Astrocyte wrote:
PACE has done us all a favour. Just one week after its publication 1.5 million quid has been ring-fenced for bio research by the PACE funders. That says a huge amount.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
What it says is that in all its existence the MRC has refused to fund relevant bioresearch on Myalgic Encephalomyelitis but has had endless funds for CBT/GET studies on patient cohorts defined by fatigue of 6 months (with emphasis on illness beliefs).
The eventual MRC 1.5 million has nothing to do with the PACE Trial. What on earth gave you the impression that it did?
Astrocyte: Pace has done us all a favour ?????
No favours whatsoever from PACE, Astrocyte.
PACE wasted years of our lives, squandered 5 million of taxpayers money, was part funded by the DWP (DWP involvement was suggested by the Medical officer for the Benefits agencies at the time, ie Prof Mansel Aylward of UNUM, Peter Whites buddy.)
There are threads here that fully analyse and deconstruct the rubbish methodology of PACE. And the near hysterical media misreporting of the PACE results did us great favours too, obviously:
Got ME? Just get out and exersise, scientists say
http://www.independent.co.uk/life-s...-out-and-exercise-say-scientists-2218377.html
Dr Maurice Murphy has been running a 'CFS' diagnosis factory at Barts for years, doling out diagnoses of mild CFS with sleep problems to patients who have severe ME and a myriad of painful and disabling symptoms. Severely sick patients with neuro disabilities were dumped by Barts and no, didnt receive back up for desperately needed legitimate benefits, despite asking Barts doctors, who never responded.
Barts is one of the epicentres for a wasteful and cruel policy that has caused widespread deprivation and suffering, for years.
Do you really think that just one or two patients had bad experiences at Barts?
Peter White put up a big argument against the use of the Canadian Consensus Criteria he says that the CCC diagnostic criteria would include too many patients with primary psychiatric conditions (!?). His fellow psychiatrists swallowed that one at their CFS conference a couple of years ago.
Astrocyte, your relentless rose colored positive spin on Barts, Peter White and PACE just doesnt ring true. The informed majority dont agree with you.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Paternal Preaching to informed adults is really not appropriate either. You come close to suggesting that its unreasonable patients who have been the obstacle all these years.
The obstacle all these years, my friend, is Peter White and his psychiatrist friends who have guzzled the research funds and misinformed both health professionals, media and public about our disease.