Professor Simon Wessely, psychiatrist:
"What the patient doesn't know won't hurt."
UNUM Insurance, Chief Medical Officer's Report 2007
This document is a discussion of the outcome of the PACE trials which coincide with a shake-up of the UK state benefit systems. The latter involves a move towards a 'comply or be sanctioned' culture. Strategies for differentiating yourself from the PACE trial patients and for holding on to state benefits are discussed. Key to success is having the strong financial support from ME/CFS charities to fund individual biomedical testing for patients. The flaws and weaknesses of the biopsychosocial model and the increasingly nebulous definitions that identify CFS patients as having only 'subjective fatigue', psychological in origin, can be exposed with thorough biomedical testing. Start lobbying your charities to pay for it now or face being characterised as having a Functional Somatic Syndrome and your resources cut off indefinitely. How PACE was allowed to come to fruition in this manner is a travesty. Patients have fought for over 50 years to get proper reco gnition for their illness, and several thousand research papers elucidating many of the biomedical factors behind their symptoms have been published. So why were they not taken seriously, and who failed to fight their corner? Could it be the ME/CFS charities who insisted that patients did not need any more than a set of standard blood tests (in line with Wessely School dogma); who seem content to broaden the definition of ME/CFS to include patients with no evidence of inflammation of the brain or spinal cord? The same charities who did not give their wholehearted support to the Canadian Criteria; which, while not perfect, at least recognised the neurological and other biomedical factors central to ME/CFS. And even now, what are the charities really doing about the mess that is the PACE trial publication? Very little seems to be the answer, and for that reason patients must now look to themselves, and each other to limit the damage.
Lara, Health Advocate
* The PACE Report - The MRC/PACE Trial Scandal
Jane Bryant, The One Click Group