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Copied from the Wessely thread This has just reminded me of something. Many, many years ago I posted a bunch of "bad ME quotes", derived solely from my own reading, to a now-defunct Google (or was it Yahoo? or maybe even Usenet?) group. I think there may be some limited overlap with Williams'...

Indeed, which is why I mentioned that I would've liked to see testing for a wider set of markers. Both aldolase & LDH are more widely expressed, having central roles in glycolysis, & obviously they have far lower sensitivity & specificity for muscle injury but nonetheless might well have been...

Thanks, I missed that post - your point about the timings is well made, although I think if there were an atypically high exercise-induced CK elevation in ME patients I expect there would've been a number of case reports already and we would know about it by now. Nonetheless, a very interesting...

And if it is significant there should be corroborative biochemical evidence of this - a very quick skim of the paper shows that they tested for CK & there was no elevation. Perhaps it might have been useful to test for other potential markers (off the top of my head: lactate dehydrogenase...

I think we need to look at this at two different levels. Firstly, from the perspective of a person diagnosed with "FND" they have remarkably few options. Unlike pwME who have always had (a small number of) sympathetic physicians & specialists the lot of someone with (say) pseudoseizure has...

Making a thread for this because there are very few post-viral/post-infectious conditions where the pathophysiology remains enigmatic and because there are intriguing parallels with ME/CFS. In headache-specialist neurology clinics the diagnosis of NDPH (new daily persistent headache) is...

A long time ago I chased down some of the references in SW's papers - in his infamous "Old wine in new bottles" paper, he references the preface to Dr Anne Macintyre's book "M.E. / Post-Viral Fatigue Syndrome, How to live with it", written by Prof. E.J. Field, in support for this supposed...

Just done this. A few initial thoughts: 1) On the "level of physical function" question: the two closest options for me are ".. 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform desk work 2-3 hours a day, but requires rest periods." and "...

For anyone wondering how medical dictionaries define "malaise"... Mosby's medical dictionary: malaise [Fr, discomfort] a vague uneasy feeling of body weakness, distress, or discomfort, often marking the onset of and persisting throughout a disease Webster's New World medical dictionary...

Full letter is here. Same old. https://www.theguardian.com/theobserver/commentisfree/2022/apr/10/observer-letters-ofsted-take-note-learning-is-about-more-than-recall

Chronic fatigue syndrome and subsequent risk of cancer among elderly US adults Cindy M. Chang PhD, MPH, Joan L. Warren PhD, Eric A. Engels MD, MPH Abstract BACKGROUND: The cause of chronic fatigue syndrome (CFS) is unknown but is thought to be associated with immune abnormalities or infection...

I think that was the request to QMUL that @dave30th discusses here: I think what many of us would like to see, short of the dataset being made public, is an independent reanalysis. Given that Fiona Watt has stated that the data is available via a platform called "Vivli" and that access requests...

I hadn't seen this before; I've just done it. A few comments (under a spoiler tag, as I discuss specific questions):

Same with "complex". Peptic ulcer being caused by a pathogen seems simple enough in retrospect but was not at the time; perhaps in a decade ME will be considered a disease with a straightforward pathophysiology. The fact that we don't currently understand it doesn't make it complex. In a...

On the dietician-with-a-specialist-interest recommendation - I thought this was bizarre, but it's specified in the GL ("Refer people with ME/CFS for a dietetic assessment by a dietician with a special interest in ME/CFS if they are (a) losing weight and at risk of malnutrition; (b) gaining...

A few random thoughts: 1) There seems to be an assumption throughout this document that there currently exists a pool of ME/CFS "experts" who need to be further empowered in various ways. The people currently claiming to be experts are mainly the same liaison psychiatrists and rehabilitationists...

There is one other possibility. I believe NIHR grant-funding committees require lay participation ("public contributors", they're called at NIHR). While serving on such a committee would be an arduous task for most pwME, it might be an opportunity for someone either mildly affected or, better...

This really needs to be changed. Of course ME can involve pain, but it is not a "chronic pain syndrome"; very poor practice to lump them together. Perhaps something that could be flagged up with the charities that interact with the DWP?

What frustrates me the most about all of this is the knowledge of what could have been. We finally had a guideline that "both sides" were willing to sign up to; a genuine compromise. A guideline that both Jo Daniels and Willy Weir both signed off on is one hell of an achievement. No-one, and...

This is a misrepresentation - the reviews were not excluded solely because of mortality. Three Cochrane reviews were excluded from Evidence Review G on grounds that were well-explained in s1.1.3.2: The committee's further explanation, in the consultation responses, of the exclusion of the...