'One Of Us Cannot Be Wrong' is, of course, one of Leonard Cohen's (many) fabulous songs. I've had it in my head since The Lancet published its editorial the other day on the hugely negative patient response to the PACE trial:
...But one cannot help but wonder whether the sheer anger and coordination of the response to this trial has been born not only from the frustration many feel about a disabling condition, but also from an active campaign to discredit the research...
Oh for Jesus' sake, patronise and demonise us some more, why don't you?!
The Lancet received forty-four letters of complaint and published eight. It did not publish any from patient charities. Here once again are the ones rejected.
Dr Speedy, as always, has a wonderful take on things.
So it goes on, a handful of (biopsychosocial) researchers v. patients worldwide disagreeing passionately on the safety and efficacy of graded exercise and CBT for a neuroimmune illness that has torn up many of their lives.
As Leonard says: One Of Us Cannot Be Wrong.
***Cheney P, Orlando Workshop, International Congress of Bioenergetic Medicine 1999, audio tape #2 (“The most important thing about exercise is not to have them do aerobic exercise. If you have a defect in the mitochondrial function and you push the mitochondria by exercise, you kill the DNA”).
******If you are on FACEBOOK, please take a few minutes to vote for Whittemore Peterson Institute, it desperately needs funding. Nicky has clear instructions on her blog! Many, many thanks. The PACE trial wasted almost £5 million pounds on psychobabble, just think what biomedical gems that money could have unearthed.
**********Oh, it just gets better and better. I had wanted this to be a short post, I am so fucking exhausted with PACE and its fallout. Now we have them telling Professor Hooper that the trial was never about ME but about the much more nebulous 'chronic fatigue'.
Really, these PACE people should come up to Edinburgh and get a slot in the Fringe comedy circuit this August: the blackest medical comedy ever written and performed!
************** Countess of Mar wins award for outstanding services to PWME
...But one cannot help but wonder whether the sheer anger and coordination of the response to this trial has been born not only from the frustration many feel about a disabling condition, but also from an active campaign to discredit the research...
Oh for Jesus' sake, patronise and demonise us some more, why don't you?!
The Lancet received forty-four letters of complaint and published eight. It did not publish any from patient charities. Here once again are the ones rejected.
Dr Speedy, as always, has a wonderful take on things.
So it goes on, a handful of (biopsychosocial) researchers v. patients worldwide disagreeing passionately on the safety and efficacy of graded exercise and CBT for a neuroimmune illness that has torn up many of their lives.
As Leonard says: One Of Us Cannot Be Wrong.
***Cheney P, Orlando Workshop, International Congress of Bioenergetic Medicine 1999, audio tape #2 (“The most important thing about exercise is not to have them do aerobic exercise. If you have a defect in the mitochondrial function and you push the mitochondria by exercise, you kill the DNA”).
******If you are on FACEBOOK, please take a few minutes to vote for Whittemore Peterson Institute, it desperately needs funding. Nicky has clear instructions on her blog! Many, many thanks. The PACE trial wasted almost £5 million pounds on psychobabble, just think what biomedical gems that money could have unearthed.
**********Oh, it just gets better and better. I had wanted this to be a short post, I am so fucking exhausted with PACE and its fallout. Now we have them telling Professor Hooper that the trial was never about ME but about the much more nebulous 'chronic fatigue'.
Really, these PACE people should come up to Edinburgh and get a slot in the Fringe comedy circuit this August: the blackest medical comedy ever written and performed!
************** Countess of Mar wins award for outstanding services to PWME
