Twenty-five years of the Barts Fatigue Service
Margaret Williams 1st December 2010
The Barts “Fatigue Service” 25th birthday party held on 29th November 2010 was proclaimed by the Wessely School as being a mile-stone achievement in their “service” for people with ME/CFS (known by them “CFS/ME”).
Their celebrations gave rise to numerous critical appraisals of exactly what has been achieved by them in those 25 years from ME/CFS sufferers’ perspective (this being the disorder in which the Wessely School profess to be the experts and which they are allegedly studying in the £5 million MRC PACE Trial, even though on 12th May 2004 the Parliamentary Under Secretary of State at the Department of Health, Dr Stephen Ladyman, confirmed that GPs were offered financial inducements – a more refined term than “bribes” – to persuade patients who do not suffer from ME/CFS to agree to be entered into the trial, which would seem to indicate that something is seriously wrong with the PACE trial).
Given that behavioural interventions may help some people with fatigue-inducing somatoform disorders, the self-congratulations and obvious pride of Professor Peter White’s “Fatigue Service” staff and others in the Wessely School would not matter but for one cardinal consideration, which is that they insist on asserting that, amongst those suffering from chronic “fatigue”, they are studying and helping patients with ME/CFS. There is substantial evidence to the contrary, because they continue in their belief that “CFS/ME” is a continuum of on-going tiredness perpetuated by deconditioning and false illness beliefs, whereas ME/CFS is a chronic inflammatory neuroimmune disorder in which the following have all been demonstrated (ie. not simply hypothesised):
Over a decade ago, Dr Elizabeth Dowsett, a former President of the ME Association and a member of the Chief Medical Officer’s Working Group on CFS/ME, was clear:
“There is ample evidence that ME is primarily a neurological illness, although non-neurological complications affecting the liver, cardiac and skeletal muscle, endocrine and lymphoid tissues are also recognised…The commonest causes of relapse are physical or mental over-exertion…. The prescription of increasing exercise can only be counter-productive…. Some 20% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led, in several cases, to sudden death following exercise…. Neurological problems include exhaustion, weakness and collapse following mental or physical exertion beyond the patient’s capacity…. This arises from metabolic damage…. Problems with balance are common in ME due to involvement of spinal nerve tracts in the damaged brain stem…. Over 70% of ME patients suffer from significant bone and muscle pain (a further consequence of brain stem damage which seriously affects their mobility)…. Other patients have in addition metabolic damage to muscle fibres…. 30% of patients with abnormal exercise tests have evidence of persistent infection in the muscles, and evidence of muscle infarcts…. (Patients with ME exhibit) jitter due to incoordinated muscle fibre action, following damage to the neuromuscular junction…. Patients with ME suffer a variety of symptoms arising from autonomic nervous system dysfunction, including liability to a dangerous drop in blood pressure on standing for more than a few minutes” (http://www.25megroup.org).
It seems increasingly apparent that, no matter the calibre and quantity of evidence that has long ago shown the Wessely School to be wrong about ME/CFS, their 25-year old mind-set remains set in stone.