PACE Trial : Guardian Post
I have just posted this on the Guardian :
The PACE Trial was anything but "scientific" :
It used the Oxford criteria which do not define patients with ME/CFS. If used correctly, they exclude people with neurological disorders yet ME is a classified neurological disorder .
It excluded children and those who are severely affected. The results of any trial that excluded those who are severely affected cannot be taken seriously.
I t used no objective measures of outcome (ie. actigraphy) to show improvement or non-improvement and relied upon participants’ subjective answers to questionnaires. This is an unscientific way to gather evidence.
The Principal Investigators all have financial links with the health insurance industry,
( cf . Professor Malcolm Hooper response to the MRC PACE Trial
http://carersfight.blogspot.com/2011/02/professor-hooper-response-to-mrc-pace.html)
My wife's has been forced to live in all-over screaming, throbbing physical agony, for the last 18 years with Very Severe ME., because of the influence of the very same psychiatrists, who conducted the PACE Trial.
These psychiatrists, who exercise an extraordinary influence upon Government policy - only psychiatric approaches to ME have been funded by the MRC, have effectively condemned my wife to a life of absolute torment, all these years without treatment or any hope of a cure.
This small school of UK psychiatrists, who simply ignore the 5000 published biomedical papers on ME , continue to promote the ludicrous suggestion that a serious neurological disease like ME, can be cured through changing your thoughts and by exercise.
( It is only a matter of time, under the Coalitions plans for "reform" of DLA, that the mantra of CBT ,as a cure-all, is extended across the whole of disability.)
Research , conducted by patient groups, and the published medical evidence consistently shows that CBT and GET make people with Severe ME much, much worse. We personally know of friends who have been tipped from moderate ME into atrocious illness , into their lives being wrecked for decades.
This PACE Trial scandal has nothing to do with genuine neurological ME but everything to do with the desire of vested interests to suppress the biomedical truth of ME, because of the financial implications of a disease estimated to be five bigger than AIDS.
The PACE Trial was anything but "scientific" :
It used the Oxford criteria which do not define patients with ME/CFS. If used correctly, they exclude people with neurological disorders yet ME is a classified neurological disorder .
It excluded children and those who are severely affected. The results of any trial that excluded those who are severely affected cannot be taken seriously.
I t used no objective measures of outcome (ie. actigraphy) to show improvement or non-improvement and relied upon participants’ subjective answers to questionnaires. This is an unscientific way to gather evidence.
The Principal Investigators all have financial links with the health insurance industry,
( cf . Professor Malcolm Hooper response to the MRC PACE Trial
http://carersfight.blogspot.com/2011/02/professor-hooper-response-to-mrc-pace.html)
My wife's has been forced to live in all-over screaming, throbbing physical agony, for the last 18 years with Very Severe ME., because of the influence of the very same psychiatrists, who conducted the PACE Trial.
These psychiatrists, who exercise an extraordinary influence upon Government policy - only psychiatric approaches to ME have been funded by the MRC, have effectively condemned my wife to a life of absolute torment, all these years without treatment or any hope of a cure.
This small school of UK psychiatrists, who simply ignore the 5000 published biomedical papers on ME , continue to promote the ludicrous suggestion that a serious neurological disease like ME, can be cured through changing your thoughts and by exercise.
( It is only a matter of time, under the Coalitions plans for "reform" of DLA, that the mantra of CBT ,as a cure-all, is extended across the whole of disability.)
Research , conducted by patient groups, and the published medical evidence consistently shows that CBT and GET make people with Severe ME much, much worse. We personally know of friends who have been tipped from moderate ME into atrocious illness , into their lives being wrecked for decades.
This PACE Trial scandal has nothing to do with genuine neurological ME but everything to do with the desire of vested interests to suppress the biomedical truth of ME, because of the financial implications of a disease estimated to be five bigger than AIDS.
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