check all those edits and repair the citations. I will be stepping back through some edits made in 2017 to 2018 to see what happened there, and will post here when I get that sorted. SandyGeorgia (Talk) 15:58, 23 November 2021 (UTC)

I found numerous issues introduced by bots and well-meaning editors (who should have known better), so took the better part of today to review all edits back to 2015 (I was on an extended break between 2015 and 2018). I have removed the alleged NIMH "consensus" guidelines (which a 2018 editor had linked to a press release), and added the actual paper (Thienemann), along with a review of it (Sigra). I think that I've now gotten out all of the errors, so that work can advance from here. SandyGeorgia (Talk) 21:55, 23 November 2021 (UTC)

Controversial diagnosis

The last I know is it is not recognized in DSM-5, and is still highly controversial:

• PMID 28498087
• PMID 31111754

Will the IPs who want to introduce something different please provide sources? SandyGeorgia (Talk) 23:32, 11 November 2021 (UTC) And this 2020 review mentions PANDAS still as "proposed":

• PMID 32206586 SandyGeorgia (Talk) 17:43, 13 November 2021 (UTC)
• PMID 30996598 (not a review, but 2018 still says unproven. SandyGeorgia (Talk) 19:48, 23 November 2021 (UTC)

As discussed in this Wikipedia article, PANDAS is essentially an unproven hypothesis. Regardless, it appears that PANDAS is heavily overdiagnosed. A test purporting to diagnose PANDAS has been discredited. (" we found a so-called positive value on the Cunningham Panel in 86% of the healthy controls, as compared to 92% in the patients assessed for PANS and PANDAS.") Additionally, the original definition was limited to children who had strep and had sudden onset of psychiatric symptoms, but it appears that PANDAS labels are being given to those who don't fit this criteria. It might be worth incorporating information from a recent deep dive on PANDAS at Spectrum News. Also a more recent systematic review of treatments might be useful but the conclusions are similar to what's already in the Wikipedia article. ScienceFlyer (talk) 19:07, 13 November 2021 (UTC)

Thanks; just checking that the recent IP edits were, in fact, bogus ... but don't have time just not to expand per your findings, perhaps you do ? Regards, SandyGeorgia (Talk) 19:09, 13 November 2021 (UTC)

ScienceFlyer the Spectrum News piece can not be used to cite medical content (per WP:MEDRS), but perhaps some parts can be incorporated into History of Society and culture. For example, that Swedo is no longer at NIH, rather at PANDAS Physician Network is worth noting. I have now worked some of this in to History, and Society and culture. SandyGeorgia (Talk) 06:36, 24 November 2021 (UTC)

ICD-11

I cannot find a MEDRS-compliant source, but this page (not likely reliable), explains 8E4A.0 as:

Although ICD-11 more aptly denotes that PANDAS is an autoimmune CNS disorder (8E4A.0 Paraneoplastic or autoimmune disorders of the central nervous system, brain, or spinalcord), a specific code remains absent.

I don't believe that source is usable, and absent a source, I'm not sure what to do, so for now, the article is silent on ICD. The general info on DSM ("not accepted as a distinct disorder") seems adequate, as the same seems to be true for ICD. SandyGeorgia (Talk) 23:01, 23 November 2021 (UTC)

This Consenus Statement from the British Paediatric Neurology Association says similar: ICD-11 mentions PANDAS, but no operational clinical diagnostic criteria are defined, and DSM-5 does not classify or mention PANS or PANDAS. (Although Swedo served on DSM-5 committee.) SandyGeorgia (Talk) 16:21, 24 November 2021 (UTC)

Recent revert

Regarding this revert, commentary moved here from User talk:SandyGeorgia

This is regarding the reverting of my edits to the PANDAS entry.

reference [11]

The current text states "As of 2021, the autoimmune hypothesis of PANDAS is not supported by evidence.[1][7][22][23]" I am aware of Wikipedia’s guideline for sourcing health content, that review articles published in reliable and respected journals are prefered in order to maintain a neutral point of view and a balanced handling of information that is accurate and current.

Suggesting that there is no support for the claim of autoimmunity without discussing the various mouse model experiments is certainly not maintaining a neutral point of view.

The primary source I sighted from a respected and peer reviewed journal although it is dated, it is by no means out of date.

Furthermore it does not represent the view of one set of authors, but rather exits as part of a series of experiments and publication in various peer reviewed journals spanning the time frame from 2004 through mid 2020:

• A Murine Model for Neuropsychiatric Disorders Associated with Group A beta-Hemolytic Streptococcal Infection (02/18/2004)
• Passive transfer of streptococcus-induced antibodies reproduces behavioral disturbances in a mouse model of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (08/11/2009)
• Robust Antigen Specific Th17 T Cell Response to Group A Streptococcus Is Dependent on IL-6 and Intranasal Route of Infection (09/22/2011)
• Group A Streptococcus intranasal infection promotes CNS infiltration by streptococcal-specific Th17 cells (12/14/2015)
• Hello from the Other Side: How Autoantibodies Circumvent the Blood–Brain Barrier in Autoimmune Encephalitis (04/21/2017)
• Differential binding of antibodies in PANDAS patients to cholinergic interneurons in the striatum (03/2018)
• Th17 lymphocytes drive vascular and neuronal deficits in a mouse model of postinfectious autoimmune encephalitis (06/16/2020)

Included in this list is “Hello from the Other Side: How Autoantibodies Circumvent the Blood–Brain Barrier in Autoimmune Encephalitis” which is a review article of proposed triggers for various autoimmune encephalopathies and their animal models, as well as basic structural features of the BBB and how they differ among various CNS regions, a feature that likely underlies some regional aspects of autoimmune encephalitis pathogenesis. Discussion of the routes that antibodies and immune cells employ to enter the CNS and their implications for AE. Analysis of future therapeutic strategies that may either preserve or restore barrier function and thereby limit immune cell and autoantibody infiltration into the CNS.

“Passive transfer of streptococcus-induced antibodies reproduces behavioral disturbances in a mouse model of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection” is referenced in 147 peer reviewed articles including 122 review articles. This cumulative conclusions of these sources are by no means controversial and certainly has been repeated by different experimenters at various academic institutions.

Furthermore, the reference to the statement that there is no support for autoimmunity in PANDAS is from the British Pediatric Neurology Association (BPNA) published position. This is not peer review, and is based on an overly narrow selection of cherry picked resources, as has been pointed out by PANDAS UK https://www.panspandasuk.org/post/pans-pandas-uk-s-response-to-the-bpna-consensus-statement-on-pans-and-pandas and the PANDAS Physician Network. https://www.pandasppn.org/bpna/

At the very least, in spirit of balanced coverage, these viewpoints should be brought forward if the BPNA claim is to remain. Additionally, one must also discuss the mouse model of PANDAS and the support it provides for autoimmunity.

Furthermore is the recent retrospective study of the Cunningham panel that shows patient pre- and post-treatment symptoms correlated with changes in anti-neuronal autoantibody titers and the neuronal cell stimulation assay in the Cunningham Panel in patients with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection (PANDAS), and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS).

Sources
References

— Preceding unsigned comment added by PandasParent (talk • contribs) 01:53, January 18, 2022 (UTC)

This entire post needs to be moved to Talk:PANDAS, and I’m too tired to do it tonight. Long story short; multiple recent WP:MEDRS-compliant sources can not be refuted by old primary mouse studies. SandyGeorgia (Talk) 02:03, 18 January 2022 (UTC)

Treatment updates

An audit done by Dr Tim Ubhi from The Children's e-Hospital in 2018/19 showed that 90% of family general practitioners were unfamiliar with this condition despite active campaigning by parent groups across the United Kingdom. Treatment guidelines were published for the first time in the United Kingdom in 2018 and had contributions from major children's centres including Alder Hey Children's hospital, Birmingham Children's Hospital, The Evelina Chidlren's Hospital and The Children's e-Hospital. — Preceding unsigned comment added by The Children's e-Hospital (talk • contribs) 15:10, 24 April 2020 (UTC)

References

I don't find any journal-published literature reflecting new UK guidelines, but I do find these MEDRS-compliant reviews that could be used:

• Thienemann M, Murphy T, Leckman J, et al. (September 2017). "Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part I-Psychiatric and Behavioral Interventions". J Child Adolesc Psychopharmacol. 27 (7): 566–573. doi:10.1089/cap.2016.0145. PMC 5610394. PMID 28722481.
• Farhood Z, Ong AA, Discolo CM (October 2016). "PANDAS: A systematic review of treatment options". Int. J. Pediatr. Otorhinolaryngol. 89: 149–53. doi:10.1016/j.ijporl.2016.08.008. PMID 27619047.

SandyGeorgia (Talk) 20:40, 24 April 2020 (UTC)

Note PMID 29309797 is 2018 treatment review SandyGeorgia (Talk) 17:23, 23 November 2021 (UTC)

This BMJ page references UK treatment guidelines that I am still unable to locate. SandyGeorgia (Talk) 17:26, 23 November 2021 (UTC)

Colin would you have any leads on the post just above this one (trying to determine if these UK treatment guidelines exist). SandyGeorgia (Talk) 17:34, 23 November 2021 (UTC)

The guidelines appear to be this document. I can't find any NICE guidelines on the matter. I thought www.e-hospital.co.uk looked a bit dodgy since it initially appears to be an online children's hospital that I'd never heard of. Then it become clear this is PANDAS specific. I saw the badge rating it "outstanding" by the Care Quality Commission. This does appear to be a valid claim. I can't get hold of the BMJ article but many of the authors are the same as those of the guidelines, who are presumably members of the "The UK PANDAS and PANS Physicians Network". On googling for that, I discovered this statement by PANS PANDAS UK that appears to be a response to The British Paediatric Neurology Association: Consensus statement on childhood neuropsychiatric presentations, with a focus on PANDAS /PANS (PDF). I also found PMID 33848371 aka "Clinical guidance for diagnosis and management of suspected Pediatric Acute-onset Neuropsychiatric Syndrome in the Nordic countries" (full text here). -- Colin°^Talk 10:31, 24 November 2021 (UTC)

Thanks, Colin! Very nice—I was unable to find any of that.

So, it appears that the situation in the UK and Nordic countries mirrors what is going on in the US and Canada, as summarized now by the recent sources in the article. We have multiple recent reliable secondary reviews advising against treatments that are recommended by networks of physicians, who as the Gilbert review points out (and is covered in the Spectrum News non-MEDRS deep dive) may be engaged in advocacy and attempts to influence governmental policy. I took a deeper dive into all of that yesterday, and it looks as if the approach may be to get networks of internet-armed parents to influence legislators. I wonder what the relationship is between the UK Physicians Network and the (US) PANDAS Physicians Network? Your sources mention they quote certain groups extensively.

And, for three and a half years, this article contained text cited to a press release (from a journal, weird, and the NIMH, from whence this hypothesis originated), advancing same. The article is still a mess, because it alternates between getting no attention and getting hit by advocacy edits, and it appears that advocacy is again on an upswing. SandyGeorgia (Talk) 16:42, 24 November 2021 (UTC)

This misleading and poorly sourced statement (sourced to a press release) stood for more than three years. Now sorted, see here. SandyGeorgia (Talk) 01:46, 24 November 2021 (UTC)

Considering what the treatment reviews have to say about immunomodulatory therapies and prophylactic antibiotics, this taxpayer-funded bio is an interesting read. SandyGeorgia (Talk) 02:23, 24 November 2021 (UTC)

The move in the UK has been to reduce the need for antibiotics whist accepting that most children with PANDAS respond well to a short course of antibiotics. The guidlelines are linked hereNeoSocrates (talk) 10:09, 24 June 2022 (UTC)

That is a webpage from a group of patient advocacy organizations ... not WP:MEDRS. SandyGeorgia (Talk) 10:52, 24 June 2022 (UTC)

The streptococcal basis for neuropsychiatric disease

The discussions so far have been focused on the concept of PANDAS as "new" or "controversial" diagnosis but I would argue that we have simply re-labelled the neuro-psychiatric features that we saw in post-streptoccal conditions such as rheumatic fever and Sydenham's chorea. There is a huge amount of resistance from the world of Tourette's and autism (understandably) but if you stand back and look at the history of post-streptococcal neuro-psychiatric diseases, the case for PANDAS is a reasonable one. Perhaps we should call it post-streptococcal basal ganglia encephalitis? When I get a moment I will update the page but I think you should also consider the work of Xu et al (Pettinger's group) who have identified the molecular targets in PANDAS - The cholinergic inter-neurones. NeoSocrates (talk) 09:59, 24 June 2022 (UTC)

Please become familiar with Wikipedia's guidelines for medical content before editing the page; your personal hypotheses are unsupported by reliable medical sources. PMID 32539528 is a primary study (associated with Swedo); as with most of the work coming from that group, secondary reviews present a broader understanding of those primary studies, with most past conclusions unsupported and controversial. You can find secondary sources via the link at the top of this page; Wikipedia does not lead, rather follows, secondary sources and cannot use primary studies in a case like this. SandyGeorgia (Talk) 11:06, 24 June 2022 (UTC)

Wikipedia:Wiki Ed/University of Wisconsin-Eau Claire/ENGL 312 (Summer 2022)

Ian (Wiki Ed), this is a controversial and contentious topic, in which a solid foundation in medical editing and WP:MEDRS is essential. I would encourage Bspoerl to seek another topic where their edits are more likely to stick. It would be a difficult topic for a graduate medical student. SandyGeorgia (Talk) 03:56, 6 July 2022 (UTC)

Okay, that is what I was thinking. Thank you! Bspoerl (talk) 13:40, 6 July 2022 (UTC)

Other Pysical and Psychiatric Symptoms

In this article the following symptoms have been mentioned; tics, obsessive–compulsive or tic disorder, emotional lability, enuresis, anxiety, and deterioration in handwriting.

Other common symptoms include psychosis like symptoms (eg. delusions, hallucinations, and drastic personality changes,) eating disorder symptoms, sensory sensitivity, and reverting to childlike behaviours.

Asexual amanita (talk) 19:22, 9 January 2023 (UTC)

sources

Please do not blank other editors' text:[12] restoring ...

I have expanded the list from Wilbur, 2019. Sources compliant with Wikipedia's medical sourcing guidelines are needed for adding anything beyond that. I do not find recent MEDRS sources which mention delusions, hallucinations, dyslexia and dyscalculia specifically (see WP:UNDUE). SandyGeorgia (Talk) 14:11, 10 January 2023 (UTC)

The sources you added *after* blanking my response either are not MEDRS sources or do not contain the text mentioned. Again, to mention the specific symptoms above they should be included in a recent secondary review. THe PANDAS network is not a MEDRS source, and the NIH has an involved position in the PANDAS debate. SandyGeorgia (Talk) 18:50, 10 January 2023 (UTC)

I'm so sorry for blanking, I sincerely appologize for that. This may seem like a poor excuse, but I honestly hadn't realized that I had done that. I will be more careful in the future. 142.158.120.124 (talk) 18:55, 10 January 2023 (UTC)

The NIH page doesn't cite it's sources and does not include indications of levels of evidence, so I'd urge caution. PANDAS Network and WebMD are both not sufficiently reliable on this topic. WebMD uses unreliable PANDAS Network and PANDAS Physicians Network as sources. ScienceFlyer (talk) 18:52, 10 January 2023 (UTC)

Also, it is unhelpful on talk pages to change the content of a post that has already been responded to. You may find WP:TALK helpful. SandyGeorgia (Talk) 18:54, 10 January 2023 (UTC)

References

Scientific Update Needed for Wikipedia Article

The information that PANDAS is a "hypothetical" diagnosis is out of date and misleading. Newer research studies have been published that ended any controversy on whether this syndrome exists. According to the PANDAS Network website, the latest articles include the following:

Distinct Th17 effector cytokines differentially promote microglial and blood-brain barrier inflammatory responses during post-infectious encephalitis (2023)

Neuroinflammation in Obsessive-Compulsive Disorder: Sydenham Chorea, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, and Pediatric Acute Onset Neuropsychiatric Syndrome

Identification of ultra‑rare genetic variants in pediatric acute onset neuropsychiatric syndrome (PANS) by exome and whole genome sequencing (2022)

Therapeutic plasma exchange in adolescent and adult patients with autoimmune neuropsychiatric disorders associated with streptococcal infections

Artificial Neural Networks Analysis of polysomnographic and clinical features in PANS: from sleep alteration to “Brain Fog” (2021)

PANS and intravenous immunoglobulin (IVIG): comprehensive open-label trial in ten children (2022) Evaluation of Intravenous Immunoglobulin in PANS (2021)

Children With PANS May Manifest POTS (2022)

Association of Pediatric Acute-Onset Neuropsychiatric Syndrome With Microstructural Differences in Brain Regions Detected via Diffusion-Weighted Magnetic Resonance Imaging (2020) 50.110.4.163 (talk) 19:23, 27 April 2023 (UTC)

Please review Wikipedia's sourcing guideline for biomedical content.

1. Primary study (and not Pubmed-indexed, because dubious source)
2. Vreeland A, Thienemann M, Cunningham M, Muscal E, Pittenger C, Frankovich J (March 2023). "Neuroinflammation in Obsessive-Compulsive Disorder: Sydenham Chorea, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, and Pediatric Acute Onset Neuropsychiatric Syndrome". Psychiatr Clin North Am. 46 (1): 69–88. doi:10.1016/j.psc.2022.11.004. PMID 36740356.
3. PMID 35773312, a primary study.

   "While there is a general recognition of the condition, a great deal of controversy remains concerning the validity of the PANS grouping with regards to common pathogenetic mechanisms and optimal treatment."

4. PMID 36251457, another primary study.
5. PMID 34326674, another primary study.
6. PMID 35933358, another primary study.
7. PMID 35557616, another primary study.
8. PMID 32364596, another primary study.

So, there might be one usable source from your post. Wikipedia does not lead or write research; it summarizes secondary reviews. ALL recent and high-quality and usable secondary reviews are quite clear on the status of PANDAS.

The PANDAS network is an advocacy organization. (If you get your medical information from advocacy organizations or misinterpretation of primary studies that have not been subjected to independent secondary review, you are unfortunately likely to be misguided.) Several of these primary studies come from the PANDAS advocacy group, several represent very small samples, and at least one does indicate the very controversy the original poster denies.

So what is the content from Vreeland et al you would like to see added (recognizing the authors are almost all affiliated with said advocacy organization)? Re neuroinflammation, I don't see it as adding anything we have't already stated in the Mechanism section. Re Treatment, the Guidelines section of this article already covers the differences between statements coming out of the Stanford group and other bodies. SandyGeorgia (Talk) 16:05, 28 April 2023 (UTC)

Draft PANS article

I noticed a new AFC draft article on PANS by @Celeblasatha. I'm wondering if such an article is necessary and left a comment on the talk page. ScienceFlyer (talk) 17:35, 6 June 2023 (UTC)

Semi-protected edit request on 24 December 2023

Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) is a clinical diagnosis given to children who experience a rapid, acute onset neuropsychiatric symptoms, including symptoms of obsessions/compulsions and tics </ref></ref> </ref>. While it may appear based on the symptomology that the individual has obsessive-compulsive disorder (OCD) or tic disorders, the sudden onset of symptoms separates PANDAS from those other disorders.</ref> While the scientific causes of PANDAS is not completely understood yet, symptoms are proposed to be caused by group A streptococcal (GAS), and more specifically, group A beta-hemolytic streptococcal (GABHS) infections.[3] OCD and tic disorders are hypothesized to arise in a subset of children as a result of a post-streptococcal autoimmune process.[4][5][6] The proposed link between infection and these disorders is that an autoimmune reaction to infection produces antibodies that interfere with basal ganglia function, causing symptom exacerbations, and this autoimmune response results in a broad range of neuropsychiatric symptoms.[3] Meadows95 (talk) 18:07, 24 December 2023 (UTC)

 Not done: it's not clear what changes you want to be made. Please mention the specific changes in a "change X to Y" format and provide a reliable source if appropriate. Deltaspace⁴² (talk • contribs) 21:51, 24 December 2023 (UTC)

On PANDAS

Moved from User talk:SandyGeorgia

 – SandyGeorgia (Talk) 16:37, 11 February 2023 (UTC)

@ScienceFlyer and Bon courage: this was on my user talk page. I have visitors for a week, and will read when I have time. SandyGeorgia (Talk) 16:37, 11 February 2023 (UTC)

ls,

I am writing this rather lengthy message as i do not feel the urge to try and change a wikipedia page by doing my own edits, but rather by asking you as the the main author to rethink your view about about a wikipedia lemma, called PANS/PANDAS.

On reading the English PANDAS/PANS wiki, it seemed to me that the general tone about the diagnosis is somewhat summarized as "the condition as clearly a pseudoscientific, non-existent illness". Reading through the version history, you seem to be the main author of the article, guarding it from misinformation and edits by other wikipedians. But as stated, i think that your opinion on the current status/degree of knowledge of the illness is outdated.

Other than trying to change the wikipedia article, i decided it might be better to point you as the main author to some findings in recent literature, and in the literature used (i guess by you) in the drafting of the PANS/PANDAS article.

While it is true that much about this condition is not well known and not well understood, the debate whether PANS/PANDAS is a real condition has been closed recently, when investigators found clear immunological evidence in human/mice ex vivo studies, implicating a immunological role of PANDAS symptoms. Please read Xu et al., 2021. Antibodies From Children With PANDAS Bind Specifically to Striatal Cholinergic Interneurons and Alter Their Activity; American Journal of Psychiatry 2021 Vol. 178 Issue 1 Pages 48-64. DOI: 10.1176/appi.ajp.2020.19070698

In my world, if antibodies from PANDAS patients have been found to specifically bind to hypothesized neurons, as compared to controls, neurons of which a deficiency is known to play a role in OCD disorders, and that these neurons show altered activity, the debate whether this is a real condition or not is closed in favor of: it's real.

So, to summarize, i think the scientific debate about PANDAS is currently not about "is PANDAS a real condition", but: how to distinguish between PANDAS / not PANDAS in OCD, Tics/Tourette syndromes, and : how to effectively treat PANDAS.

I do agree that not all OCD/Tourettes/Autism/etc disorders can all be attibuted to auto-immune disease (at least, there is no evidence to assume that this is the case), and i think the major controversies lie here, in parents rather wanting their child to suffer from PANDAS (a severe, but treatable condition) over classical Tourettes/OCD (a condition for life). This is a matter that needs addressed, but it should not lead to an abolisment of the disease as being 'non-existent', and pseudoscientific.

It is also true that there still is much research to be done on the treatment of PANS/PANDAS, but i feel this is at the time mostly due to a lack of large, double blind randomized controlled trial studies than due to a lack of evidence.

Finally, and maybe a bit speculative. May i point to Wilbur et al., 2018: competing interest statement:

Potential Conflicts of Interest

EAY has served on a scientific advisory board for Juno Therapeutics and has provided a one-time consultation to Novartis. Teva provided unrestricted funds to the Hospital for Sick Children Foundation for a symposium she organized. RML serves as a consultant Sobi, Novartis, Eli Lilly, and Sanofi. SK, CW, DL, MS, AB, and WJL have no relevant disclosures to report. All authors have submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. Conflicts that the editors consider relevant to the content of the manuscript have been disclosed. so, to conlcude, Several authors report funding and links to Novartis, manufacturer of ritalin (i.e. methylphenidate).

The authors report that this drug has been shown to be effective in treating pandas over other modes of therapy: page 3, second column' Approximately half of the responders reported SSRIs (44%) and medications for ADHD (e.g., methylphenidate) (43%) to be effective or somewhat effective (29)'. However, the paper they refer to, compared this with other types of therapy and the authors formulate a different conclusion:

Calaprice D, Tona J, Murphy TK. Treatment of Pediatric Acute-Onset Neuropsychiatric Disorder in a Large Survey Population. J Child Adolesc Psychopharmacol. 2018 Mar;28(2):92-103. doi: 10.1089/cap.2017.0101. Epub 2017 Aug 23. PMID: 28832181; PMCID: PMC5826468.

'Psychotropic medications, most commonly SSRIs (38% reported a trial), were commonly employed, but were often ineffective (e.g., 44% found SSRIs "somewhat" to "very effective").

for other forms of therapy, the same authors conclude: 'Response to antibiotic treatment was best when treatment was relatively aggressive, with broad-spectrum antibiotics and courses of >30 days generally producing the best results (i.e., up to 52% of patients achieving a "very effective" response). For immune-deficient patients (caregiver-reported laboratory studies below normal limits; N = 108), use of broad-spectrum antibiotics appeared to be particularly desirable. Anti-inflammatory therapies, including over-the-counter medications such as ibuprofen, were at least "somewhat effective" for most patients. Intravenous immunoglobulin (IVIG) had been used to treat PANS in 193 (28%) of the patients and was at least "somewhat effective" for 89%, although for 18% of these, the effect was not sustained. The highest rate of sustained response to IVIG treatment was seen in immune-deficient patients who received doses of at least 0.8 g/kg IVIG on a regular basis.'

However; wilbur et al (2018) somehow decided not to include these findings in their review in the respective paragraphs.

Wilbur et al., then conclude in their' what's new' highlight with: 'Youth satisfying criteria for PANDAS/PANS should receive treatment with psychotropic medications and can be expected to show improvement rates similar to youth with OCD not satisfying PANDAS/PANS criteria.'

Conclusions

1. Recent studies support the hypothesis of PANS/PANDAS as an auto-immune disorder: antibodies either bind or do not bind to neurons. To me, this is science at its best, well-setup experiments, controlled and verifiable. Next steps are to proceed into living patients, rather than lab-cultures, to develop better ways of diagnosis, and to start large RCTs to investigate best ways to treat.

2. To me, the article about the controversies on PANS/PANDAS treatment itself is rather controversial. This is important, as it is the first citation in the wikipedia article used to support the statement that PANS/PANDAS itself is a controversial diagnosis. Again, this whole second part of my writing is rather speculative, but i do feel that this 'review' article has some major flaws and it should at least be considered to find a better article to support the claim that is made in the first line of the article.

3. I would ask you to consider the suggestion to decide to change the article's tone over these lines: " PANS/PANDAS like conditions are real, but poorly understood and best ways to treat are poorly known", as in my opinion, this is more in agreement with current scientific literature.

Sincerely, Sirdragos Sirdragos (talk) 15:08, 11 February 2023 (UTC)

PMID 32539528 is a primary mouse study; see Wikipedia's guideline for sourcing medical content. Also see Wikipedia's policy on original research. SandyGeorgia (Talk) 16:43, 11 February 2023 (UTC)

PMID 32539528 in not a primary mouse study, it is a combined human ex vivo / mouse ex vivo study. 2A02:A46F:3519:1:1E86:311C:C24A:297A (talk) 10:56, 18 February 2023 (UTC)

It's a primary study. It uses mouse brain tissue. Sample sizes are small. It doesn't meet WP:MEDRS. To round it out, the authors include proponents of the hypothesis. SandyGeorgia (Talk) 11:31, 18 February 2023 (UTC)

PMID: 35013105 is a more recent review article that complies to the original research policy.

PMID: 31367805 reviews autoimmune OCD in a broader context, including streptococcal infections and PANS/PANDAS.

Both conclude that there is sufficient evidence for autoimmune disease as a causal factor in a subset of OCD Sirdragos (talk) 11:32, 18 February 2023 (UTC)

Proposing a new diagnostic scheme for OCD, to include sub-categories, might warrant one sentence at Obsessive–compulsive disorder#Research. I don't see anything in those articles that changes anything in this article. SandyGeorgia (Talk) 11:41, 18 February 2023 (UTC)

Took me a long time to decide on a reply, but today, I made a decision:

Endres et al state:(PMID: 35013105)

Perspectives: the concept of autoimmune OCD

The clinical experience with patients with PANDAS/PANS and other autoimmune disorders points to the existence of secondary autoimmune forms of OCD, at least in some patients with atypical clinical manifestations. Several studies on different immunological markers support this hypothesis. Especially in the presence of the “red flag” symptoms mentioned in Box 2, an autoimmune etiology should be considered, and extended diagnostic investigations seem to be warranted. It is not yet clear whether a classical primary presentation of OCD excludes secondary causes, which should be investigated in the future.

Pathophysiologically, the following subtypes should currently be distinguished:

1. OCD with PANDAS/PANS,

2. OCD with neuronal antibodies: a. against well-characterized cell surface antigens (such as NMDA-R), b. against well-characterized paraneoplastic, intracellular antigens (such as Ma2), and c. against non-well-characterized and novel neuronal autoantibodies,

3. OCD in the context of systemic autoimmune diseases with potential brain involvement (such as systematic lupus erythematosus),

4. OCD in the context of established autoimmune CNS disorders (such as multiple sclerosis).

The conclusion of Endres et al (PMID: 35013105)

"There is increasing evidence for secondary immune-mediated forms of OCD. The DSM-5 and novel ICD-11 criteria include the category of secondary OCD, without, however, providing guidelines according to which such a diagnosis should be established. In the current paper, the authors have drafted a first proposal of clinical criteria for the definition of secondary autoimmune OCD. Future studies should investigate the prevalence (e.g., by analyzing the rate of neuronal antibodies in patients with OCD), diagnostic regimes (combination and comparison of different diagnostic methods), and optimal therapy of autoimmune OCD, including the development of clear treatment algorithms and clinical guidelines. Recognizing the autoimmune causes of OCD could inform additional therapeutic options for the affected patients to promote treatment response and reduce chronicity."

please explain to me why you do not think it is necessary to include this article. This review does not dispute the pandas hypothesis at all as problematic/controversial/pseudoscientific. True, it correctly states that there is still a lot to learn about the mechanisms and treatment, but thas is something different than disputing the existence of the condition, which the authors obviously do not, as they clearly include PANS/PANDAS as a subtype of immune-mediated OCD. Not including this review article is IMO a violation of wikipedias neutral point of view content policy.

https://en.wikipedia.org/wiki/Wikipedia:Neutral_point_of_view Sirdragos (talk) 21:58, 3 February 2024 (UTC)