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The current page takes a strong stance against the label "Chronic Lyme Disease". This is understandable given current medical guidelines. However, there needs to be room to address the points of view of patient advocates and researchers reassessing it's status.
What I believe is incontrovertible:
Let's discuss what other content is appropriate to be included. too_much curiosity (talk) 18:19, 19 May 2024 (UTC)[reply]
Wikipedia policy does not state or imply that every minority view, fringe theory, or extraordinary claim needs to be presented along with commonly accepted mainstream scholarship as if they were of equal validity. If specific research has moved from minority view to mainstream that can be discussed, but there are some underlying fundamentals people often misunderstand when it comes to what is considered WP:DUE in medical topics. KoA (talk) 18:32, 19 May 2024 (UTC)[reply]
As with other antiscience groups, some Lyme disease activists have created a parallel universe of pseudoscientific practitioners, research, publications, and meetings, arranged public protests and made accusations of corruption and conspiracy, used harassment and occasional death threats, and advocated legislative efforts to subvert evidence-based medicine and peer-reviewed science. Politicians, the media, and the public have been left trying to discern the scientific facts from the pseudoscientific ones, with many regarding both as equally valid as they try to be fair and balanced. When such inappropriate and uncritical weighting occurs, public and government officials unknowingly come to accept or even endorse highly unconventional and sometimes dangerous theories and therapies.
— Auwaerter, et al, 2011
In some cases, even clinicians who’ve harmed patients end up being defended by vocal, organized, and well-funded networks. Groups such as the Global Lyme Alliance and the Bay Area Lyme Foundation are flush with cash; the hedge fund manager Steven Cohen, whose wife, Alexandra, has persistent Lyme symptoms, has given more than $50 million toward related groups since 2015. They also boast celebrity allies such as Justin Bieber and Avril Lavigne, both of whom received Lyme diagnoses and have shared details of their alternative treatment protocols.
— Bloomberg, 2020
Steve Cohen, the hedge-fund billionaire purported to have inspired Billions, has committed more than $60 million to Lyme and tick-borne-disease causes. His wife, Alexandra, is a chronic-Lyme patient. Several universities that pursue research topics friendly to the chronic-Lyme cause — such as Columbia and Tulane — are among the recipients of his largesse.
— New York Magazine, 2019
A new center at Columbia University will open this summer to patients. The Cohen Center for Health & Recovery from Tick-Borne Diseases has been established through a $16M grant from the Steven & Alexandra Cohen Foundation to Columbia. [...] Dr. Fallon is also Director of the Columbia Lyme & Tick-Borne Diseases Research center, which was established in 2008 by the Lyme Disease Association Inc. and Time for Lyme (now GLA).
— CLD advocacy group Lyme Disease Association, 2021
One San Francisco Bay Area family decided to make a search for a cure for chronic Lyme disease their personal mission after all four members of their family tested positive for Lyme and co-infection diseases. Aiming to prevent others from enduring a similarly painful chronic health trauma and to shed light on the complex disease and encourage further investment in research, Emily and Malcolm Fairbairn have made a $2.14 million gift to the MIT School of Engineering to fund a two-year research project examining a physiomimetic analysis of acute and chronic Lyme disease.
— MIT press office, 2020
[Emily Fairbairn's] $2 million gift to Iwasaki’s research toward Long COVID and finding a cure for chronic Lyme disease stems from both a personal and altruistic mission. Her daughter was diagnosed with chronic Lyme disease while a student at Harvard. That diagnosis led Fairbairn to uncover the source of her own years of physical suffering. In fact, they learned that her entire family, including their dog, was grappling with chronic Lyme.
— Yale School of Medicine press office, 2023
I propose to create a new "Treatment harms" section with new and existing material. I've been accumulating references, which might be useful: There is a newer review article describing treatment harms, as well as an older review of dozens of "unorthodox" treatments". This suggestion is semi-related to the edits proposed by @Toomuchcuriosity which cites an unreliable Time magazine article that promotes dangerous bee venom therapy. (I agree with mentioning treatment delay in the article body.)
I'm not sure how this would best be presented stylistically but maybe it's a good idea to just start it and see how it evolves. ScienceFlyer (talk) 21:09, 19 May 2024 (UTC)[reply]