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It's odd that so many people specializing in an unrelated condition (FND) would care so much about guidelines for ME/CFS.

In the paper, there is this box: Now let's look at some of these items in detail: There is an important omission here which is that exercise makes these abnormalities appear or worses their severity. Since there have now been many papers describing this phenomenon, it should be...

I'm getting the suspicion that many people who support this paper do so because they have no idea about ME/CFS and have been fed misinformation by the PACE trial authors.

That prevalence of PEM varies according to its definition could also mean that there is a need for more stringent diagnostic criteria and clearer definitions of PEM. If PEM is seen in other conditions, that means it's not unique to ME/CFS. That does not contradict the idea that PEM is a...

A lot of this seems of little relevance. The important parts are: the "participants with PEM" treshold for clinical trials, and the question of whether clinical trial outcomes between participants with PEM and without PEM are different. If they are different this would support the decision to...

Actual quote from NICE: https://www.nice.org.uk/guidance/ng206/evidence/d-identifying-and-diagnosing-mecfs-pdf-9265183025 White et al. agrees with NICE so far. A bit later NICE says So let's look at how NICE rated the quality of various diagnostic criteria. According to Google, AGREE II is...

This seems to be another sentence that sounds like a logical argument is being made but then falls apart when examined more closely. White cited this to argue against PEM being considered a required symptom for diagnosing ME/CFS. One would assume that White cited it because it contains data on...

I cam across this paper Apoptosis-induced mitochondrial dysfunction causes cytoplasmic lipid droplet formation A characteristic of apoptosis is the rapid accumulation of cytoplasmic lipid droplets, which are composed largely of neutral lipids. The proton signals from these lipids have been...

Are MS patient organizations aware of how awful CBT/GET studies are?

There was a Finnish review as well but I can't remember if it also dismissed CBT/GET studies. I believe it agreed that PEM was a core symptom.

I'm very conflicted about this project. I'm pretty sure further down the road it will become clear that there are a lot of problems with it. But the claim of being able to repeatedly induce a major improvement (in the same people) is hard to ignore. I suspect the cause for most reported major...

I think these explanations exist to persuade non-patients of the validity and importance of treating ME/CFS with CBT. The target for this misinformation is not us the patients but grant reviewers, doctors, therapists, legal workers, etc.

I posted this because it sounds vaguely connected to some areas of interest in ME/CFS.

Neurovascular abnormalities in mouse models of 16p11.2 deletion autism syndrome are reminiscent of alterations reported in murine models of glucose transporter deficiency, including reduced brain angiogenesis and behavioral alterations. Yet, whether cerebrovascular alterations in 16p11.2df/+...

I believe my average daily step count is similar to a sedentary healthy person, or close to it. I'm not sure because I haven't measured it. My entire day is structured to spare my physical energy reserves so that once per day I can go out for a longer walk or a short swim. It's also possible...

I think the claim that fatigue is independent of activity levels is based on the observation that fatigue questionnaires show improvement with CBT but activity does not increase. One interpretation is that fatigue is independent of activity levels. The other interpretation is that CBT is...

Why are patients even in treatment if the fatigue is not related to activity levels? They could just do whatever they wanted regardless of how fatigued they felt.

According to my memory, in the past pacing was sometimes described by patients as a treatment that could lead to an improvement in the illness. This wasn't a widely shared view. This conceptualization of pacing would sometimes appear on social media. After the PACE trial it seemed that belief in...

Another bit from the manual So in the PACe trial GET sessions took place every two weeks, and therapists were instructed to encourage patients to increase exercise duration for the next two weeks by 20% after a "negotiation" which was accompanied by various other things that would probably...

I'm pretty sure NICE did not invent descriptions of GET as 10% increase in activity every 1-2 weeks. It must have been described that way in some context. The PACE trial GET manual for therapists says on page 36 What is meant with "exercise for the following two weeks negotiated and planned"...