Margaret Williams 26th April 2009
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) is not a somatisation disorder. That ME/CFS is not a somatisation disorder is not simply a matter of belief or opinion but is a matter of substantive fact.
ME has been internationally classified since 1969 by the World Health Organisation (WHO) as a disease of the Nervous System.
There are now over 5,000 peer-reviewed published scientific papers which demonstrate unequivocally that it is not a somatisation disorder. To assert otherwise signifies either a serious failure to keep up-to-date with medical science (as NHS Consultants are – or used to be – contractually required to do), or a perverse and irrational denial of a large body of biomedical evidence that shows ME/CFS to be a complex neuroimmune disorder affecting every major bodily system and that recovery is rare.
The wealth of scientific biomarkers that distinguish ME/CFS from “chronic fatigue” (which may indeed be a somatisation disorder) include the following:
· abnormal brain scans (SPECT & PET scans) and MRI scans that are consistent with organic brain syndrome, showing focal demyelination and/or oedema in the sub-cortical area
· a dysregulated HPA axis
· a dysregulated antiviral pathway (RNase-L)
· cardiac abnormalities
· abnormal capillary flow
· low circulating blood volume
· abnormal ergometry test (indicating immediate anaerobic threshold)
· haemodynamic instability
· abnormal immune profile
· gene profiling
All the above investigations are specifically not recommended by NICE in its Clinical Guideline 53 on CFS that was published on 22nd August 2007. This means that they are effectively proscribed in the UK, as no Primary Care Trust (PCT) will fund them if NICE does not recommend them (and NICE Guidelines are to become legally enforceable in 2009).
A (documented) major cause of death in ME/CFS is heart failure.
A mismatch between metabolic demand and cardiac output, even very briefly, will kill.
“Any kind of muscle exercise can cause the patient to be almost incapacitated for some days afterward. In severe cases, the patient is usually confined to bed. What is certain is that when one reviews (the) clinical features and laboratory results, it becomes plain that this is an organic illness in which muscle metabolism is severely affected”. (Postviral fatigue syndrome PO Behan WMH Behan Crit Rev Neurobiol 1988:4:2:157-178)
“In my experience, (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages” (Dr Daniel L Peterson: Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994; published in JCFS 1995:1:3-4:123-125)
“ME in adults is associated with measurable changes in the central nervous system and autonomic function and injury to the cardiovascular, endocrine and other organs and systems. The patient with the diagnosis of ME/CFS is chronically and potentially seriously ill. These ME/CFS patients require a total investigation and essentially a total body mapping to understand the pathophysiology of their illness and to discover what other physicians may have missed. A patient with ME is a patient whose primary disease is central nervous system change, and this is measurable.
The belief that ME/CFS is a psychological illness is the error of our time”. (The Complexities of Diagnosis. Byron Hyde. In: Handbook of Chronic Fatigue Syndrome. Leonard A Jason et al. John Wiley & Sons, Inc. 2003)
“Our patients are terribly ill, misunderstood, and suffer at the hands of a poorly informed medical establishment and society”
(Professor Nancy Klimas, University of Miami, AACFS In-coming Presidential Address: Co-Cure, 21 March 2005: http://www.co-cure.org)
“There is evidence that the patients with this illness experience a level of disability that is equal to that of patients with late-stage AIDS, patients undergoing chemotherapy (and) patients with multiple sclerosis” Professor Nancy Klimas, University of Miami, speaking at the launch of the US CDC campaign to raise awareness of ME/CFS, 3 November 2006, National Press Club, Washington DC)
Margaret Williams 26th April 2009