I have just spotted that the Editorial note attached to the 2024 version of the Larun review has been edited today. Luckily I kept a copy of the previous version, so I'll post them both here and show the change in red
Editorial note (19 December 2024):
Larun L, Brurberg KG, Odgaard‐Jensen J...
A huge thank you to him for the article. He has really shown up well just how badly Cochrane have behaved, with more care for themselves than for those they purport to serve.
I get it sometimes still (age 75). Worst instance recently on trying a newly prescribed medication that set of bad restless legs lasting 8 hours.
My mother who didn't have ME/CFS had it quite badly.
I think this section is key - following the masks controversy where the editor had to make a public apology:
"According to people involved, it created a certain amount of conflict fatigue.
"A foreseeable, yet again fierce, further conflict over a new ME/CFS review did not seem very attractive...
I think that's an example where the target group has been excluded, so nothing can be deduced about them.
How about if there is a mix of humans, apes, mice, camels and dolphins?
Edit: I haven't been able to read all the discussion.
The PACE trial used the Oxford criteria for CFS, which only requires chronic disabling fatigue, and explicitly includes post viral fatigue, fatigue accompanied (or caused) by mild to moderate anxiety and/or depression, and idiopathic chronic...
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the bogus 2024 version, preferably also the 2019 version too, but at least put an honest editors note on it saying it's outdated and shouldn't be used for medical care...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.
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