Dr. Daniel Peterson, a leading M.E. clinician from Sierra Internal Medicine in Nevada, found that “ME/CFS patients experienced greater functional severity than the studied patients with heart disease, virtually all types of cancer and all other chronic illnesses”. The Head of the AIDS and M.E Clinic at Oregon Health Sciences University said that a severe M.E patient “feels effectively the same every day as an AIDS patient feels two weeks before death.” The severity of the illness varies greatly from person to person, with some having to be tube-fed and bed-bound, whereas others are just about able to manage a part-time job. In some cases it can be fatal.
This is a disease that should no longer be controversial. Professor Anthony Komaroff (of Harvard Medical School) confirms “There are over 4,000 papers on the biomedical nature of ME/CFS…spanning over 60 years.” It beggars belief that some doctors still believe that this is a psychological disorder. But it is not surprising since the psychologists/psychiatrists who have the government’s ear have vested interests in the health insurance industry. The Countess of Mar has slated this corruption recently in The House of Lords: http://www.meassociation.org.uk/content/view/826/161/
Unfortunately this all means that the NHS’s treatment approach is based on the should-be-void psychosomatic model of M.E./CFS. If sufferers want any biomedical treatment, we have to go to a private doctor. Internationally renowned Dr. Jonathan Kerr of St George’s University of London and Dr. Sarah Myhill in Wales are at the forefront of M.E. research and treatment in this country. They have discovered that CFS is “heart failure secondary to mitochondrial malfunction”: http://home.att.net/~potsweb/atp.html
Dr Sarah Myhill has published a paper which details ‘A Test for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)’ which she is now using to diagnose patients. The NHS and NICE however are unlikely to even acknowledge this, such is the ignorance and corruption surrounding this illness. http://www.prohealth.com/me-cfs/library/showArticle.cfm?libid=14274&B2=EM021109C
Not only do we have to cope with a serious illness, we have to cope with disbelief from doctors, friends and family. NHS doctors in their ignorance prescribe GET (Graded Exercise Therapy) which has proved to be harmful for most M.E. patients and has caused many to get irreversibly worse. Professor Malcolm Hooper and Margaret Williams wrote:
“In relation to the potential dangers of exercise for people with ME/CFS, there is evidence that in some ME/CFS patients, their antioxidant defences against free radicals (which can cause damage to the cells of the body) are overwhelmed, resulting in cell injury, a process known as oxidative stress. Exercising muscle results in excessive free radical generation, and research has demonstrated that incremental exercise challenge induces a prolonged oxidative stress in ME/CFS patients, who are known to carry a heavy load of oxidative stress.
There is real concern that not only is CBT (Cognitive Behavioural Therapy, the other “treatment” provided by the NHS) ineffective, but that GET is potentially harmful to patients with ME/CFS. It is known that GET may leave up to 82% of ME/CFS patients who have undertaken it irreversibly house or bed-bound. Given what is known about the disorder, this is hardly surprising.
As was noted by Jim Wilson on Co-Cure on 8th July 2007:
“CBT is not a treatment when used for ME/CFS because it basically is merely advice to the ME/CFS patient not to over-exert themselves. That is common sense – not a therapy. Yet (an) industry has sprung up of some health care professionals who get paid for giving ME/CFS patients this simple advice, claiming it is therapy. And CBT is cynically and falsely claimed to be a therapy for ME/CFS by certain government and business interests who use that false claim to imply that ME/CFS is due to some psychological problem of the patient, and not to a biological illness. Those who claim CBT has cured ME/CFS have never proved that claim”.
There has been much unrest at the grant of £2.6 million by the Medical Research Council (MRC) to Wessely School psychiatrists to carry out more “research” into CBT and GET for people with “CFS/ME” (the PACE trials)…The Wessely School teaches that “CFS/ME” patients must disregard their symptoms and continue exercising even if they are absolutely exhausted.”
I need everyone to get the word out, so that these gross injustices will stop, so that more biomedical research will be carried out and so that the psychologists will finally be silenced.
See www.investinme.org for more info on M.E. and the International M.E./CFS Conference
See http://wpinstitute.org/xmrv/ for the latest research on the retrovirus XMRV, which may be the central cause of M.E./CFS
See http://www.cfsviraltreatment.com/ for information about viruses and M.E.
Comments & References