April 21, 2011 at 10:07 am:
Unfortunately Dr Monaghan’s letter repeats the litany of invalidation that ME patients have been hearing for many years.
When medicine fails to properly diagnose a condition, the patient is often blamed.
The patient may then be given a sociological diagnosis – or a psychiatric one. These diagnoses are mostly delivered according to the evidence-free beliefs of the dispenser of the diagnosis and done with resolute unawareness or dismissal of the biomedical evidence underlying ME.
ME patients should not need to be the ones to tell the world about ME in order to try and correct the misunderstanding and misinformation about it. This is only necessary because the major part of the medical profession has abandoned this condition and so we are left to fend for ourselves. Even as we try to do something about our condition we are accused of being victims and playing the sick role. We are actually sick and we resist a sick role, trying to live as normally as possible within our limitations. Certainly, in 16 years with this illness I have not identified any advantages which supposedly accrue to this role. Does Dr Monaghan also accuse patients with other diseases raising awareness about their condition of cultivating victimhood?
Some of us are able to use a computer some of the time and this is about all we are capable of. The intense symptoms, pain, lack of energy and post-exertional malaise, etc. prevent us from lobbying in other ways. Some of us are incapable of using a computer at all.
The PACE study is unscientific, sidesteps the physical problems of ME and misrepresents ME. It is the patients who best know whether exercise suits them and bear the after-effects. They must be heard. Evidence does exist which shows that ME patients react differently to exercise from healthy controls. One doctor who investigates cardiac and other pathologies in ME warns: “Without a clear understanding of these significant problem areas, it is simply indefensible and potentially dangerous to place an unsuspecting patient in a graduated exercise program”.
Doctors’ knowledge of the biomedical bases of ME and scientific open-mindedness must replace long-distance speculation about the mental state of people with ME.
See also: Metabolic dysfunction causes Post-Exertional malaise in ME/CFS