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https://twitter.com/davidtuller1/status/1475597861437915137 PubPeer link: https://t.co/HtczbYSM2J Thank you @dave30th @Brian Hughes @PeterW Forum thread about PubPeer here.

Yes, unfortunately sounds more like a business model than genuine advocacy for patients. Quick google search: #Diana & Alex Klurfeld Ask How COVID-19 Affects Those with Ehlers Danlos? | The Hudson Weekly, August 31, 2021...

Should we start a new thread on changes, not only regarding actual encounters with health care practitioners but also changes to the better on website content? I'm on occasionally-lurking modus currently but spotted at least that one: (A Pilates-for-CFS video taken down from the NHS UK website.)

I'm late but didn't want to miss to say big thanks to the EMEC and especially Evelien for another excellent presentation before the European Commission. Well done! I hope the payback on Evelien's health wasn't too high. Best wishes to her and everyone involved.

Wilshire, Carolyn & Ward, Tony. (2015). Psychogenic explanations of physical illness: Time to examine the evidence. Perspectives on Psychological Science 2016, Vol. 11(5) 606–631. https://pubmed.ncbi.nlm.nih.gov/27694458/ (paywalled) Abstract In some patients with chronic physical...

This is a letter that is fully available as response to the BMJ news article 'NICE understates role of exercise and CBT in managing ME/CFS, say medical leaders': https://www.bmj.com/content/375/bmj.n2647/rr-2 Authors: Stuart I Brown Researcher (Retired)# Nina Muirhead #MEAction Scotland...

Haven't read yet, but this one could get very close: Spotlight on Cochrane’s Sustainable Healthcare Field: An interview with Minna Johansson https://www.cochrane.org/news/spotlight-cochranes-sustainable-healthcare-field-interview-minna-johansson About Minna Johansson:

Do we need to start an 'Oh the Irony' meta-thread?

Cochrane Sustainable Healthcare joins forces with the BMJ to explore new ways to make health systems healthier New podcast series looks at initiatives to wind back the medical excess that is causing harm to people and the planet. Cochrane Sustainable Healthcare has joined forces with the BMJ...

I share the concerns about what is viewed as qualification to be in the writing team. Thank you also for highlighting the co-authorship of PACE investigator Peter White and Colonel John Etherington ina recent paper. I still think we should be very cautious in drawing conclusion about potential...

This consensus statement was developed by an expert panel in the fields of rehabilitation, sport and exercise medicine (SEM), rheumatology, psychiatry, general practice, psychology and specialist pain, working at the Defence Medical Rehabilitation Centre, Stanford Hall, UK.

https://twitter.com/AlanCarson15/status/1466461909855703043 It seems @Brian Hughes' Twitter thread needs to be shared more widely. https://twitter.com/b_m_hughes/status/1466079439503167492

Interesting conversation about feedback, too: "There needs to be a better mechanism to provide feedback. Many of us fantasize abt telling former docs what they missed (I’m being generous) & while I’d never trust them again myself, I’d rather they don’t do the same to another patient. I haven’t...

Seems to match. Research summary "Chronic fatigue syndrome (CFS) is a common and debilitating condition whose causation is not well understood. Many of the symptoms of CFS suggest an underlying brain dysfunction. In a previous study using magnetic resonance spectroscopy (MRS) we identified a...

Wikipedia page on the author: https://en.wikipedia.org/wiki/Maryanne_Demasi (Just meant as a reminder to be cautious with sources -- even if some of the author's investigation and criticism might be valid, the overall claims or interpretation might be not.)

Another point I'm thinking about is how to make sure that trial participants report objective outcomes in a reliable way if they can't be collected otherwise than by self-report. I think the risk of bias in reporting employment status is very low as this nowadays won't fluctuate much short...

Apologies for only guessing -- I still lack some basic understanding of statistics and trial methodology. I think return to work and school attendance are still meaningful outcomes for a large group of PWME. I just wanted to suggest that, in unblinded trials, they shouldn't be the only...

Nut sure whether relevant, but I thought it's interesting that until the year 2015, both Lynne Turner-Stoke and Dereck T Wade were also Cochrane authors. And there are these papers co-authored by Dereck T Wade and/or Lynne Turner-Stoke: Wade DT, Halligan PW. The biopsychosocial model of...

At another quick glance, the reasonable points were made on a background that is rather 'mixed': Per se that is certainly right. I don't get from their paper why they highlight this is in their criticism of the NICE guideline, but it seems that they want to make a point about taking patients...

Thanks for the excerpts, @Hutan . I didn't check the references but at a quick glance, Eccleston and Williams seem to have some reasonable points? - "Self-report of pain is the gold standard; observers consistently underestimate pain compared with patients.[8] The implication that patients...