----- Original Message -----
From: Susanna Agardy
To: Chris Clark, AfME CEO chris@afme.org.uk
Sent: Tuesday, January 17, 2006 6:12 PM
Subject: Fw: AfME/MRC Research Summit
Dear Mr Clark,
I see that you will be attending the above Research Summit on CFS/ME. As you are a representative of CFS /ME patients and I expect that you will be attending in that capacity I ask that you raise some issues on our behalf. These are issues that affect CFS/ME people all over the world.
It appears that the Summit will be dominated by psychiatrists and others who adhere to their views about CFS/ME. I hope you will ask the psychiatrists and others in the mental health profession there why they are so keen to be involved in ME /CFS. Psychiatry has spectacularly failed to alleviate the problems of mental illness.
Certainly, its effectiveness is not nearly commensurate with the power and prestige the profession seems to enjoy. But, what we see is that, rather than trying to improve their skills in their area of supposed expertise, some members of the profession are increasingly encroaching upon and appropriating physical illnesses, among them CFS/ME in which they have no expertise. Some psychiatrists act as if the large body of evidence of the physical abnormalities in CFS/ME did not exist and pass the illness off as some kind of belief disorder. Psychiatry is now also in the ludicrous position where it tries to treat mental illness by physical means (pills, ECT) and physical illnesses like CFS/ME psychological means (CBT), as well as GET which is not really a medical treatment. Its practice is replete with examples of the abandonment of humanity, ethics and common sense. Why should psychiatrists' self-generated aura of infallibility in judging the human condition be accepted? Where is the evidence to back up this implicit claim?
While you have such an excellent opportunity, I'd like you to ask the psychiatrists how they propose to treat ME/CFS phenomena such as low blood volume, cardiac insufficiency, lack of perfusion to areas of the brain various immune and neurological abnormalities, channelopathy, Low Molecular Weight RNaseL, many deficiencies eg of potassium, infections with mycoplasma and viruses, just to name a few. As you would know, there is well-researched evidence for all of these and more. How do psychiatrists address these serious problems? Where is the evidence that CBT/GET beneficially affect these conditions? How do they manage to ignore the evidence for them and to prescribe treatments which are contraindicated by the physical condition? Is this ethical? I know I am referring to a medical, not psychiatric condition here, but, now that psychiatrists have intruded themselves into the area of CFS/ME they ought to have a responsible plan for addressing its medical problems.
You might also ask, in the interest of clear unambiguous research, how they get the positive results for CFS/ME people in GET studies. You could ask why the Oxford Criteria are repeatedly are used for selection of subjects, when these criteria do not even include 'post-exertional malaise', that is, exercise intolerance, the distinguishing feature of CFS/ME. The use of the Oxford Criteria and of the ambiguous CDC criteria in exercise studies invites an unknown number of the subjects to participate, who very likely have idiopathic fatigue or something else. The results are then passed off as applying to ME/CFS people and widely imposed on us. The conclusions of these flawed studies acquire the status of self-evident truth by merely being repeated uncritically, ad infinitum. The PACE study, using the same inappropriate criteria, seems to be expected to put the cream on the cake and to confirm what is already held to be the truth. How do the proponents of GET manage to continue to recommend it, when they must know by now of its adverse effect on at least some sufferers of CFS/ME?
In the interests of your constituency, the CFS/ME community, I hope you will ask these questions and bring back the responses to your membership.
Yours sincerely,
Susanna Agardy
