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Crawley is using the 6 month FITNET results to justify those figures, though that trial's result were unusual, and showed no significant difference between groups at long-term follow up.

I think that there are legitimate reasons for people to be concerned about how the narrative around Jen's health is presented, given her role with ME Action, the danger of the media (and patients, friends, families) reading too much into anecdotes and the love of recovery stories (there have...

Thanks for all your work on this. It sounds as if it possibly would have been useful to have more people raising concerns (their N=8 point)? Maybe something for next time.

Looks like they've been beating this drum for a while: https://www.prnewswire.com/news/national-cfids-foundation

Me too, and I think Myhill is really unhelpful, misguided and likely to make things worse when she involves herself with PACE advocacy.

There seems to be a lot of variety amongst the symptoms and experiences of patients classed as having ME/CFS. I'm not sure anyone knows what 'typical' ME is right now.

Searching for news on this I then found: https://www.downtoearth.org.in/news/health/health-is-about-public-leadership-who-chief-64649 Horton just says the things it would be impressive to believe, but then fails to back them up. Who could be stupid enough to be impressed by him?

Great to hear that she's feeling so much better. Fingers crossed for her (and Omar) that it will last (and improve too, as she continues to get over her surgery). I'm always wary of reading too much into anecdotes, and especially with a 'public' patient like Jen there is a danger of one...

Thanks. For those not wanting to read the blog, this is probably a handy summary:

Worth avoiding making assumptions like that! https://sciencebasedmedicine.org/treating-chronic-fatigue-syndrome-with-cognitive-behavioral-therapy-and-graded-exercise-therapy-how-the-pace-trial-got-it-wrong/

Any specifics?

There's this from Helland: https://translate.google.com/translate?hl=en&sl=no&u=https://www.dagensmedisin.no/artikler/2017/09/21/-dette-er-veldig-spennende-resultater/&prev=search Presumably Vogt's been promoting LP with anecdotes somewhere?

I think that they know exactly what they're doing with that language: "To be clear the change was before the analysis. It's on page 2228." Of course the criteria was devised before the analysis using the criteria. That doesn't mean it was devised before other analyses using the same data...

This post and the following ones have been moved from this thread. I was just looking at this new paper from the author: Measurements of Recovery and Predictors of Outcome in an Untreated Chronic Fatigue Syndrome Sample...

Yeah, I assumed that, but can see how my reply might have been misleading. It's jut that I have seen arguments like that used to try to defend the PACE recovery paper so just wanted to explain why I thought it was a weak argument in relation to PACE, partly in case others thought it might apply...

As a general point, that's a reasonable one. But the specific problems with the way recovery was redefined in PACE mean that this point offers no real defence to the researchers imo. They made provably false (and still uncorrected) claims in their recovery paper to try to justify their post-hoc...

I think it's best to start from specific quotes as Wessely will often carefully phrase his claims with provisos with 'may', 'for some people', etc (ignoring the fact that he doesn't say it's 'all in the head'). Whenever patients make complaints about Wessely that ignore his precise phrasing then...

That ME quote was about the diagnosis of ME, not about the symptoms of ME. He didn't say anything like that and it's really important that people realise this. Any sort of unfair criticism is bad. I stated a thread about Wessely and 'all in the mind' on PR in 2012...

Tweet deleted... booo! What a surprise that he doesn't want to encourage people to see what real patients are saying about his work.

Truth, accountability, and reconciliation?