Talk:Mast cell activation syndrome

MCAS and Lyme disease

Removing Lyme disease from "It is also found in subset groups of patients with common variable immunodeficiency (CVID)[6] and Lyme disease.[7]" because the provided reference does not support that statement. The reference is not based on a human study and was published long before MCAS was established. It would probably be a good idea if this whole article was fact-checked. ScienceFlyer (talk) 04:56, 13 August 2018 (UTC)

Using reliable sources

This entry includes references to unreliable sources, including those by Lawrence Afrin (a practitioner of "integrative medicine" pseudoscience), and a non-expert advocacy group called "Mast Cell Action". Reliable sources such as a recent consensus document should be used instead. The consensus document warns against sources like Afrin. ScienceFlyer (talk) 04:31, 27 April 2020 (UTC)

More reliable info about MCAS ScienceFlyer (talk) 20:51, 16 December 2021 (UTC)

Wikipedia does not consider integrative medicine to be pseudoscience. See integrative medicine. There are lots of things done in the name of integrative medicine that are pseudoscience; there are lots of things done in the name of mainstream medicine that are pseudoscience. In short, we cannot use the fact that something is classified as integrative medicine to conclude that it is pseudoscience. Jaredroach (talk) 14:17, 10 February 2023 (UTC)

Treatments Section

There are a few mentions of "natural" treatment. That seems a little vague to me and also unhelpful. Also, I believe Ketotifen may be a mast cell stabilizer in addition to an antihistamine, so this section may need more research in general.

While The Mastocytosis Society does a good job of summarizing the most common treatments, it would probably be better to look directly at the sources they cite, which are less likely to change. 138.88.143.153 (talk) 05:39, 21 March 2022 (UTC)

Review articles removed

ScienceFlyer, can you please give a policy-based explanation for your repeated removal 1 2 of references to peer-reviewed review articles? In your edit summaries it appears that the only grounds is your personal opinion of these sources. If that’s correct, I will restore them. Innisfree987 (talk) 02:28, 30 January 2023 (UTC)

@Innisfree987 Thank you for your question. On this talk page, I have previously posted reliable sources, to distinguish from unreliable sources such as Lawrence Afrin and other purveyors of "integrative medicine."

No reason to put integrative medicine in quotes. If there is some evidence that work by Afrin is unreliable, that body of evidence does not include the fact that it can be labeled as integrative medicine. Jaredroach (talk) 14:20, 10 February 2023 (UTC)

The Nature Reviews Microbiology article by Davis et al cites Lawrence Afrin and colleagues, so it is not reliable (for its MCAS statements) for the same reasons Afrin is not reliable. Additionally, the Davis article has no experts in immunology as authors, so its few references to MCAS should not be considered authoritative nor sufficient for WP:MEDRS. Also, many illnesses (including post-infectious syndromes) share non-specific symptoms, so why specifically cite post-COVID symptoms?

It is a pretty big step to claim that any article in a Nature Reviews journal is not reliable. Citation of a specific author is very weak evidence that an article is not reliable. Jaredroach (talk) 15:12, 10 February 2023 (UTC)

The MCAS Wikipedia article should have no references to Afrin, except perhaps to clarify that Afrin et al have been cited by the AAAAI as unduly broadening the criteria for diagnosing MCAS. Here's part of what the consensus document says:

Some publications and lay press information have greatly broadened the clinical criteria for MCAS. Nonvalidated laboratory tests have been used to correlate unrelated symptoms with nonvalidated laboratory findings to make a diagnosis of MCAS. This has caused confusion for patients and physicians alike. The misconceptions about diagnosing MCAS have affected many patients and impaired their quality of life. More concerning, however, is using the diagnosis of MCAS erroneously and missing a truly treatable underlying condition not related to MCs.

It's worth reading the whole consensus document, as well as this review. ScienceFlyer (talk) 03:47, 30 January 2023 (UTC)

@ScienceFlyer, just to be clear, your argument as I understand it is that your personal view is that Afrin is unreliable; however, these two different peer-reviewed publications (among many others) do regard him as reliable. I do not see a policy-based reason he cannot be cited; these review articles are suitable sources according to WP:MEDRS, which advises, "Ideal sources for biomedical information include: review articles (especially systematic reviews) published in reputable medical journals". Can you please specify what part of MEDRS indicates otherwise? Innisfree987 (talk) 03:58, 30 January 2023 (UTC)

@Innisfree987 It's not my "personal view". The consensus of experts is that Afrin is not reliable. They are referring to his publications in the above quote. And "integrative medicine" is well-known as a marketing term for pseudoscience. Afrin runs an "integrative medicine" business. Just because someone's writings are listed in Pubmed does not make them reliable. ScienceFlyer (talk) 04:24, 30 January 2023 (UTC)

@ScienceFlyer, ok, that’s not responsive as far as policy is concerned and specifically why these peer-reviewed texts would be unacceptable. It seems clear to me there are multiple different views in the field that we can reference to reliable secondary sources, which my edits reflected. Innisfree987 (talk) 04:29, 30 January 2023 (UTC)

I don't see any substantive responses to my points about why Afrin is unreliable. Afrin's views are not accepted by the consensus of experts. Therefore citations to Afrin (along with his colleagues Tania Dempsey, Leonard Weinstock, and others) constitutes unwarranted promotion of fringe theories. ScienceFlyer (talk) 04:42, 30 January 2023 (UTC)

Per the link you just gave: “The neutral point of view policy requires that all majority and significant-minority positions be included in an article.” Multiple reliable sources have published Afrin et al. That there is conflict in the field is not a reason to exclude reliable sources. Innisfree987 (talk) 05:02, 30 January 2023 (UTC)

Davis et al cites Lawrence Afrin and colleagues is not true. Do you mean that because Afrin is not cited, Afrin is not reliable? I agree with Innisfree987, Afrin appears to be at least a signficant-minority position and therefore should be mentioned. One way to handle this is to cite Afrin, but follow it by citing another reliable secondary source that has specifically criticized Afrin's conclusions. Gülen who is already cited is critical to Afrin. So why not add Afrin main conclusions and why they have been criticized by Gülen. That way both the majority and signficant minority positions are stated without giving undue weight to the later. Boghog (talk) 07:43, 30 January 2023 (UTC)

I went through the article and made some edits from my neutral point of view. I am happy to take another pass at it if there is more feedback. Jaredroach (talk) 15:23, 10 February 2023 (UTC)

I don't think neutrality has quite yet been achieved, and I don't think ScienceFlyer's points have been adequately addressed. Minority viewpoints can be represented, but they are treated equally here. SandyGeorgia (Talk) 16:40, 10 February 2023 (UTC)

On the one hand, we have multiple review articles in reputable journals citing Afrin.

On the other hand, we have a Wikipedia editor saying that they personally believe Afrin is a crackpot.

As @Jaredroach has been putting it so gently, disagreeing with an author isn't a policy-based reason for rejecting a source that cites this author. If it were actually true that The consensus of experts is that Afrin is not reliable, then those experts would not be citing Afrin positively in their own work, and reputable journals would not be publishing papers that cite Afrin positively. I therefore am left with substantial doubts about whether The consensus of experts is that Afrin is not reliable, or whether it might be truer to say something like "Within the confines of my personal filter bubble, Afrin is not reliable". WhatamIdoing (talk) 21:26, 21 February 2023 (UTC)

Diagnostic controversy

• Mihele DM, Nistor PA, Bruma G, Mitran CI, Mitran MI, Condrat CE, Tovaru M, Tampa M, Georgescu SR (July 2023). "Mast Cell Activation Syndrome Update-A Dermatological Perspective". J Pers Med. 13 (7). doi:10.3390/jpm13071116. PMC 10381535. PMID 37511729.{{cite journal}}: CS1 maint: unflagged free DOI (link)
• Afrin LB, Ackerley MB, Bluestein LS, Brewer JH, Brook JB, Buchanan AD, et al. (May 2021). "Diagnosis of mast cell activation syndrome: a global "consensus-2"". Diagnosis (Berl). 8 (2): 137–152. doi:10.1515/dx-2020-0005. PMID 32324159.

Another year, still no indication this diagnostic controversy is settling into anything useful. SandyGeorgia (Talk) 23:17, 17 November 2023 (UTC)

New AAAAI/ACAAI practice parameter for anaphylaxis discusses diagnosis and ruling out of MCAS. And happy new year @SandyGeorgia ScienceFlyer (talk) 23:08, 23 December 2023 (UTC)

While this is interesting and tangentially related, it doesn’t seem to really address @SandyGeorgia’s comment that there is still no universal consensus on diagnostic criteria. At best it’s just the AAAAI applying a mix of their own criteria (and treating it as the official consensus) and the latest criteria mentioned in the paper Sandy linked above anyway.

I agree with other commenters above that you seem to have a strong bias on this issue. I’m not sure what your personal stake in this is…I understand you personally consider that one source more valid than others, but this is a personal opinion, not a scientific consensus. Especially considering the AAAAI at one point insisted on SUCH a narrow set of criteria (by making recurrent anaphylaxis a requirement) that it would’ve essentially changed the definition of the condition so much that it excluded possibly the majority of patients diagnosed (especially those with secondary MCAS, such as the bulk of the EDS population). Per the paper Sandy linked above:

“Less than three weeks after the publication on-line of the AAAAI paper, The Mastocytosis Society (TMS, the dominant patient support group in the MC disease space in the U.S.) sent a letter to its medical advisory board expressing concern about this new criterion [1]https://www.degruyter.com/document/doi/10.1515/dx-2020-0005/downloadAsset/suppl/dx-2020-0005_suppl.doc

I see they have apparently sort of walked that one back due to widespread criticism. But the fact that they proposed criteria that received such massive criticism from multiple patient and expert groups seems to confirm they are not necessarily reporting a true universal, consensus. It’s disingenuous (and ignoring a massive subset of the MCAS community, not just Afrin) to inherently treat their opinion as if it’s the universal/most common one. 75.83.82.216 (talk) 14:16, 24 January 2024 (UTC)

Immune effects elaboration?

Could someone with knowledge of where to find this info be able to add more detail on the effects of MCAS on the immune system? I’ve seen a lot of confusion over the years as to whether MCAS is an autoimmune condition or whether that label doesn’t technically apply. And a lot of mixed stuff on whether it can somehow ALSO have immunosuppressant effects (barring the effects of various treatments obviously).

Since it’s hard to find clear and consistent info on MCAS that’s at least somewhat understandable to the layman, it would be nice to have that info clearly stated/summarized here! 75.83.82.216 (talk) 14:33, 24 January 2024 (UTC)

Copyright problem removed

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