Wednesday, December 1, 2010

Twenty-five years of the Barts Fatigue Service Margaret Williams

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):

• 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:

"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.

May be reposted.
 
 

1 comment:

Linda said...

Hi!
Some patients in Belgium are wondering where the information comes from that "in Belgium, the disorder has now been placed between MS and lupus". This is far beside the truth.
The official treatment policy in Belgium still consists of CBT and GET through the 'CFS-reference centers' installed at the major university hospitals.
We can imagine you are referring to De Meirleir/Englebienne's book (Chronic Fatigue Syndrome: A Biological Approach, from 2002) where the following theoretical assumption was made: "p. 273 CFS and MS may be two extremes of a similar immune dysfunction. CFS has elevated nitric oxide levels and MS has decreased nitric oxide levels. “Between the two extreme situations presented for the worst CFS and chronic MS cases, several
graded autoimmune pathological conditions may fit, including acute MS, lupus erythematosus that shares with CFS the presence in serum of antinuclear antibodies, and type 1 diabetes, in which the abnormalities in the PKR/2-5A pathway receive sustained
attention.” but this theory certainly never gained acceptance in the Belgian medical world.
The very few physicians offering biomedical treatment approaches in Belgium, continue to be regarded as outlaws by our healthcare policy makers, and some of them recently are the victim of severe persecution by the highest health authorities(extremely high fines were imposed driving them to bankruptcy) for offering immune-enhancing therapy to ME/CFS patients. Patients in Belgium are not better off than in our neighbouring countries.
When blogging about science,it is a good thing to add the correct references to the statements made.
Anyway, thanks for your efforts. I just wanted to put this straight, because some of us were puzzled when reading this specific statement.
Regards!
Linda