Talk:Controversies related to ME/CFS

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Oxford criteria[edit]

This appears to have been abandoned in research now, due to mixing idiopathic chronic fatigue patients or those with chronic fatigue from other causes with CFS patients, and trials results appear to depend on whether Oxford studies are included or excluded. ARHQ 2016 report recommended dumping it and US research no longer uses it. Amousey (they/them pronouns) (talk) 23:51, 17 July 2020 (UTC)[reply]

ARHQ 2016^[1]

References

^ Smith ME, Nelson HD, Haney E, Pappas M, Daeges M, Wasson N, McDonagh M (July 2016). "July 2016 Addendum. In Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome 2014 Dec". Evidence Report/Technology Assessment. Agency for Healthcare Research and Quality (US): 1–433. Existing treatment studies examining counseling and behavior therapies or graded exercise therapy demonstrate measurable improvements but may not yield improvements in quality of life (QoL). Therefore, these interventions are not a primary treatment strategy and should be used only as a component of multimodal therapy.

GET[edit]

Is it worth moving the GET parts to a separate heading? I believe there have been some anti-GET campaigns in the past, and it had been dropped by the Dutch Health Council and CDC in the last few weeks. Later this year the UK will announce whether it will be dropped. Amousey (they/them pronouns) (talk) 23:51, 17 July 2020 (UTC)[reply]

Hallmark symptom: Post-exertional malaise[edit]

Fatigue appears to have been replaced by PEM as the hallmark symptom. I have noticed a number of studies using the Fukuda criteria with compulsory PEM or with SEID criteria also met, plus biomedical studies using the Canadian working definition which includes either post-exertional malaise or post-exertional fatigue. Amousey (they/them pronouns) (talk) 23:51, 17 July 2020 (UTC)[reply]

Sentence in Lead[edit]

This sentence in lead is problematic in my opinion:

“Some professionals within the medical community do not recognize ME/CFS as a genuine condition, nor is there agreement on its prevalence.”

While it is partly true it can easily be misinterpreted as saying that it is contested if ME/CFS is a genuine condition.

These professionals who do not recognise it often have little to no education or experience with ME/CFS. Of those with extensive experience only a small and dwindling minority doubt it, the CDC, NIH, NHS, Mayo Clinic etc. all accept ME/CFS as a genuine and very disabling condition.

Additionally this claim uses only sources from the 90s and early 2000s and is very not upto date.

Can we rephrase or update or even remove it?

YannLK (talk) 18:07, 13 April 2024 (UTC)[reply]

I have edited the lead, feel free to discuss. YannLK (talk) 10:07, 15 April 2024 (UTC)[reply]

Researcher Harassment Section[edit]

Is it worth keeping this section since it seems the claims of harassment were “wildly exaggerated”.

An in between would be to shorten the section and then move that section into the PACE trial section. YannLK (talk) 13:07, 14 April 2024 (UTC)[reply]

have made this section a subsection of the “research related” section YannLK (talk) 11:56, 15 April 2024 (UTC)[reply]

Only the PACE trial harassment was "wildly exaggerated", but most of the harassment predates the PACE trial (e.g. McClure and Wessely), and much of it is verifiable (e.g. people publicly comparing Wessely to Mengele).

Currently the section doesn't seem to be POV, as it brushes aside all the harassment as being non-existent, which clearly isn't the case, as anyone who has anything to do with CFS knows all too well. MastNut (talk) 16:19, 15 April 2024 (UTC)[reply]

I rectified the judge ruling to only be related to the PACE trial. And added extra sources for reliability. YannLK (talk) 17:48, 15 April 2024 (UTC)[reply]

Also harrasment is not non-existant, but the section does include a judge ruling and an research analysis which both concluded the claims were overplayed. YannLK (talk) 17:49, 15 April 2024 (UTC)[reply]

If you give me some reliable second hand sources showing considerable harassment before 2011 (the pace trial). I will be happy to add it to the article. YannLK (talk) 18:12, 15 April 2024 (UTC)[reply]

I gave two examples, Wessely and McClure, but there are many more. Those are just off the top of my head. They were included in the article prior to about 2017 when Wilshica removed them as she said it was better to not include quotes from individuals per wikipedia policy. However, doing that seems to have slanted the article to make it look like there was no other harassment, so it's quite NPOV at the moment. And David Tuller's blog isn't really a reliable source for the SMC portraying CFS as a psychological condition. I think the entire section needs someone to take a good look at all the sources available and rewrite it. MastNut (talk) 19:58, 15 April 2024 (UTC)[reply]

Maybe we can ask if @Femke or @Ward20 or @The Quirky Kitty (who are the most active people editing ME related wikipedia) could take a look once the whole FAC thing is done. YannLK (talk) 21:09, 18 April 2024 (UTC)[reply]

Also this article gives more specific details (including the fact that Tuller, who is used as a source, is attacking researchers himself). https://www.reuters.com/investigates/special-report/science-socialmedia/ MastNut (talk) 20:27, 15 April 2024 (UTC)[reply]

[Smith2016-1] Smith ME, Nelson HD, Haney E, Pappas M, Daeges M, Wasson N, McDonagh M (July 2016). "July 2016 Addendum. In Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome 2014 Dec". Evidence Report/Technology Assessment. Agency for Healthcare Research and Quality (US): 1–433. Existing treatment studies examining counseling and behavior therapies or graded exercise therapy demonstrate measurable improvements but may not yield improvements in quality of life (QoL). Therefore, these interventions are not a primary treatment strategy and should be used only as a component of multimodal therapy.

[1]