Talk:Chronic Lyme disease

Balance of page and WP:UNDUE

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:

• "Chronic Lyme" is not recognized by practitioners and researchers.
• There is little evidence to support the use of antibiotics as treatment.
• People claim to have the disease despite never receiving a Lyme disease diagnosis.

Let's discuss what other content is appropriate to be included. _{too_much} curiosity (talk) 18:19, 19 May 2024 (UTC)

There has been some guidance by Dyanega already in edit summaries, but what you're running into issues with here when you talk about "balancing" an article is WP:FALSEBALANCE. 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)

I understand the guidelines. And, most of the time I err on the side of caution with WP:DUE, preferring to exclude rather than include info. Perhaps "balance" is the wrong word for what I'm trying to describe, since I'm not at all trying to balance the page with bogus claims. Rather, I guess I'm trying make the page more "humble", since the current page has a slightly dismissive tone.

I do think it's important to note a change in attitudes among researchers. Fibromyalgia used to be thought of as an affective disorder, but is now treated as one of unknown biological origin. The Time article I included in my edits quotes researchers reexamining it through a similar lens.

I do not believe my previous edits assigned undue weight to a minority view since they clearly stated the medical consensus. Is there anything in my edits that should be excluded? Why? I think I'd find a more detailed discussion to be helpful. _{too_much} curiosity (talk) 18:54, 19 May 2024 (UTC)

@Toomuchcuriosity Thanks for your comments and suggestions.

I don't think the Time piece is reliable, and it should not be used to support "a change in attitudes among researchers".

The Time article mostly quotes or links to researchers who are funded by CLD advocates. The article does not disclose the conflicts of interest. The article photographer (who seems to be essentially a co-author) is a CLD patient. It seems to me that a major development is the money going to some academic researchers from CLD advocates. These researchers are then promoted in the media, including by university press offices. Sources:

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

As of today, the Cohens' web page for "Lyme and tickborne diseases" says "Over $102 million to 60+ projects since 2015."

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

ScienceFlyer (talk) 22:29, 19 May 2024 (UTC)

@ScienceFlyer I really appreciate you taking the time to explain the issues with the article. Based on that info, I agree that it should be excluded. _{too_much} curiosity (talk) 13:18, 20 May 2024 (UTC)

With all due respect, this is a topic on which some elements of the consensus (though dated) medical opinion are simply wrong. It is too disheartening for patients with persistent Lyme infections, a phenomenon that is clearly very real and very well-documented throughout the medical and the research literature, to read here on wikipedia that their condition, despite being incurable by extended antibiotic therapy, isn't real. At this point, the strong scientific consensus is at odds with the recalcitrant medical position of the IDSA and it's time for wikipedia editors to acknowledge the overwhelming scientific consensus that Lyme spirochetes can and do persist indefinitely. There are thought to be at least 1,200 Lyme suicides per year in the US and one of the root causes is societal skepticism. Wikipedia should not continue to contribute to this tragedy. Chronic Lyme may not be the preferred medical term, but it no longer deserves to be associated with pseudoscience. It's both harmful and also objectively wrong. 128.249.96.13 (talk) 00:25, 14 August 2024 (UTC)

"clearly very real and very well-documented throughout the medical and the research literature" ← err, citation required. On the rare occasions serious publications go near to the topic, they seem to call it a scam e.g. doi:10.1016/j.medmal.2019.01.001. Bon courage (talk) 03:32, 14 August 2024 (UTC)

"Treatment harms" section

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.)

• The well-established side effects of antibiotics.

• Bee venom therapy can result in anaphylaxis and death. (ref)

• Ozone treatments have been associated with complications, including death. (Ref 1, ref 2)

• Use of disulfiram has caused toxicities and a death (ref 1 authored by French CLD advocates, ref 2, ref 3)

• Harms to children (ref 1, ref 2, ref 3, )
• Older treatments like malaria and bismacine

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)

This sounds interesting. Go for it. -- Valjean (talk) (PING me) 22:41, 19 May 2024 (UTC)

I read the bee venom therapy as a marker of desperation for finding working treatments, and I feel silly not thinking about how it can be misconstrued by others... I just feel the need to explain that my goal is not to promote bogus, and hope that my edits are assumed to be made in WP:Good Faith. _{too_much} curiosity (talk) 13:19, 20 May 2024 (UTC)

I urge you to think about your motivations in compiling this proposed section. Why are you doing it? 128.249.96.13 (talk) 00:27, 14 August 2024 (UTC)