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@chrisb - have you heard of James B. Talmage in this area? He authored a chapter on CFS in an AMA guide for the Evaluation of Work Ability and Return to Work that framed a patient not working as the patient's choice and inability to tolerate normal symptoms. Has published other articles on...

Thanks @MEMarge, @Andy and @rvallee for the feedback. @MEMarge - do you know if the top 25 will be published and if so when?

My apologies if I missed it but will the James Lind Alliance release a collation of the input they received and if so, have they said when? And on a related note, has the MRC run such an exercise recently? Outside of the funding for Decode, it all looks old - e.g. this call for research into...

CDC's original plan had been to use this review as the first step in developing treatment guidelines. But in MEAction's initial communication about this draft review, posted by @Hutan above, they shared an email from CDC's Dr. Unger saying CDC will not be using this review to develop treatment...

I agree that CPET findings do not demonstrate/are not the same as PEM. I was just referring to the fact that they also record symptoms at baseline and at times post exertion 1 and exertion 2. So while my CPET results may be similar to or even worse than a person with ME, I had no symptoms at any...

I could be wrong but I assume that NAM would need to be commissioned (paid) to do an updated review. The previous review was commissioned by HHS agencies - I'd have to dig it up to confirm but I think it cost $1M

The 2 day CPET studies - at least the ones m familiar with including two I was in as a control - also record symptoms at baseline, during the tests and in the days. So wouldn't that be sufficient to tell us something about PEM - at least PEM caused by physical exertion? Also, if I remember, a...

@HMB The ME/CFS evidence review is still available on the main AHRQ site for evidence reviews where its marked as archived with the note that "the report is greater than 3 years old. Findings may be used for research purposes, but should not be considered current." I didn't realize that AHRQ...

But those age-predicted maximum heart rates are based on healthy normals. I may misunderstand but I thought Workwell was saying that in ME populations, those calculations were not appropriate as they overestimate the target heart rate. Am I missing something?

Per the Workwell CPET methods paper, CPET testing reports out a measure, respiratory exchange ratio (RER) which shows level of effort. RER is the ratio of VCO2 /VO2 so I'd imagine it would be hard to cheat on that one. An RER of greater than or equal to 1.1 is considered maximal effort and is...

In the US at least, CPET is used to support disability evaluation and I know of patients that had it done as far back as 2011 for that purpose and not for diagnosis - Edited to fix an error at least not recommended for diagnosis by most of the ME clinicians I took "undergoing CPETS for...

Fukuda explicitly defines idiopathic chronic fatigue (ICF) as: "A case of idiopathic chronic fatigue is defined as clinically evaluated, unexplained chronic fatigue that fails to meet [Fukuda] criteria for the chronic fatigue syndrome" So I had assumed they used ICC for ME/CFS and Fukuda for...

Interesting. Thanks for highlighting. I'll have to dig into that work further.

You may be right about the 1978 conference. But Shelekov (of NIH, NIAID) had done work in this field. Together with and Henderson (of CDC), he published this 1959 paper in the New England Journal of Medicine on a series of epidemics from 1934 up to 1958. At the time, they referred to it as...

Fascinating, @chrisb Thank you for all this as I had never run across this. Interesting connection to Kleinman and the Ciba conference. I had assumed that Straus shifted to a psychogenic model after his Acyclovir trial failed to show anything. That study was published in 1988 but ran from...

Interesting question, @chrisb. Maybe cynical but did the 1978 international symposium held at the Royal Society of Medicine bring attention and potential legitimization that generated interest in an interest in alternative, less expensive approaches of managing? This symposium followed a stead...

@chrisb - Do you have a link or other information on that Toronto conference? I'm not sure I've heard about that before

@Hutan - Yes it is the same review. And no, for reasons I am sure you understand, I won't be saying anything at this time. My comments on the 2014/2016 ME/CFS systematic evidence review/addendum by this same group are in the public domain.

Excellent. Thank you, @Trish and @Andy

I'm down a rabbit hole and wonder if anyone can help The draft consultation for the 2007 NICE guidance includes a table comparing CFS and ME criteria (page 13 of this document). Does anyone know if such a table exists in the 2020 draft consultation documents and if so, which document it is in...