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I'd think the very fact that researchers are using exercise challenges specifically because exercise exacerbate the disease adds further support to the view that exercise as a treatment puts patients at risk of harm. And these studies are investigating and reporting increased symptoms, decrease...

AFAIK, in the US at least, patients have gotten the tests through research labs or in some cases through commercials labs when the tests can be run the same day as the draw. But I understand that in many cases, the commercial labs here take more than 24 hours to process the samples. Edited to...

I've understood the evidence for NK cell dysfunction differently. Articles in 1987 and 1990 by two different groups both found low function. And at least one other group has replicated those fundings since then. I have not heard that NK cells are fine but a serum factor is the problem. But the...

AFAIK, others have replicated the findings, although I have heard one researcher who did not. The IOM report said quite a bit about NK cell function and even recommended it in the clinician guide as a potential test to aid diagnosis clinically, although admittedly not specific to ME...

The IOM discussed the following but were criticized even in 2015 for missing key studies: 1. impaired immune funnction with a highlight on NK cell function "The committee’s literature review yielded data demonstrating poor NK cell cytotoxicity (NK cell function, not number) that correlates with...

There's a lack of replication and some inconsistencies but the IOM report concluded "Sufficient evidence supports the finding of immune dysfunction in ME/CFS. Of course, this doesn't mean that the immune system is the ultimate driver of the pathology but I think there's solid evidence its...

Just to clarify... The CDC ME/CFS website does not recommend a specific ICD code and it does not use the term "SEID." It has used the term "ME/CFS" since it rolled out the IOM criteria.

Just to clarify... the only country in which CFS and ME have two different codes is the US. Every other country follows the World Health Organization, which classified both CFS and ME at G93.3 where they share the same code as the lead term "post-viral fatigue syndrome." The ICD-10-CM proposal...

This is suggesting that the diagnosis of ME should be based on first excluding all other conditions. That's what Fukuda did and that lead to this disease being viewed as a wastebin diagnosis once all the "real" diseases were excluded. IMO, one of the things the IOM did well for clinical...

Are you asking whether the community should challenge medical providers not to use the IOM criteria, the SEID name or both? Regarding the IOM criteria - I know some US patients do not want to see the IOM criteria used but others do support its rollout. I pushed for the CCC multiple times over...

In the US, the IOM criteria are being implemented and when medical educators and medical societies have used the term "SEID," it is explicitly because they have adopted the new criteria. Those guidelines specify that at least substantial impairment, PEM and unrefreshing sleep plus cognitive or...

Definitionally, the CFS criteria never require PEM and other hallmark criteria. But PEM is a hallmark of ME. Because of these definitional differences, the IOM explicitly stated that "a diagnosis of CFS is not equivalent to a diagnosis of ME." In my opinion, to untangle this mess, these two...

Yes, "CFS NOS" needs to be retained for data aggregation purposes. But "CFS NOS" is proposed to be retained under the subcode for "CFS" and is no longer the main term.

@Inara - The ICD-10-CM and disease name situation in the US is an mess. Historically, US medical education providers and doctors have used the term CFS even when the patient meets the CCC or the ME-ICC. But CFS is equated to the symptom of chronic fatigue so that impacts medical perception...

@Inara The IOM explicitly stated that "a diagnosis of CFS is not equivalent to a diagnosis of ME" in a discussion of CFS and ME definitions. It also stated that not all Fukuda CFS patients will meet the IOM criteria. So they clearly saw CFS and ME as different things. PVFS is an ambiguous...

In a nutshell, CFSAC, the US government advisory committee that provided recommendations for action on issues related to ME, was disbanded by HHS with no warning or discussion. The explanation was that its mission had been accomplished. Ridiculous. Please tweet if you can, even if you can't post...

"Models are not neat, packaged, irrefutable explanations" Exactly! Models are used to organize thinking so you can test and refine. And they are based on what is already known about the science. But there's no science behind this and they never seriously attempted to test it.

That's what Dr. Komaroff has said. He was added as a section chief at the point that he agreed to work with them. UpToDate's last update incorporated info about the criticisms of the PACE trial and Oxford definition and AHRQ's decision to downgrade CBT and GET but then inexplicably still...

Thank you for posting on this. I agree this book is a really useful lens to look at a pivotal point in the history of this disease . I agree - the biomedical discussion is overwhelmed by the other researchers. I think it might have begun to take hold in the late 1980s with some of Wesseley's...

Thank you, @Trish and @Dolphin