Stonebird Statement on the PACE Trial Controversy
integrity of science. Sadly, it is psychiatry that has worked for more than three decades to deny the physical existence of ME, by hiding it in a poorly defined cohort of patients,with a very wide ranging definition of fatigue.
It is psychiatry, that , without a credible shred of evidence, has aggressively sought to have people with ME, a WHO defined Neurological Disease, classified as mentally ill, victims of misguided thinking or hysteria and misdirected the focus away from the most serious and disabling symptoms, towards a generalised fatigue focus.
It is psychiatry that has forcibly removed patients, against their will from their homes and consigned them to psychiatric institutions, with tragic and even fatal consequences.
It is psychiatry that has encouraged the proscription of tests that might help identify physical illness.
It is, then, imperative, for the ME Community, that the authors of the highly influential PACE Trail explain themselves and are held to account, if, as seems likely, their science is seriously flawed. This should, then, rightly, have major implications for the healthcare of thousands.
Only then will there be any hope that the dreadful 'psychosocial cloud' that has hung over people with ME and dominated UK healthcare policy, with ineffective 'management' regimes, will finally lift and end the denial of seriously physically ill patients, often house and bed bound, undergoing tremendous physical suffering and experiencing complex multi- system dysfunction, with little to no clinical understanding, investigation, treatment or hope.
Maybe then a new dawn can begin, where the respect, investigation and treatment they so desperately need might become possible and a genuine biomedical integrated response might develop within accessible healthcare systems.
Stonebird references :
The Five Myths that underpin official UK ME policy
The Great UK PACE Trial Scandal
When I am 64 and other false positives : The PACE Trial.
101 Good Reasons :
Why it is wrong to provide CBT and GET to ME Patients.