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

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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