http://www.virology.ws/2018/10/23/a-statement-in-support-of-cochrane/ A letter signed by 40+ academics in support of Cochrane decision to withdraw the review of exercise for ME
Oh, WOW! Having a high pain day and a bit emotional - this got me right in the feels. Thank you so much, David - and all the signatories! You know exactly how much this means for us
Great to have over forty good signatories when this must have been pulled together really quick. Thanks so much to the signatories, and of course to Tuller too.
Thank you very much David, and all the signatories for your quick, clear, and thorough action on this communication. Perhaps your letter will also serve to convince other authorities that the studies promoting GET for ME are fraught with methodological errors, and misconceptions about a very serious neuroimmune disease. Thank you very much to all who signed, and thank you again, David for your wonderful help for our community!
Those desperate anti science patient activists that are bullying the poor BPS researchers, they even managed to disguise themselves as respected PhDs and Proffessors at major academic institutes. The lengths they will go to, concealing their major disabling illness, studying and researching for twenty, thirty, forty years or more, infiltrating medicine and academia just because they fear the stigma of a psychiatric diagnosis. The paranoia of people with chronic fatigue is such that they started planning this major international undercover operation over thirty years before the publication of PACE and the Cochrane Reviews of GET and CBT with the deliberate intent of libelling and bullying their authors. Thank goodness we have people like Prof Blakemoor and such as the SMC that can see through their evil anti science machinations. Well done to Reuters for coming to the defence of the BPS martyrs and exposing this evil plot where millions of dollars of research funding has been syphoned off into thousands of biomedical research studies designed with the sole purpose of undermining these true believers. [Added - Fortunately our heroes of true science have built impenetrable defences around their minds by refusing to read any of this devilish research and steadfastly declining to engage with these diabolically beguiling criticisms designed to distract them from the true path. We must stand firm, given the incredibly hard work that great luminaries like Wessley, White, Crawford and here Larun have undertaken to avoid the obvious superficial conclusions of null results or experimenter bias or even adverse reactions, to ensure the data collected reveals the deeper truth.]
"True believers" - put up the tent, get out the tambourines, praise the great, and all powerful BPS! Bring on that revival meeting! Great comments, Peter!
I did look at the Reuters site to try to post it under the article with my heartfelt thanks to Larun for preempting her discussions with Cochrane and leaking this travesty to the press and to Kat Kelland for taking her points at face value despite Cochrane's unreasonable contrary assertion and getting independent corroboration from Prof Blakemore who knows so much about this through his senior role at the MRC that funded a number of these inspiring studies including the incomparable PACE, but there wasn't a comments facility. I ground to a halt at that point, but will look for email addresses later. Also Reuters should be warned of some of those sneaky peer reviewed articles like Vink's that try to undermine Larun's glorious endeavour by their superficially convincing and diabolically attractive criticism.
It made me quite emotional too All those years of being abandoned and now there are people willing to stand beside us.
Great job, @dave30th! Very grateful to you and to everybody involved. It's very easy to forget that just three years ago, patients were alone in raising these issues, no one in authority would listen, and we couldn't understand why doctors and researchers wouldn't speak out and help us. We felt completely abandoned by those whose job it is to push for good science. Your coming on the scene and organising these open letters has completely changed that. I can't tell you how grateful I am.
Thanks, Sasha. This has been an incredibly rewarding project for me and I'm glad it seems to be finally working to shake things up.
Reading the comments here I think reading this will call for a bit of preparation. Fresh pot of coffee, some chocolate, an extra pillow, maybe a small but colorful party hat?
I'm proud and happy to have donated to your crowdfund and you're exceeding my high expectations of what you would be doing. You're making a huge difference - thank you again!
Thank you so much David! Further to Sasha's comment, I don't know why regulatory bodies tell patients they can lodge complaints against professionals. We have seen in the PACE instance and others, that constructive action only happens when other professionals take exception to those who cause harm under the guise of degrees, and awards. Patients seem to always be in a one down classification. This also seems to apply to physicians who become patients. Patients, regardless of socioeconomic status are often viewed as unreliable sources of information by the medical establishment. We could say being a patient is stigmatizing. And, even more so with the BPS crowd equating ME patients with some sort of dangerous, hysterical radicals.
I sent it yesterday. No reply. Still trying to find the energy to finish my letter to her editors. I will include that I requested evidence for the allegations and the fact that she did not respond to a simple request on information that should be readily available since she surely would have had to fact-check the claims before publication.
Moderator note: Discussion of the latest developments on this Cochrane review continue on this thread: Cochrane Review: Exercise therapy for chronic fatigue syndrome - recent developments, 2018-19