I wonder was Tony Pinching asked? He was a reasonable doctor when he worked from what I could see. However I don't recall him criticising the graded activity/exercise model and the psychobabble and psychobabblers directly even though he seemed to disagree with it/them. It was then frustrating when he complained about patients challenging experts when he wasn't willing to do it himself. He is retired now but I wonder does he have the balls, for want of a better word, to do it.
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Scientists and patient organisations call for retraction of PACE recovery paper - open letter
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Kati
Patient in training
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For those wondering why UK drs are not signing, just think about what happened to Dr Speight last year. And what happened to Dr Kerr a few years ago.
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I don't think this is enough to get PACE retracted, its only a step and more will need to be taken. Whether thats more pressure, more exposure/shaming, more science (OMF discovers pathway and proves why GET won't work and use that as a club) or the legal system.
All that said once its retracted the authors of the study should be required to repay the squandered money by garnishing all future wages and the money should be directed to the best research available (OMF)
All that said once its retracted the authors of the study should be required to repay the squandered money by garnishing all future wages and the money should be directed to the best research available (OMF)
Excuses, excuses, excuses from InActionforME
Blame others for not informing them. 5 days to get a board decision in this day in age of technology.
Doesn't matter - more and more people now know this is not a ME charity but a lobby group for insurance/psychiatrist interests.
This week an open letter, signed by a number of clinical and research professionals, and charity representatives, has been sent to the journal, Psychological Medicine. It asks the journal’s editors to retract a 2013 paper, Recovery from CFS after treatments given in the PACE trial.
Since its publication, Action for M.E. has been repeatedly asked to sign this letter, and we are pleased to make our position clear.
Any decision to support this letter would need to be taken by our Board of Trustees, and no approach was made to us in advance of the letter being published. Given that the letter has been already sent, and that getting our Board members together would take at least five working days, Action for M.E. is not in a position to sign at this point in time.
On our website, we acknowledge that scientific debate continues around the results of the PACE trial, with a number of researchers in the M.E. field and beyond questioning its findings. We also highlight that, following the release of anonymised data from the PACE trial, a December 2016 paper published in the peer-reviewed journal Fatigue: Biomedicine, Health and Behavior concluded that "the claim that patients can recover as a result of CBT and GET is not justified by the data."
https://www.actionforme.org.uk/news/letter-to-psychological-medicine-re-the-pace-trial/
Blame others for not informing them. 5 days to get a board decision in this day in age of technology.
Doesn't matter - more and more people now know this is not a ME charity but a lobby group for insurance/psychiatrist interests.
- Letter to Psychological Medicine re the PACE trial
This week an open letter, signed by a number of clinical and research professionals, and charity representatives, has been sent to the journal, Psychological Medicine. It asks the journal’s editors to retract a 2013 paper, Recovery from CFS after treatments given in the PACE trial.
Since its publication, Action for M.E. has been repeatedly asked to sign this letter, and we are pleased to make our position clear.
Any decision to support this letter would need to be taken by our Board of Trustees, and no approach was made to us in advance of the letter being published. Given that the letter has been already sent, and that getting our Board members together would take at least five working days, Action for M.E. is not in a position to sign at this point in time.
On our website, we acknowledge that scientific debate continues around the results of the PACE trial, with a number of researchers in the M.E. field and beyond questioning its findings. We also highlight that, following the release of anonymised data from the PACE trial, a December 2016 paper published in the peer-reviewed journal Fatigue: Biomedicine, Health and Behavior concluded that "the claim that patients can recover as a result of CBT and GET is not justified by the data."
https://www.actionforme.org.uk/news/letter-to-psychological-medicine-re-the-pace-trial/
This time it is completely different. The PACE fraudsters are on the backfoot now. As individual doctors they were intimated by the Wessely school and taken down one by one in the past.
More and more are speaking out and there is strength in numbers and the signatories are on the side of truth and strength.
If you know any scientists and doctors that would sign let them know.
It is the trial that is being criticised. Again there is strength in numbers and more UK doctors now need to stand up for patients, stop talking and take action and stop being so afraid.
Tom Kindlon
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BurnA
Senior Member
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You would wonder why it couldn't be emailed amongst their Board of trustees seeking approval, it's not like wet signature is going to be required.
Pathetic response. Basically:
It's too much effort to get our board of trustees to do something of value for patients, stop annoying us.
BurnA
Senior Member
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@Tom Kindlon is this something you are organising or is it being coordinated globally? Thanks for your efforts regardless.
Tom Kindlon
Senior Member
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I didn't organise the 1st round of signatories. But I happened to mention I could pass on names to the people involved when I highlighted the initial list. I then decided to highlight the request in a few more places.
The lack of legal obligation around clinical trials in general is amazing, considering that they deal with human lives and health. They're not even legally obliged to publish at all
That's a good idea. Do you think it would be good to start a fresh thread so that it gets attention?
That's a good idea. Do you think it would be good to start a fresh thread so that it gets attention?
Tom Kindlon
Senior Member
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Thank you to every signatory of this letter and all involved in making it happen. Your support and advocacy is so appreciated. It makes a difference.
The trial didn't write itself. It didn't create its methodology, or post-hoc changes to recovery criteria. It didn't spin itself in patient material or its abstract or in the media. Criticizing the PACE trial inherently involves criticizing the principal investigators who made all of those mistakes, and it's understandable that academics in the UK aren't willing to risk their financial security or their careers to get involved.
Or perhaps it is saying that they are not sure if the board of trustees would approve and so are trying to avoid the issue. They have been very slow to criticize even the most obvious failures in PACE in the past. Of course when they merge with AYME and put someone from there on the board of trustees they are even less likely to get such things through.
@Robert 1973, perfect! Did you create it? Is the original from Monty Python and the Holy Grail? Sorry, guess this question reveals a shocking lack of knowledge for people from the UK.Edit: Googled "Tis but a scratch", that answered my second question.
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Edit: Googled "Tis but a scratch", that answered my second question.
Yes, I took screenshots from YouTube. Pleased you like it. You should watch the whole film if you've not seen it.