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Yes, but what is planned and what is reported are both not necessarily what actually happened in every instance. And it's difficult to standardise effective encouragement - disinterested encouragement that is delivered according to a schedule in a flat fashion, or ambivalent encouragement when...

For those interested in the questions @Snowdrop poses - 'What is going on and how is it getting done in the NIHR?', we have this thread: Transparency, the MRC and NIHR (UK) I think it's important that funders of the continuous stream of rubbish research from BPS proponents are challenged on...

No objective outcomes for their planned 'definitive RCT'. The study result is in safe hands.

Yes, and the issue of the six-minute walking test being only partially an objective test. There's plenty of scope for making an extra effort, or not.

Every time I see something new from Crawley, I think 'please, please, (Crawley) just go away'. I don't think the lack of a well developed PROM is the main barrier to improving treatment. If Crawley really wants to improve treatment of young people with ME/CFS, a useful thing she could do would...

Yes, the pre-test level of fatigue is an important thing to think about. Unfortunately, I don't think many researchers have thought about it enough. The reality of trials with respect to controlling confounding variables is, I think, often quite different to what we might hope for. Before...

Was anyone else struck by how similar his video appeared to @Adam pwme's videos in the opening sequences? The music, the text, the clip of someone talking. The similarity broke down really quickly of course, because whereas Adam was able to use a whole range of experts to make points, in...

I wonder if it ever crossed his mind that, if he stuck to evidence rather than flights of fancy, he could, as an Infectious Diseases doctor have said 'post-viral fatigue syndrome following a viral infection is common. Most people will recover spontaneously in 6 months, and nearly everyone will...

The International Consensus Criteria? I think Chapter 2, which describes MUS and ME/CFS could use some editing. It gets tangled up in whether ME and CFS are different, and the details of the criteria. I don't think a lot of the information is really needed to address the topic indicated in...

I should add that I appreciate David Marks' contribution to the challenging of PACE and MUS in general. And his effort in putting this document together - I am sure it will make a difference. Although this sentence about the prevalence of MUS is true (ie one source does give that estimate), I...

Actually Ron Davis is chair of OMF's Scientific Advisory Board, which is different to chairing OMF. wholistic > holistic Some particularly nice bits (I'm not very far into it yet) Interesting use of the 'Wessely School' - perhaps that is a good term to use as we consider his legacy.

Here one thread talking about it: Psychology & Health: Perfectionism and beliefs about emotions in adolescents with chronic fatigue syndrome and their parents (2019) Chalder et al. The Child and Adolescent Perfectionism Scale (Flett et al., 2016) is a 22-item scale, which measures two factors...

This from another paper on perfectionism in ME/CFS: They group the questions that are supposed to identify perfectionism into little categories to create more opportunities for finding something that is different in people with ME/CFS. In that quote that I've given, they have taken the reaching...

An Australian paper. Authors: Chansavath Phetsouphanh 1*&, David Darley 2*, Anette Howe 1, C. Mee Ling Munier 1, Sheila K Patel 3, Jenifer A Juno 4, Louise M Burrell 3, Stephen J Kent 4,5, Gregory J Dore 1,2, Anthony D Kelleher 1,2†& and Gail Matthews 1,2†& The Kirby institute...

Are you perhaps thinking of the target training heart rate that Workwell suggest people with ME/CFS routinely keep their heart rate under, so as to avoid PEM? I don't think I've seen any good evidence yet for the idea that keeping your heart rate below a percentage, e.g. 60% of maximum heart...

Interesting paper from a couple of researchers from the Laboratory of Cellular Oncology, National Cancer Institute, NIH, Bethesda. I've copied the bits I found most interesting and understandable (which was not the methodology). It sounds like substantial advances are being made in techniques...

It's an interesting question as to whether 100% of people with ME/CFS show the drop in performance at VT. We don't know if a person with ME/CFS could show that drop in a paired CPET, but another week, perhaps when well rested, not show that drop. Or if some people need to do more than 8...

There's been a shift over time, away from 'people with CFS are all perfectionists' and even 'people with CFS all have perfectionist mothers' to 'people with CFS who are perfectionists are sicker and more depressed than those who aren't'. I guess that's a result of studies finding, despite the...

It could be, as in my case I think, that the researchers applied a significant amount of caution with people with ME/CFS and/or were happy when data supportive of their hypothesis was achieved, and stopped ME/CFS participants when they got to RER=1.1, rather than letting them continue on for a...

On that thread, @wdb mentions a study that had people with ME/CFS and controls do paired CPETS (Lien et al, 2019) Abnormal blood lactate accumulation during repeated exercise testing in myalgic encephalomyelitis/chronic fatigue syndrome The chart below is comparable to the ones from the Van...