Interesting article in Nature News:
Low-quality papers based on public health data are flooding the scientific literature
The preprint the article is based on specifically mentions the "concerning trends" regarding "works poorly employing two-sample Mendelian randomization applied to openly...
That MEA article has nothing to do with apps or Elaros or this [the Elaros] thread. It's a direct response to the claims made about the MEA in the recent, dreadful, "chronicity rhetoric" paper. The extracts are direct quotes from that paper - CS is just illustrating what he's responding to...
Surprisingly, MEA have commented on this:
https://meassociation.org.uk/2025/07/mea-defends-how-we-raise-money-for-research-how-we-spend-it-and-our-position-on-referring-unproven-claims-about-recovery-programmes-to-the-regulatory-authorities/
What is sad about this is that neutral ethnographic research would have been a valuable contribution. We only really have occasional anecdotal patient reports as to what goes on in these clinics. If the authors had simply recorded what was being done and reported on it - or, even better, if they...
This is actually a rather interesting study.
Using the question "What do you think is the cause of your problem with fatigue/energy?" - an open, neutral question - as a baseline showed that patients viewed their illness as overwhelmingly physically driven. But when patients were prompted with a...
A strongly worded letter from JE, and a really good result:
Once again, we appreciate that you have "cleared up" what appeared to be a misrepresentation of our inadequate wording with your articulate and convincing argument. We clearly accept your findings and thank you.
Hopefully the authors...
Two more thoughts:
To what extent is it appropriate, in a supposedly scientific paper, to give your "informants" space to complain about an organisation - the MEA - that has nothing to do with the subject of your paper (supposedly fibromyalgia)? I haven't heard of any research team doing this...
NIHR:
"The Efficacy and Mechanism Evaluation (EME) Programme is accepting full applications for research looking into the treatment and management of post-acute infection syndromes and associated conditions, including long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)."...
I was rather curious that the papers recommended to be cited (!) by Dr Conti appeared in the same obscure journal by the same obscure Italian publisher, "Biolife", with which it appears that he is closely associated. A couple of searches led me to these articles concerning Biolife...
The Sick Times has a story on the "contradictory" and "deeply concerning" Canadian LC guidelines:
https://thesicktimes.org/2025/07/08/experts-call-new-canadian-long-covid-guidelines-contradictory-and-deeply-concerning/
Includes some FOIed emails from Paul Garner, who was trying to influence...
Abstract:
Background
Sphingomyelin phosphodiesterase acid-like 3B (SMPDL3B) is emerging as a potential biomarker and therapeutic target in myalgic encephalomyelitis (ME), a complex multisystem disorder characterized by immune dysfunction, metabolic disturbances, and persistent fatigue. This...
This paper:
https://pmc.ncbi.nlm.nih.gov/articles/PMC11853495/pdf/12879_2024_Article_10238.pdf
describes the use of genetic data from Geisinger MyCode (part of an American EHC; CFS defined as ICD-9 780.71 or ICD-10-CMR53.82).
I think it would be worth an attempt to try to have the CKS improved. NICE clearly made an effort to create a balance with the composition of the the ME/CFS guideline committee membership, and the result was essentially a compromise between the psychobehaviouralists and those on the committee...
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