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 (i.e. not simply
hypothesised):
evidence of
disrupted biology at cell membrane level
evidence of abnormal brain metabolism
evidence of a
reduction in grey matter
evidence of
widespread abnormal cerebral perfusion (hypoperfusion)
evidence of central
nervous system / immune dysfunction
evidence of central
nervous system inflammation and demyelination
evidence of
hypomyelination
evidence of spatial
disorientation
evidence that ME/CFS
is a complex, serious multi-system autoimmune disorder (in
Belgium, the disorder has now been placed between MS and
lupus)
evidence of
significant neutrophil apoptosis
evidence that the
immune system is chronically activated (eg. the CD4:CD8
ratio may be grossly elevated, as seen in multiple
hypersensitivities)
evidence that NK
cell activity is impaired (ie. drastically diminished)
evidence of hair
loss in ME/CFS
evidence that the
vascular biology is abnormal, with disrupted endothelial
function
novel evidence of
significantly elevated levels of isoprostanes (a marker for
oxidative stress, which in ME/CFS rises with exercise
intolerance)
evidence of impaired
proton removal from muscle during exercise
evidence of
cardiac insufficiency and that patients are in a form of
heart failure
evidence of
autonomic dysfunction (especially thermo-dysregulation;
frequency of micturition with nocturia; haemodynamic
instability with labile blood pressure; pooling of blood in
the lower limbs; reduced blood volume (with orthostatic
tachycardia and orthostatic hypotension)
evidence of
respiratory dysfunction, with reduced lung function in all
parameters tested
evidence of
neuroendocrine dysfunction (notably HPA axis dysfunction)
evidence of
recovery rates for oxygen saturation that are 60% lower than
those in normal controls
evidence that the
average maximal oxygen uptake is only 15.2 ml/kg/min, whilst
for controls it was 66.6 ml/kg/min
conclusive
evidence of delayed recovery of muscles after exercise,
with ME/CFS patients reaching exhaustion more rapidly than
controls, with this failure to recover being more pronounced
24 hours after exercise (note: there is no evidence
of de-conditioning)
evidence of
mitochondrial metabolic dysfunction
evidence of
inability to sustain muscle power
evidence of greatly
increased REE (resting energy expenditure)
evidence of
enteroviral particles in muscle biopsies
evidence of a
sensitive marker of muscle inflammation (inflamed tissues
should not be exercised)
evidence of on-going
infection
evidence that the
size of the adrenal glands is reduced by up to 50% (with
reduced cortisol levels)
evidence that up to
92% of ME/CFS patients also have irritable bowel syndrome
(80% of the immune system is located in the gut)
evidence of abnormal
gene expression (at least 35 abnormal genes -- acquired, not
hereditary), specifically those that are important in energy
metabolism; there are more abnormal genes in ME/CFS than
there are in cancer
evidence of profound
cognitive impairment (worse than occurs in AIDS dementia)
evidence of adverse
reactions to medicinal drugs, especially those acting on the
central nervous system, such as anaesthetics
evidence that
symptoms fluctuate from day to day and even from hour to
hour
there is no evidence
that ME/CFS is a psychiatric or behavioural disorder.
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:
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.
