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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"...

My favorite.

They're trying to fabricate controversy by selectively presenting bits of information to an audience that can't tell it's being shown information in a manipulative manner. The whole thing falls apart when the information is added that CBT/GET proponents were given every opportunity to discuss...

Possibly related: SERPINA5 is an anticoagulant. https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-023-04179-3

One of the reasons for graded exercise therapy was this idea of a strong stress response to exercise, and the assumption that regular exercise would dampen the response (as has been shown in healthy people). This again raises the question of whether this stress response was assumed to exist in...

Complex presentations are more likely when comorbidities are present. Using the ICC in research could be similar to only recruiting people with ME that also have other health problems. It would unnecessarily adds noise and complexity to the data. The stated reason the ICC is being promoted by...

It's not just cortisol Box 1. Major stress-related hormones typically affected substantially by an acute exercise session Adrenocorticotropic hormone Atrial natriuretic peptide Arginine vasopressin β-endorphin Brain natriuretic peptide Corticotropin-releasing hormone Cortisol Cytokines...

Teaching kids false ideas about how to manage serious illness, or every day doubts and insecurities and uncertainties is not going to be good for their mental health.

The other day I learned that exercise is a strong trigger of the release of various hormones and signalling factors that we might label as stress signals. Some of the after effects of exercise that I experience feel exactly like my body continues to be stressed for hours afterwards, or even...

It's just the way he tries to distract from the fact that he's confidently expressing uninformed opinions on ME/CFS/LC and gets criticized for this by folks who know more about the topic.

I've been examined by two neurologists and neither ever suggested anything psychosomatic. Perhaps belief in FND is a culture specific thing affecting neurologists in some countries more than others?

It would be nice to know the details of these antibodies. What do they bind to? Have they been associated with other diseases?

Various sources describe how salt affects cell membranes: it induces membrane depolarization, reduces stability, and other changes.

What about testing to see if any metabolic abnormalities are present? I've heard about urine organic acid tests. Is this the kind of thing that could be useful? Are the things I'm describing enough to suspect some metabolic problem of the kind that can be detected with widely available tests?

It feels like that for me too. Some of it might be an overcompensation due to impending hypoglycemia, which causes hunger. The hypoglycemia is actually most of the time what I would call pre-hypoglycemia which I believe is a state where glucose would continue to fall to hypoglycemia levels if it...

I could come up with some specific questions but there's nothing that clearly suggests an important nutritional problem in my case (as far as I can tell). Still, I'm curious if a nutritionist might be able to figure out a way to improve my health. Does such a request fall within the usual work...

Re. NIH and a documentary. One could interview Nath or Whittemore once they have published the findings from the NIH intramural study. It would be a nice contrast to the UK research scene which, with a few exceptions like DecodeME, insists on remaining in the dark ages when it comes to ME. (in...