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Let's hope that doesn't turn out to be Walitt leading a bunch of quacks.

I agree. I was talking about least worst options not ideal options. The ideal, as far as I'm concerned, would have been to do a proper update with correct methodology which would have found exercise useless and potentially harmful for anyone with chronic fatigue, including ME/CFS. And Cochrane...

I agree, which is why I have come round to the idea that the only way forward now is to get Cochrane to see sense, withdraw the bogus 2024 version, preferably also the 2019 version too, but at least put an honest editors note on it saying it's outdated and shouldn't be used for medical care...

It goes back much further than PACE. BPS supporters have been in key positions at Cochrane from the start, as I understand it. And they determined who got to write reviews, which ones they accepted and how studies are analysed. For example, none of them seem to understand that subjective...

Maybe one day if you feel like it you could start a thread here to describe your experiences as a warning to others, or write an article and see if you could get it shared somewhere. I'm no good at suggesting where. So very true.

Magenta was on children. The Larun review explicitly says it's only about adults. Even so, I think Magenta is a valuable contribution on harms as well as ineffectiveness, and should be included.

I'm coming round to that view too. Though at the time it was set up in October 2019, we were a year away from even seeing the NICE draft review, and two years from its publication in October 2021. If Cochrane had stuck to their 2 year timetable, their new review would have come out shortly after...

I think your distressing story of the years you spent immersed in harmful quackery and the years it took to recover from the harm is really important. I went on a similar journey into quack land but I'd already been diagnosed with ME, and although I don't think I heard the term PEM back in the...

When I had mild ME/CFS I didn't consider myself disabled. Even now I much prefer saying I have a disabling illness. Of course I am disabled now, and in some contexts say so.

Ah yes I see what you mean. I assume it's referring to irritable bowel syndrome and attributing it to psychological factors, so yes, FND.

disorders of gut–brain interaction (DGBI), Defined at the start of the abstract.

The quote needs to be seen in context on the Abilify thread: https://www.s4me.info/threads/aripiprazole-abilify.16972/page-8#post-305117

I think the idea of a huge placebo effect comes from the rituximab trial, where some of the placebo group recovered, and some quack therapies like the Lightning process. I suspect a powerful placebo effect comes with all the performative and persuasive accompaniment to a clinical trial or...

Thank you, Jonathan Edwards, your rapid response is excellent. I bet Cochrane will ignore it. I hope others put additional pressure on them to explain themselves.

There is also the complication in interpreting data from an app like visible because pwME fill in their daily symptoms and severity, without necessarily attributing, for example, increased pain, to the cause, as I understand it. A lot of otherwise healthy women feel ill during their periods...

Have you been able to identify where the pressure was coming from? Was it just Larun and her boss at that stage, or had the Wessely, White, Glasziou, and other BPS crew piled in too?

I can see usefulness for severity scales as a quick way of conveying to a clinician how disabled you are, and as a way of tracking major changes in severity over time. The advantage of only needing to tick a single box on a one page document is significant for patients and can convey a lot also...

My point was more that by only raising Hilda's tragedy as a reason for delay, without mentioning that it in fact didn't delay the project and it was Cochrane's decisions that did deiay it, you leave the reader with the false conclusion that Hilda's tragedy was the major cause of delay. In fact...

Yes please, though I think the major reason given for the delay was the big reorganisation Cochrane was forced to make by cuts in funding. I don't think either Hilda's tragedy or the pandemic delayed the project significantly. It was Cochrane's decision to deprioritise the review process to the...

I quoted the bit about the earlier attempt to block the project in this post: https://www.s4me.info/threads/2025-the-2019-24-cochrane-larun-review-exercise-therapy-for-cfs-including-iag-campaign-petition-comments-and-articles.42305/page-8#post-583019