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The bit I have read has actually been pretty good, aside from a belief that CBT has a material impact on the disease itself. The conclusion in the abstract isn't bad. Here's some commentary on some of those sweet secondary benefits of ME/CFS:

Article about the findings Blue Light May Not Be Keeping You Awake After All A new study shows that the brightness of light matters more than its color. KEY POINTS Researchers exposed healthy subjects to blue, yellow, and white light for an hour before bed. The color of light made no...

https://www.nature.com/articles/s41562-023-01791-7 Abstract Evening exposure to short-wavelength light can affect the circadian clock, sleep and alertness. Intrinsically photosensitive retinal ganglion cells expressing melanopsin are thought to be the primary drivers of these effects. Whether...

A couple of days ago I heard on the radio someone promoting their book about how exercise was the solution to Long Concussion. Graded exercise and graded cognitive effort. Pushing through symptoms to get to recovery. Increased symptoms were ok and even desirable up to a two points on a 1 to...

I was wondering how on earth stupid conclusions like the one I discussed above get through peer review and the journal editorial controls and thought 'maybe it was published in one of those low quality journals'. But no, it was Nature...

A great example of mixing up cause and association. Almost certainly, vaccination did not protect against schizophrenia and bipolar disorders, but rather people developing either of those two very disabling conditions were more likely to live lives that made getting a vaccination much more...

The problem is of course that 'I asked some people hanging out on the internet and this is what they told me' doesn't sound great in a PhD writeup. Even though the standard approach of 'I had conversations with a small number of people selected and self-selected with considerable bias and then...

I think the core research being proposed here is useful. If the recruitment is done well and honestly, and there really is the option to not provide one's DNA and data for other studies, then I think it could be fine. It would be a shame to torpedo the study if both the intent and the practice...

I really like ME/CFS Skeptic's draft. Some comments that came to mind: The UK National Institute for Health and Care Excellence (add UK; singular institute so no 's'; for Health, not of Health) I don't think it is true that it actively recommends against other exercise programs, it's just that...

For more discussion of Esther Crawley's possible retirement, see here: Esther Crawley

crossposted with Yann The PROMs don't look too bad. But I question why it is necessary to collect anxiety and depression data with specific tools (47 items for children) for a study attempting to find a disease with a genetic biomarker. Why not just include anxiety and depression as line items...

Information from the Trial registry Study type: screening Current interventions All data will be collected via REDCap, which is an online secure and safe platform. Participants will complete online forms to provide the following: 1. Consent to the study 2. Personal details such as gender and...

Yes, if Crawley is not involved, that makes me feel better about this. But, prospective participants need to be aware that, if they agree, their DNA/DNA information, medical records and answers to the questionnaires are being stored, and they have no control over who has access to that...

https://www.researchgate.net/profile/Esther-Crawley Publications 2023 to the present: Graded exercise therapy compared to activity management for paediatric chronic fatigue syndrome/myalgic encephalomyelitis: pragmatic randomized controlled trial 2024 (the exercise therapy was found to not be...

Could it be true, that Professor Esther Crawley has retired?

Welcome to the forum Ellen, and thanks very much for your interest in the experiences of young people with ME/CFS. Can you tell us, how did you come to choose your research project? How big a project is it - is it just a part of your PhD work or is it the main focus? How many people are you...

Looks as if they get your medical records as well as genetic data and the 20 minutes of questionnaires. It might all be legitimate, but it's just that Crawley was such a key part of MEGA. I wonder if all the medical records and questionnaire data goes along with the DNA into the Bristol data...

"Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date. The recruitment start and end dates are as follows: 01 Sep 202230 Sep 2024 Participants are asked to complete one questionnaire and provide a saliva sample via...