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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Panorama used to be something of a gold standard in investigative journalism in the UK once upon a time (in my eyes anyway), and I'm hoping it might yet still prove to be so.
Trouble is it is only those in the know at the moment who can recognise the foolishness. To the innocently uninformed it still sounds highly plausible - bullsh*t baffles brains, etc.
I think this is still a bit misleading, giving a significantly inflated impression of CBT's contribution. I would have thought something along the lines of "... the recovery rate for CBT+SMC fell from 22% to just 7%. Being as SMC alone showed over 3%, CBT contributed less than 4%".
I dearly hope so, but I imagine if there is then the BBC will be putting a lot of homework into it, and ensure it is absolutely watertight and bullet proof.
(emphasis added)
This cuts to the heart of things. People only begin to understand if they, or someone close, have ME, and even then it's a fraught learning curve. Getting "non-ME" people understand, let alone care, is a huge challenge. Maybe exposing a major miscarriage of medical justice might be a start, so long as it is in terms normal non-ME people can identify with. Or at least if it triggers subsequent more digestible articles.But, when talking about what the gov has/not done we need to give people a reason to care. ME is so mis-understood, Why should people care? Isn't it just that illness that people are tired all time?
It’s been a wild 72 hours. Publication of the special issue of Journal of Health Psychology is going forward as planned on Monday. PLOS Mind the Brain is dead, long live Mind the Brain.
My colleagues and I came under heavy attack on two fronts.
There was a last ditch attempt to block publication of the special issue by a powerful but unknown #PACEtrial advocate and it was finally foiled this morning. A weaselly coward suggested papers weren't properly peer reviewed and that the special issue should therefore be published. That of course was nonsense. There were some threats made to Sage Press, the publisher of Journal of Health Psychology, which expressed a reluctance to go forward as planned. As these things are done, we weren’t told the identity of the complainant, but it was clear that whoever s/he was a huge quite powerful
A decision was made that I would take responsibility for unilaterally breaking the embargo on the press release and post a blog about it. If necessary, I would explain that I did it without permission.
I prepared the blog, but waited till 7 AM in hope that Sage would relent. They had not by that hour, and so I posted the blog. The strategy was that we would get very visible and create a great deal of embarrassment for Sage if they did not let us go forward. Actually, all of the papers were available Early Release except Editor David Marks’ great accompanying introductory editorial. We were prepared to move that to a public repository, and if necessary the other articles from the special issue. A few hours later, Sage agreed to go forward and published the special issue on Monday morning.
On another front, PLOS blog Mind the Brain died in a struggle, with me being blocked from uploading any further posts. Some of us have been agitating for PLOS to lift the ban on me speaking in the blog about the PACE trial controversy.
A conference call had been scheduled for Friday morning, but it simply became an announcement that the blog was being shut down because PLOS did not have sufficient staff to fact check my posts in a timely fashion. PLOS management asked that we issue a joint statement in social media about amicable separation, with us praising five years of working together.
I refused and I indicated that PLOS was caving to the PACE investigators by not retracting the paper for which data had been promised to be release, but was not. PLOS indicated they had done all they could with the Expression of Concern.
I disagreed, and I said they had a public relations disaster on their hands. We arrived at a decision that early next week, the dead PLOS blog Mind the Brain would be revived on CoyneoftheRealm.com free of any censorship and control of my talking about the PACE controversy. A zip folder of the past five years of post would be transferred on Tuesday. I am telling of these events on Facebook here, but I’m can refrain from talking on Twitter until what PLOS comes up with. PLOS had explained, that the decision had nothing to do with my pressuring them to lift the censorship about PACE, but only that my muckraking about conflicts of interest of institutions and individuals had caused alarm. I challenge them to indicate any factually untrue statements that I had made, and they said they could not.
I strongly believe that someone was pulling the strings and the huge PLOS organization had become risk adverse after long months of negotiation with the PACE investigators. I’m free to say more about this once the separation has been arranged.
