trishrhymes
September 12, 2024 at 2:06 am
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Dear Hilda,
I don’t know whether the following is within your Talk page rules, I accept that it’s up to you whether to publish it. Your page, your rules. I hope you will see that what I am saying here needs to be said, and said publicly.
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I don’t wish to apportion blame to named individuals, since I have no knowledge of where blame lies, though clearly the editor-in-chief bears some responsibility.
I don’t want to hear more excuses about Covid, or funding cuts and reorganisation, or other priorities, I don’t want more flannel from Cochrane about new and better complaints procedures, I don’t want any more letters from Cochrane that don’t address any of our questions, I don’t want more assurances from you that you are making ‘steady progress’.
Cochrane has shown, with its actions and inactions where its priorities lie, and it’s crystal clear its priorities do not lie with scientific evidence, or the health of millions of people.
Cochrane’s priorities clearly lie with propping up failed paradigms favoured by their friends. They have known since Tom Kindlon’s publication on harms in 2010 that GET should not be recommended for ME/CFS, they have known since Kindlon and Robert Courtney pointed out flaws in the research that made it unsound that GET is not clinically useful.
They have known since Michiel Tack’s detailed analysis published on the Cochrane website in 2020 that the 2019 Larun paper should never have been published, and should be withdrawn.
The picture coming from Cochrane is of amateurish incompetence and lack of scientific understanding.
We at S4ME have tried, for over a year, and others have been trying for much longer, to make Cochrane take the problems with the Larun review seriously, supported by over 11 thousand petition signatories and over 70 organisations. People with ME/CFS and many clinicians and scientists agree that the Larun review causes harm and should be withdrawn. Cochrane editors have been given links to peer reviewed papers on harms, and large survey data, as well as some harrowing examples of harms.
Not once, in any of our correspondence with Cochrane, have they even acknowledged that they need to take harms evidence seriously, or indeed take any notice of it at all.
Cochrane is a disgrace, shaming its charitiable status, and apparently so tied in knots by its administrative processes and procedures that the editors can’t see the wood for the trees. The only alternative to that conclusion is that they have no intention of putting matters right, being in the pockets of proponents of exercise therapy, regardless of evidence.
There is no reason to keep the Larun 2019 review currently published with Cochrane’s name. Nobody with ME/CFS wants it, it helps nobody, and it is being used to perpetuate harm to who knows how many people.
I lie in bed today feeling angry and helpless, distressed beyond measure that we are so disregarded, treated as trash, unworthy of anyone’s efforts to set things right.
I don’t want your sympathy, Hilda, I want action, and I don’t mean another ‘monthly report’ telling us you are making progress in this or that small way.
I want you to contact the most senior people at Cochrane and tell them in no uncertain terms that this charade has to stop. They must withdraw the Larun review, and make a public and unreserved apology for the harm it has caused for years. And they must do so by October 2nd 2024, 5 years after they promised a new review in two years.
Will you act now? Please?
Trish Davis.
