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That's how it seems. Why is that? Seriously, not being sarcastic. Just trying to understand.

I'm not defending them on this point. This is something that many of us called out when they first released the protocol and again during the comment period. But I also see this is an example of the challenge that "evidence-based" medicine and practitioners of evidence based reviews have when...

AHRQ originally lumped together evidence from any CFS, ME, ME/CFS, etc definition and treated them all as representing the same clinical entity. But then both AHRQ and the NIH rejected Oxford as an acceptable definition because it includes patients with other fatiguing conditions. And AHRQ...

I agree that there's no evidence of efficacy in light of the methodological issues, problems with switched outcomes, bias, use of subjective outcomes in unblinded trials, etc. Poorly run trials should not be accepted as the basis of recommendations for a given disease. But I think its also...

I think its partly the line of least resistance - what I might call their following the predominant narrative about ME/CFS being related to deconditioning, patient fears, and anxiety and depression and the general narrative that all exercise is good for all people. When in doubt, tell patients...

@Jonathan Edwards Yes, I do. Its a PDF Just to clarify - they did not mention "evidence-based" - I did because medicine touts the value and necessity for everything being evidence based but in ME at least, its lipstick on a pig Two core issues to me are that 1) the ME evidence base is still...

The Harvard article is another demonstration of either the schizophrenia or the unthinking nature of "evidence-based" medicine when it comes to ME. Mixing and matching good biomedical disease evidence with BPS management practices without apparently thinking whether it makes medical sense for...

I'm not understanding this comment. The IOM provides substantial evidence that multiple systems are involved. What am I missing?

Thanks for the heads up, @Andy . The CFSAC site as of January 28th, is in the Wayback Machine. https://web.archive.org/web/20190128204917/https://www.hhs.gov/ash/advisory-committees/cfsac/index.html I have not confirmed that this includes everything from the site yet.

Hi @aguilarj2 Do you mind a few questions? - Do you have a fuller description of the goals of your research? - Can you explain the source of these questions? I recognize SF-36/Rand-36 but not sure about the rest. - This has 216 questions. It would be good to tell patients that as it might...

True, its cumulative incidence and lack of recovery. But still, would we really expect prevalence of ME to rise in every 10 year interval and be the highest in those who are 80-89 years old? That would seem to suggest that new cases are arising in the 70-90 year old cohorts and/or people with ME...

I've just skimmed the paper and havent dug enough to clarify what they did but have the same concern as the prevalence paper. This is a US data set and ICD codes were used in the analysis. In October 2015, the US implemented ICD-10-CM which reclassified CFS to be equivalent to the symptom of...

This is an important point. I think we are likely to see this issue come up more often as researchers attempt to use medical records or patient reported diagnoses of CFS as the basis of their research. I'm wondering if we need some kind of white paper to lay the issues out for researchers new to...

Fantastic letter! Thank you, @Trish

Yes, of course. Totally agree, they played a significant role in the CIBA proceedings. I was thinking of Straus' ongoing engagement with UK direction - his strong endorsement of the 1996 UK Royal Colleges report on BPS and NIH's 2000 "consultation" to "improve the quality, direction and extent...

I agree - NIH had a direct role in endorsing/accepting the UK BPS model and in perpetuating the neglect and misunderstanding. So NIH leadership now has to take a direct role in fixing it.

This situation is a quagmire that is going to take many years more to correct if we wait for normal institutional processes to fix this in their own timeline. Leadership from the top is essential Collins is not "personally" the problem but his lack of serious, focused leadership and that of...

Interesting point. Thanks for posting I'd think that up to certain age, the high rate in prevalence in older patients could also reflect the poor prognosis/low rates of recovery - that is, patients at age 60 include those who became ill at 20, 30, 40, etc as well as 60. But if that were the...

But most of those 8 symptoms are not unusual or distinctive and there are 163 different combinations of them when you specify any 4 of 8 symptoms. Nacul pointed out that only 20% (if I remember correctly) of those combinations require PEM. So in practice, lots of conditions can be stuffed into...

@Michiel Tack - good point about continuous enrollment. That would certainly help that. And you are right about the US epi studies - remarkably few kept a CFS diagnosis even two years in a row in that study.