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Interesting. To help me understand, can you explain the way in which NICE 2021 describes PEM more narrowly than Jason? And do you see any differences between how NICE 2021 and the IOM or NIH CDE describe PEM (see below). I'm trying to understand where we might want to push to get tighter...

Fukuda is a polythetic criteria requiring any 4 of 8 criteria. According to Luis Nacul at a US meeting in 2014, 163 different combinations of those criteria satisfy Fukuda. And as I noted more briefly above, in a review of 53 Fukuda studies, Jason found that the occurrence of the hallmark...

To your second point above, PEM after cognitive or other stressors may be different from that after physical activity so a questionnaire that correlates with 2-day CPET findings may be too narrow

@Adam pwme - I have not heard yet but will follow up this week.

This is the crux of the issue. Studying those who meet Fukuda but do not have PEM may be important. But today, researchers are still using Fukuda and then labeling the cohort as an ME/CFS cohort when they publish. At what point should those use a different label for their cohort? (Edited to add...

My point was purely about the criteria, not the quality of the methodology or findings . Even if the study is superbly designed and executed on every other count, if the criteria used are so non-specific as to require nothing more than medically unexplained fatigue, then to whom/what conditions...

Could their choice of selection criteria have also contributed? By its nature, criteria that are focused on medically unexplained fatigue could overrepresent for people who could respond positively to talk therapy and exercise while underrepresenting people who have ME and thus would experience...

This post has been copied and following discussion moved from this thread: UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion _________ Could their choice of selection criteria have also contributed? By its nature, criteria that are focused on medically...

So does this suggest its reasonable for ME researchers to identify ME cases in their studies using whichever of Oxford, NICE 2007, Fukuda, IOM, CCC, ME-ICC, and NICE 2021 they prefer? And does that apply to Long COVID researchers who wish to identify ME cases in their cohorts? I'd think...

I agree with your point #1. I was thinking of point 2 - selecting a comparable cohort of people across studies. The US has established the IOM to identify ME/CFS clinically. But NIH's position has been that we don't know enough to say that even PEM should be required in research and that...

Excuse me if this is a dumb question or it works differently in the UK. But will those receiving new research grants from UK government bodies be required to use the criteria in the 2021 NICE guidelines to select ME cohorts? Or it that just for clinical care and they can they continue to use...

Does anyone know the authors of this study. The article is high level and refers to supplementary material for the details but that material doesn't appear to be available. Trying to anticipate whether this will be useful or not. Edited to add the authors: Daniel Munblit1,2,3, Timothy...

Natelson was one of the doctors in CDC's Multi-site Clinical Assessment of CFS that started in 2011-2012 and saw patients over a few years. Other doctors included Klimas, Bateman, Kogelnik, Peterson, Podell, and Lapp. They used a common core set of assessments across centers but AFAIK, Natelson...

@snow Thanks for this, @Snow Leopard - interesting poll and confirms what I thought

I'm not at liberty to speak for Cochrane but will ask for an update for the community.

This comment's author disclosure states: KGB reports "he is currently involved in the work with a review based on individual patient data that is about CFS/ME and exercise therapy. HK reports he "is currently preparing a review based on individual patient data of the outcomes of CBT for...

@Snow Leopard - I'd like to better understand that difference. Has this ever been studied and/or written up anywhere? And if not, would you mind adding a little more on this? Thanks in advance

As @Adrian noted, the IOM used similar language - ME is a positive diagnosis, not an exclusionary one in the sense that it relies on positively identifying features like PEM, unrefreshing sleep, substantial impairment compared to pre-illness. In parallel with identifying those features, a...

Post copied from a NICE guidelines thread FYI - CDC has posted the NICE Guidelines on its ME/CFS website, in the resources section for healthcare providers https://www.cdc.gov/me-cfs/healthcare-providers/index.html#resources Edit: I meant they posted a link

At today's CDC stakeholder engagement call, Dr. Beth Unger made the following statement about the evidence review that they had contracted with a group (OSHU) in Oregon to conduct. Bottom line, neither they nor OSHU will be publishing the review in a peer reviewed journal. They will post it...