Thursday, July 23, 2009

Documented Pathology that Contra-indicates Exercise

Permission to Repost

Documented pathology seen in ME/CFS that contra-indicates the use of Graded
Exercise Therapy
Margaret Williams                 23rd July 2009
The evidence-base of pathology that has been demonstrated in ME/CFS appears
within a larger document that is already in the public domain, but is now
provided as a 9 page separate item for ease of access.
The UK ME/CFS community may not yet be fully aware of the content of Dr
Esther Crawley's presentation on 8th July 2009 to the Countess of Mar's
"Forward -ME" group meeting held at the House of Lords.  The Minutes of that
meeting and Dr Crawley's power-point presentation are accessible at
Of particular note are the following points made by Dr Crawley:
•         The CCRNC (CFS/ME Clinical and Research Network and Collaboration,
of which she is Chair) is a "multidisciplinary organisation which exists to
promote and support the delivery of evidenced based treatment for children,
young people and adults with CFS/ME throughout the UK" whose objective is
"To champion evidence-based approaches to the treatment of CFS/ME, such as
those provided in the NICE guidelines" and which will use "clinical
expertise to inform healthcare policy" and will "provide training for
clinicians and researchers from all disciplines involved in the diagnosis
and treatment of CFS/ME".
•         The CCRNC has an "Active training programme" and has "the ability
to provide national training programmes".
•         The CCRNC will "invite no more than four people drawn from
National UK CFS/ME organisations which explicitly support the aims and
constitution of the organisation to sit on the Executive committee as either
observers or members".
•         Its research strength is that it has the "Largest cohort in the
•         Its strengths are "working together -- 600 clinicians and
researchers, MRC, NIHR (National Institute for Health Research), Welcome
(sic), patient and carer reps, charity membership".
It is particularly notable that the Minutes record that when asked by Dr
Charles Shepherd "whether, in the light of the widespread opposition to the
NICE Guidelines, charities that were opposed to them would be invited to
become members or associates of the CCRNC executive", Dr Crawley's response
was: "In order to join the collaborative, charities would be expected to
sign up to the evidence-based approach".
The only possible interpretation of this is that patients' charities are
welcome to participate provided that they accept the behavioural
modification interventions of CBT/GET recommended in the NICE Guideline (for
which Dr Crawley was a member of the Guideline Development Group).
This would seem to be something akin to medical totalitarianism, especially
given that Wessely School "evidence-base" upon which the NICE Guideline is
predicated has been so stringently criticised by international ME/CFS
See, for example:  
It is worth recalling that at the Royal Society of Medicine meeting on
"Medicine and me: ME and CFS" held just three days later on 11th July 2009,
MRC Professor of Clinical Immunopharmacology Stephen Holgate said that at
the MRC, referees tend to reinforce the status quo and that he was not sure
if his wish for an MRC inter-disciplinary group involving immunologists,
neurologists and infectious diseases physicians would happen, which would
seem to indicate that the psychiatrists' stranglehold on MRC funding for
biomedical research into ME/CFS is set to continue.
The Forward-ME Minutes also record that Dr Crawley said: "the reputation the
CFS/ME charities had for infighting was not particularly helpful and
prevented research and clinical involvement".
Given that the "infighting" may have arisen because of the polarised views
about the nature of ME/CFS, with the Government-funded charities (Action for
ME and The Association of Young People with ME, to the latter of which Dr
Crawley is Medical Advisor) supporting the NICE Guideline that is
underpinned by flawed research, whilst other charities base their stance on
the international evidence that shows the NICE Guideline to be seriously
misinformed, it may be timely to look again at the following
Dr. Crawley stated that only those ME/CFS charities which agree to "sign up
to the evidence based approach" are to be permitted to join her
Given the volume of biomedical evidence that does not support Graded Exercise Therapy it would appear that in this instance signing up to an "evidence based approach" involves signing up to an approach that ignores most of the evidence.
Science is not furthered by a self-reinforcing "collaborative" determined to
exclude dissenting voices; rather, a vigorous and honest dialectic is
required. Medicine has no place for cabals and the lazy thinking they
The "Forward-ME" Minutes record that Lady Mar said she hoped that Dr Crawley
would "agree to continue to work with Forward-ME"; one can only wonder,
sadly, just how far backwards her "Forward-ME" initiative will carry the UK
ME/CFS community.
Evidence-based research showing pathology that contra-indicates the use of
graded exercise in ME/CFS
There is an extensive literature from 1956 to date on the significant
pathology that has been repeatedly demonstrated in ME/CFS, but not in
"CFS/ME" or "chronic fatigue"; this can be accessed on the ME Research UK
website at
and also at  .
According to Professor Nancy Klimas, ME/CFS can be as severe as congestive
heart failure and the most important symptom of all is post-exertional
relapse (presentation at the ME Research UK International Conference held in
Cambridge in May 2008).
Unique vascular abnormalities have been demonstrated in ME/CFS, with markers
of oxidative stress. Oxidative stress is caused by highly reactive molecules
known as free radicals circulating in the bloodstream of people with ME/CFS
and results in cell injury. Oxidative stress levels are raised in ME/CFS and
are associated with clinical symptoms.
(Kennedy G, Spence VA, McLaren M,
Hill A, Underwood C, Belch JJF. Free Radical Bio Med. 2005;39:584-589).
Exercising muscle is a prime contender for excessive free radical generation
(Niess AM, Simon P. Front Biosci. 2007 Sep 1;12:4826-38).
Research has shown that many patients with ME/CFS may have an inflammatory
condition and be in a 'pro-oxidant' state
(Klimas NG, Koneru AO.  Curr
Rheumatol Rep. 2007;9(6):482-7).
In 1983, UK researchers documented evidence of a consistent pattern of
complexity, including  "malaise, exhaustion on physical or mental effort,
chest pain, palpitations, tachycardia, polyarthralgia, muscle pains, back
pain, true vertigo, dizziness, tinnitus, nausea, diarrhoea, abdominal
cramps, epigastric pain, headaches, paraesthesiae and dysuria"
and Bell, JRCP: 1983:339-341).
In 1984, Arnold et al demonstrated excessive intracellular acidosis of
skeletal muscle on exercise in ME/CFS patients, with a significant
abnormality in oxidative muscle metabolism and a resultant acceleration in
(Proceedings of the Third Annual Meeting of the Society for
Magnetic Resonance in Medicine, New York: 1984: 12-13).
In 1985, UK researchers demonstrated muscle abnormalities in ME/CFS
patients: "The post-viral fatigue syndrome, also known as ME, has been
recognised recently as a distinct neurological entity with increasing
evidence of the organic nature of the disease. The most important findings
were type II fibre predominance, subtle and scattered fibre necrosis and
bizarre tubular structures and mitochondrial abnormalities. About 75% of the
patients had definitely abnormal single fibre electromyography results"
(Goran A Jamal   Stig Hansen   JNNP 1985:48:691-694).
In 1987, Archer demonstrated that: "Relapses are precipitated by undue
physical or mental stress. However compelling the evidence for an hysterical
basis may be, there is further, equally compelling, evidence of organic
disease. Some patients do have frank neurological signs. Muscle biopsies
showed necrosis and type II fibre predominance"
(JRCGP: 1987:37:212-216).
It was documented as long ago as 1988 that there was "general agreement that
(ME's) distinguishing characteristic is severe muscle fatigability, made
worse by exercise.  It becomes apparent that any kind of muscle exercise can
cause patients to be almost incapacitated (and) the patient is usually
confined to bed.  What is certain is that it becomes plain that this is an
organic illness in which muscle metabolism is severely affected
" (Crit Rev
Neurobiol: 1988:4:2:157-178).
In 1988, UK researchers Archard and Bowles et al published the results of
their research into muscle abnormalities in ME/CFS: "These data show that
enterovirus RNA is present in skeletal muscle of some patients with
postviral fatigue syndrome up to 20 years after onset of disease and suggest
that persistent viral infection has an aetiological role. These results
provide further evidence that Coxsackie B virus plays a major role in ME,
either directly or by triggering immunological responses which result in
abnormal muscle metabolism" (
JRSM 1988:81:325-331).
Also in 1988, Teahon et al published a study of skeletal muscle function in
ME/CFS; it showed significantly lower levels of intracellular RNA,
suggesting that ME/CFS patients have an impaired capacity to synthesise
muscle protein, a finding which cannot be explained by disuse
Science 1988: 75: Suppl 18:45).
In 1989, Professor Tim Peters spoke at a meeting of microbiologists held at
the University of Cambridge: "Other muscle abnormalities have been reported,
with decreased levels inside the cell of a key enzyme called succinate
dehydrogenase, which plays an important role in energy production inside the
mitochondria (the power house of the cell)".  A report of this conference
was published in the ME Association Newsletter, Autumn 1989, page 16.
In 1990, a UK researcher pointed out the folly of CBT/GET: "It has been
suggested that a new approach to the treatment of patients with postviral
fatigue syndrome would be the adoption of a cognitive behavioural model"
(Wessely S, David A et al. JRCGP 1989:39:26-29).  Those who are chronically
ill have recognised the folly of the approach and, far from being
maladaptive, their behaviour shows that they have insight into their
  ( D O Ho-Yen    JRCGP 1990:40:37-39).
Also in 1990, the BMJ published an important study: "Patients with the
chronic fatigue syndrome have reduced aerobic work capacity compared with
normal subjects. We found that patients with the chronic fatigue syndrome
have a lower exercise tolerance than normal subjects. Previous studies have
shown biochemical and structural abnormalities of muscle in patients with
the chronic fatigue syndrome" (Aerobic work capacity in patients with
chronic fatigue syndrome.
   MS Riley DR McClusky et al 
In 1991, evidence of muscle damage in ME/CFS was demonstrated by Professor
Wilhelmina Behan from Glasgow: "The pleomorphism of the mitochondria in the
patients' muscle biopsies was in clear contrast to the findings in the
normal control biopsies. Diffuse or focal atrophy of type II fibres has been
reported, and this does indicate muscle damage and not just muscle disuse". 
This study was done on a fairly homogeneous population and 80% of the
biopsies showed structural damage to the mitochondria
  (Acta Neuropathol
In 1992, US researchers (including Robert Gallo, the co-discoverer of the
HIV virus) found that "57% of patients were bed-ridden, shut in or unable to
work. Immunologic (lymphocyte phenotying) studies revealed a significantly
increased CD4 / CD8 ratio. Magnetic resonance scans of the brain showed
punctate, subcortical areas of high signal intensity consistent with oedema
or demyelination in 78% of patients. Neurologic symptoms, MRI findings, and
lymphocyte phenotyping studies suggest that the patients may have been
experiencing a chronic, immunologically-mediated inflammatory process of the
central nervous system" (A chronic illness characterized by fatigue,
neurologic and immunologic disorders, and active human herpes Type 6
  Dedra Buchwald, Paul Cheney, Robert Gallo, Anthony L Komaroff
et al   Ann Intern Med 1992:116:2:103-113).
Also in 1992, the US Department of Health and Human Services produced a
pamphlet on ME/CFS for the guidance of physicians (NIH Publication No.
92-484) which stated: "ME/CFS symptoms overlap with those of many
well-recognised illnesses, for example, lupus erythematosus (SLE) and
multiple sclerosis. Psychiatric evaluations fail to identify any psychiatric
Many people with ME/CFS have neurologic symptoms, including
parasthesias, dysequilibrium and visual blurring.  A few patients have more
dramatic neurologic events such as seizures, periods of severe visual
impairment, and periods of paresis. Evidence suggests that several latent
viruses may be actively replicating more often in (ME)CFS patients that in
healthy control subjects. Most investigators believe that reactivation of
these viruses is probably secondary to some immunologic challenge. It is
important to avoid situations that are physically stressful".
On 18th February 1993, Professor Paul Cheney testified before the US FDA
Scientific Advisory Committee as follows: "I have evaluated over 2,500
cases. At best, it is a prolonged post-viral syndrome with slow recovery. At
worst, it is a nightmare of increasing disability with both physical and
neurocognitive components. The worst cases have both an MS-like and an
AIDS-like clinical appearance.
We have lost five cases in the last six
months.  The most difficult thing to treat is the severe pain.  Half have
abnormal MRI scans. 80% have abnormal SPECT scans. 95% have abnormal
cognitive-evoked EEG brain maps. Most have abnormal neurological
examination. 40% have impaired cutaneous skin test responses to multiple
antigens.  Most have evidence of T-cell activation.   80% have evidence of
an up-regulated 2-5A antiviral pathway.
 80% of cases are unable to work or
attend school.  We admit regularly to hospital with an inability to care for
Also in 1993, Professor Anthony Komaroff from Harvard published his
"Clinical presentation of chronic fatigue syndrome" in which he stated: 
"ME/CFS can last for years and is associated with marked impairment. (It) is
a terribly destructive illness. The tenacity and ferocity of the fatigue can
be extraordinary. As for the symptoms that accompany the fatigue, it is
striking that these symptoms are experienced not just occasionally but are
present virtually all the time. In our experience, 80% of patients with
ME/CFS have an exceptional post-exertional malaise. (Physical examination
findings) include abnormal Romberg test (and) hepatomegaly (and)
splenomegaly. Anyone who has cared for patients with ME/CFS will recognize
that (the) description of the patient with lupus eloquently describes many
patients with ME/CFS as well"
(In: Chronic Fatigue Syndrome.  John Wiley &
Sons, Chichester. Ciba Foundation Symposium 173:43-61).
In 1993, UK researchers Barnes et al demonstrated that there is a
significant abnormality in oxidative muscle metabolism with a resultant
acceleration in glycolysis in ME/CFS patients
  [cf. the work of Arnold in
1984 above] (JNNP:1993:56:679-683).
In 1995, UK researchers Lane and Archard published the article "Exercise
response and psychiatric disorder in chronic fatigue syndrome", which
stated: "In previous studies patients with ME/CFS showed exercise
intolerance in incremental exercise tests.  We examined venous blood lactate
responses to exercise at a work rate below the anaerobic threshold in
relation to psychiatric disorder. Our results suggest that some patients
with ME/CFS have impaired muscle metabolism that is not readily explained by
physical inactivity or psychiatric disorder"
(BMJ 1995:311:544-545).
That same year, UK researchers Geoffrey Clements et al reported that:
"Enteroviral sequences were found in significantly more ME/CFS patients than
in the two comparison groups. The presence of the enteroviral sequences in a
significant number of patients points to some role in ME/CFS.  A variety of
immunological disturbances have been reported for ME/CFS patients which may
relate in some way to the enteroviral persistence. This study provides
evidence for the involvement of enteroviruses in just under half of the
patients presenting with ME/CFS and it confirms and extends previous studies
using muscle biopsies. We provide evidence for the presence of viral
sequences in serum in over 40% of ME/CFS patients
" (J Med Virol
In 1997, Charles Lapp, Professor of Community Medicine at Duke University,
Charlotte, North Carolina, found that a trial allowing ME/CFS patients to
reach their maximum oxygen consumption within 8-10 minutes of exercise
caused 74% to experience a worsening of fatigue and that none improved.  The
average relapse lasted 8.82 days.  Lapp concluded: "These findings suggest
that, pushed to maximal exertion, patients with ME/CFS may relapse"
(Am J
Med 1997:103:83-84).
In 1998, a study of autonomic function by Rowe and Calkins found that
"Virtually all ME/CFS patients (regardless of their haemodynamic response)
have their symptoms provoked by standing upright"
(Am J Med 1998:105:
(3A):15S – 21S).
Also in 1998, US researchers presented key evidence: "The results showed
that in ME/CFS patients, a lower stroke volume was highly predictive of
illness severity: across three different postures, the most severely
affected patients were found to have a lower stroke volume and cardiac
output compared with those with more moderate illness.
These findings
suggest a low flow circulatory rate in the most severe cases of ME/CFS; this
may indicate a defect in the higher cortical modulation of cardiovascular
autonomic control. In the most severely affected, situations may arise where
a demand for blood flow to the brain may exceed the supply, with a
possibility of ischaemia and a decrement of function"
  (Arnold Peckerman  
Benjamin Natelson et al.  Presented at the Fourth International AACFS
Research & Clinical Conference on ME/CFS, Mass. USA).
In 1998, Racciatti et al found that "(ME)CFS is a severely disabling
illness. Regional brain perfusion impairment (mainly hypoperfusion) was
found in 83.9% of (ME)CFS patients. This study confirmed previous reports of
brain perfusion impairment in (ME)CFS, providing objective evidence of
central nervous system dysfunction".
  ("Brain SPET in Chronic Fatigue
Syndrome": Fourth AACFS International Research & Clinical Conference, Mass:
That same year, UK researchers Russell Lane and Leonard Archard published
their findings of muscle abnormalities in response to exercise in ME/CFS
patients: "The object of this study was to examine the proportions of types
I and II muscle fibres and the degree of muscle fibre atrophy and
hypertrophy in patients with ME/CFS in relation to lactate responses to
exercise, and to determine to what extent any abnormalities found might be
due to inactivity. Muscle fibre histometry in patients with ME/CFS did not
show changes expected as a result of inactivity
. The authors note that one
of these patients had an inflammatory infiltrate, and it would seem that
inflammation and class I MHC expression may occur in biopsies from patients
with ME/CFS. The authors note that this is of some interest, as they have
argued previously that some forms of ME/CFS may follow a previous
virally-mediated inflammatory myopathy". In general, following exercise,
patients with ME/CFS showed more type I muscle fibre predominance and
infrequent muscle fibre atrophy, unlike that which would be expected in
healthy sedentary people.
(JNNP 1998:64:362-367).
In 1999, Paul et al provided irrefutable evidence of delayed muscle recovery
after exercise. That paper states: "The use of 31 P-nuclear magnetic
resonance (31 P-NMR) has now provided positive evidence of defective
oxidative capacity in ME/CFS. Patients with ME/CFS reach exhaustion more
rapidly than normal subjects, in keeping with an abnormality in oxidative
metabolism and a resultant acceleration of glycolysis in the working
skeletal muscles. When the rate of resynthesis of phosphocreatinine (PCr)
following exercise is measured, this abnormality is confirmed. (This)
provides a conclusive demonstration that recovery is significantly delayed
in patients with ME/CFS. The results demonstrate that patients with ME/CFS
fail to recover properly from fatiguing exercise and that this failure is
more pronounced 24 hours after exercise"
(European Journal of Neurology
In 2000, an important Belgian / Australian collaborative study entitled
"Exercise Capacity in Chronic Fatigue Syndrome" was unequivocal: "Comparing
the exercise capacity in our patients with data from other studies shows a
functionality similar to that of individuals with chronic heart failure,
patients with chronic obstructive pulmonary disease, and those with skeletal
muscle disorder". Specific findings included (i) the resting heart rate of
patients was higher than controls but patients' maximal heart rate at
exhaustion was lower than controls  (ii) the maximal workload achieved by
patients was almost half that achieved by controls  (iii) the maximal oxygen
uptake was almost half that achieved by controls.  This would affect
patients' physical abilities, leading the authors to comment: "This study
clearly shows that patients with ME/CFS are limited in their capabilities".
Taken together, these findings "suggest that alteration in cardiac function
is a primary factor associated with the reduction in exercise capacity in
(P De Becker et al. Arch Intern Med 2000:160:3270-3277).
In 2001 an Australian study by Sargent, Scroop, Burnett et al from the
Adelaide CFS Research Unit found that ME/CFS patients are not de-conditioned
and that "There is no physiological basis for recommending graded exercise programmes" (The Alison Hunter Memorial Foundation ME/CFS Clinical and
Scientific Meeting, Sydney, Australia, December 2001).
This was later published (Med. Sci. Sports Exerc: 2002:34:1:51-56) and the
authors stated: "The fatigue is often present at rest and exacerbated by the
simplest of physical tasks. The purpose of the present study was to employ
'gold standard' maximal exercise testing methodology. Exercise performance is well recognised to be impaired in ME/CFS patients, with a reduced exercise time to exhaustion being a common finding. The present findings indicate that physical deconditioning (is not) a critical factor in the fatigue that (patients) experience.  Although the recommendation or imposition of exercise-training programmes may have benefit in terms of social interaction, such programmes could well be based on a false premise if the intention is to improve well-being by correcting the effects of deconditioning".
In 2003, Professor Ben Natelson from the US found that "The patients with ME/CFS (indicated) profound physical impairment.  These scores tended to be
below the published norm for patients with cancer, congestive heart failure and myocardial infarction"
(J Nerv Ment Dis 2003:191:324-331).
Also in 2003, Peckerman and Natelson et al from the US were specific about
circulatory problems in ME/CFS: "Findings indicative of a problem with
circulation have been reported in patients with ME/CFS. (Our) results
provide evidence of reduced cardiac output in severe ME/CFS. They suggest
that in some patients, blood pressure is maintained at the cost of
restricted flow, possibly resulting in a low circulatory state. Thus there
may be periods in daily activities when demands for blood flow are not
adequately met, compromising metabolic processes in at least some vascular
compartments. Several deficiencies capable of affecting cardiac output have
been reported in ME/CFS, including lower blood volume, impaired venous
regulation, and changes in autonomic, endocrine and cardiac function.
abnormalities causing a reduction in cardiac output in ME/CFS thus may be
dispersed over multiple systems. (Further research) should be directed at
conditions that may not be overtly expressed in symptoms of ME/CFS, such as
under-perfusion in the kidneys and the gut, as the organs in which the
initial conservation of cardiac output takes place. The patients with severe
ME/CFS had significantly lower stroke volume and cardiac output than the
controls and less ill patients. In summary, this study provides indication
of reduced cardiac output in some patients with ME/CFS
" (Am J Med Sci
In 2003, Byron Hyde, medical adviser on ME/CFS to the Canadian Government,
pointed out that "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.
In 2003 an important UK study of skeletal muscle tissue by neurologist
Russell Lane et al provided evidence of impaired mitochondrial structure and
in ME/CFS patients, once again demolishing the "de-conditioning"
theory (JNNP: 2003:74:1382-1386).

In the Summer of 2004, Professors Christopher Snell and Mark VanNess from
the University of the Pacific (specialists in sports medicine and muscle
function who have been involved in ME/CFS research since 1998) published an
article in The CFIDS Chronicle in which they wrote: "Healthcare
professionals often recommend aerobic exercise as a cure-all for the
symptoms of ME/CFS without fully understanding the consequences (and) the
results can be devastating (and can lead to) symptom exacerbation,
post-exertional malaise and even collapse. It is obvious that persons with
ME/CFS do not recover well from aerobic activity.  This may be because, for
them, the activity is not aerobic.  The aerobic system depends on a constant
supply of oxygen being delivered to active muscles.  There is evidence that
this process may be impaired in ME/CFS. In the absence of an adequate supply
of oxygen, energy production shifts to anaerobic (without oxygen) process,
leading to oxygen debt.  Oxygen debt equals fatigue and before normalcy can
return (that debt) must be repaid. Interest rates on the (oxygen debt) may
be significantly high.
Exercise therapy for ME/CFS will not work because one
size does not fit all".
In October 2004, at the 7th AACFS International Conference held in Madison,
Wisconsin, Susan Levine from Columbia presented evidence of an analysis of
metabolic features using MRSI (magnetic resonance spectroscopy imaging)
which showed elevated lactate levels in ME/CFS patients, suggesting
mitochondrial metabolic dysfunction similar to mitochondrial
encephalomyopathy. Elevation of thalamic choline was also demonstrated,
suggesting the presence of neuronal damage.
At the same International Conference, Spanish researchers (Garcia-Quintana)
presented their work on aerobic exercise, providing evidence of low maximal
oxygen uptake in ME/CFS patients.  This confirmed previous studies showing
that patients with ME/CFS have a markedly reduced aerobic work capacity on
bicycle ergometry.
At this Conference, findings were presented by a Belgian team (Nijs) which
provided evidence of underlying lung damage through intracellular immune
dysregulation, with impairment of cardiopulmonary function – elevated
elastase levels could damage lung tissue and impair oxygen diffusion across
the alveoli in the lungs, potentially explaining decreased oxygen delivery
to tissues that is seen in ME/CFS.
  (This presentation was singled out as
being outstanding).
The "Exercise Workshop" at this same conference highlighted the
understanding that people with ME/CFS suffer exercise intolerance and
post-exertional malaise unless they stay within prescribed limits, the limit
suggested being the anaerobic threshold (AT -- this is the time during
exertion that the heart and lungs can no longer provide adequate oxygen to
muscles, and muscle metabolism changes from aerobic to anaerobic; it is well
known that this change occurs unusually early in people with ME/CFS). If the
anaerobic threshold is determined to occur at 4.5 minutes, then the patient
is advised to exert no more than 4 to 4.5 minutes before stopping to rest.
(For conference reports, see  by Professor Charles
Lapp from the US and Co-Cure NOT, RES: 2nd November 2004 by Dr Rosamund
Vallings from New Zealand).
In 2005, Black and McCully published their results of an exercise study in
patients with ME/CFS: "This analysis suggests that ME/CFS patients may
develop exercise intolerance as demonstrated by reduced total activity after
4 – 10 days.  The inability to sustain target levels, associated with
pronounced worsening of symptomatology, suggests the subjects with ME/CFS
had reached their activity limit
"  (Dyn Med 2005: Oct 24: 4 (1): 10).
Black and McCully's results concur with those of Bazelmans et al that were
published in the same year.  That study examined the effects of exercise on
symptoms and activity in ME/CFS: "For ME/CFS patients, daily observed
fatigue was increased up to two days after the exercise test.  For controls,
fatigue returned to baseline after two hours.  Fatigue in ME/CFS patients
increased after exercise"
(J Psychosom Res 2005:59:4:201-208).
Also in 2005, Jammes et al assessed increased oxidative stress and altered
muscle excitability in response to incremental exercise in ME/CFS patients:
"The data reported here were taken from well-rested subjects and research
has demonstrated that incremental exercise challenge potentiates a prolonged
and accentuated oxidant stress that might well account for post-exercise
symptoms in ME/CFS"
(J Intern Med 2005: 257 (3):299-310).
In 2006, Belgian researchers Nijs and De Meirleir reported on the observed
associations between musculoskeletal pain severity and disability, noting
that pain was as important as fatigue to ME/CFS patients: "A few years ago,
little was known about the nature of chronic musculoskeletal pain in
ME/CFS.  Research data gathered around the world enables clinicians to
understand, at least in part, musculoskeletal pain in ME/CFS patients. Fear
of movement (kinesiophobia) is not related to exercise performance in ME/CFS
patients.  From a pathophysiologic perspective, the evidence of a high
prevalence of opportunistic infections is consistent with the numerous
reports of deregulated and suppressed immune functioning in ME/CFS
patients.  Infection triggers the release of the pro-inflammatory cytokine
interleukin-1e which is known to play a major role in inducing
cyclooxygenase-2 (COX-2) and prostaglandin E2 expression in the central
nervous system. Upregulation of COX-2 and prostaglandin E2 sensitises
peripheral nerve terminals. Even peripheral infections activate spinal cord
glia (both microglia and astrocytes), which in turn enhance the pain
response by releasing nitric oxide (NO) and pro-inflammatory cytokines. 
These communication pathways can explain the wide variety of physiological
symptoms seen in ME/CFS. Experimental evidence has shown that ME/CFS
patients respond to incremental exercise with a lengthened and accentuated
oxidative stress response, explaining muscle pain and post-exertional
malaise as typically seen in ME/CFS.
  In many of the published studies,
graded exercise therapy has been adopted as a component of the CBT programme
(i.e. graded exercise was used as a way to diminish avoidance behaviour
towards physical activity).  Unfortunately, the studies examining the
effectiveness of GET/CBT in ME/CFS did not use musculoskeletal pain as an
outcome measure (and) none of the studies applied the current diagnostic
criteria for ME/CFS.  From a large treatment audit amongst British ME/CFS
patients, it was concluded that approximately 50% stated that GET worsened
their condition.  Finally, graded exercise therapy does not comply with our
current understanding of ME/CFS exercise physiology.  Evidence is now
available showing increased oxidative stress in response to (sub)maximal
exercise and subsequent increased fatigue and post-exertional malaise
(Manual Therapy 2006: Aug. 11(3):187-189).
In 2007 a study by Lerner et al found that "A progressive cardiomyopathy
caused by incomplete virus multiplication in ME/CFS patients is present"
(In Vivo 2004:18:4:417-424).
In 2007, collaborating researchers in Japan and America noted that people
with ME/CFS reported substantial symptom worsening after exercise, symptoms
being most severe on the fifth day. There was no cognitive or psychological
benefit to the exercise, and patients suffered physical decline
K, Cook DB, Natelson BH et al.  Physiol Behav  July 24, 2007).
In 2008, a collaborative study involving researchers from Belgium, the UK
and Australia (published by J Nijs, L Paul and K Wallman as a Special Report
in J Rehabil Med 2008:40:241-247) examined the controversy about exercise
for patients with ME/CFS.  Although published after the production of the
NICE Guideline, the paper contains relevant references showing adverse
effects of GET
that were published before the Guideline (and so were
available to the GDG):
"ME/CFS describes a disorder of chronic debilitating fatigue that cannot be
explained by any known medical or psychological condition. The Cochrane
Collaboration advises practitioners to implement graded exercise therapy for
patients with ME/CFS, using cognitive behavioural principles. CBT represents
a psychological and physical intervention approach aimed at assisting
individuals in re-evaluating concepts related to their illness and in
adopting thoughts and behaviours designed to promote recovery (the reference
for this statement is Chalder, Deale and Wessely et al. Am J Med
1995:98:419-420). This approach to GET advises patients to continue
exercising at the same level even when they develop symptoms in response to
exercise (two references are provided for this statement, one being Fulcher
KY and White PD, BMJ 1997:314:1647-1652 – this being one of the RCTs based
on the Oxford criteria that the Guideline Development Group relied upon for
its recommendation of GET.  The other reference was Clark LV and White PD (J
Mental Health 2005: 14: 237-252), in which Clark and White state that
patients with ME/CFS are de-conditioned, and argue that: "Patient education
is necessary to inform patients of the positive benefit / risk ratio in
order to improve acceptance and adherence").  Nijs et al continue:
"Conversely, there is evidence of immune dysfunction in ME/CFS, and research
shows further deregulation of the immune system in response to too-vigorous
exercise, leading to an increase in fatigue and post-exertional malaise. It
has been shown that even a 30% increase in activity frequently triggers a
(ref: Black CD, O'Connor, McCully K. Dynamic Medicine 2005:4:3). The
severe exacerbation of symptoms following exercise, as seen in patients with
ME/CFS, is not present in other disorders where fatigue is a predominant
symptom. This post-exertional malaise is a primary characteristic evident in
up to 95% of people with ME/CFS. It is possible that exercise at ANY
intensity that exceeds an ME/CFS patient's physical capabilities may result
in the worsening of symptoms. Early approaches to GET advised patients to
continue exercising at the same level when they developed symptoms in
response to the exercise.  This led to exacerbation of symptoms and adverse
feedback from patient and patient charities".

The understanding of ME/CFS cannot be furthered by the continued ignoring of
this evidence-base.

Wednesday, July 22, 2009

More on CDC and CFS

I hadn't planned to put this on CO-CURE, but the CDC's  latest and perhaps
greatest publication about CFS:

"Use of medications among people with chronic fatigue syndrome and healthy
persons: a population-based study of fatiguing illness in Georgia."

inspired me.

CFSAC  27th May, 2009

First, I would like to thank Dr Wanda Jones for finally making these meetings
accessible to those of us who are too ill to attend them.  It's a project that
we started working on in 2005 and ended up in the peculiar situation of the
Office of Civil Rights being in violation of our civil rights.  We are
delighted that Dr Jones was able to break the log-jam and ensure that those
who cannot attend are properly accommodated. We also thank Pandora for making
it plain that there are many who wanted to attend and benefit from the
meetings, but whose disability prevented them from doing so.

You will undoubtedly have heard that the definition of the illness which has
come to be known as chronic fatigue syndrome is too broad. It is. The
International Consensus Definition of '94 was a travesty. We were told that
broadening the 1988 definition would result in better research, a greater
likelihood that a cause of the illness would be discovered.  Fifteen years
later and we are far from seeing any indication that that assumption is
correct.  Those who got together for the consensus definition are still far
apart. Their opinions are as polarized as they were when they created that
research definition.

Which brings us to a question -­ why try to have a consensus definition at
all? Science is not about consensus; it's about finding truth. Science is not
democratic. If opinions vary as dramatically as they do re: CFS, there is no
point in trying to find a middle ground.

While one group continues to do fine research into biological processes which
cause our symptoms, the other steadfastly refuses to recognize that research.
Are they aware of it? Do they read it? Do they even attempt to disprove it?
No.  The latter group simply insists that CBT & graded exercise
effectively treat CFS, ­ but ask them to define CFS  and you will find that
they consider it a somatization disorder, F48 in the ICD-10. Some do admit
that there are cases which even their treatments do not work. Subtle
innuendo - ­those confounding patients do not want to get better.  No
consensus; flat out disagreement as to the nature of the disease.

A particularly offensive, and oft used explanation for wanting to stay ill is
"secondary gain". Anyone with a passing familiarity with Taoisim will realize
that that philosophy posits that there is some good to be found in any
circumstance. Q.E.D. there has to be some secondary gain.  Many learn
from illness. "Tuesdays with Morrie" makes that plain. But does that mean that
Morrie wanted to have Lou Gerhig's disease to enrich but shorten his life?

Attempting to come to a consensus between two opposing groups was a mistake
and is at best questionable scientific method.  Science has nothing to do with
a democratic vote.

The failure of the '94 criteria has led the CDC, which has decided to broaden
the definition further.  This is outrageous.  One of the principals in the CBT
& GET School, Judith Prins, already shortened the '94 criteria in her
writings. Using a little footnote she acknowledged that she had eviscerated
the '94 criteria. Yet in subsequent writings she referred to that previous
paper's version of the '94 criteria.

No. It's time to adopt the Canadian Criteria, which at least is written by
clinicians who have long dealt with those suffering from the malady once known
as myalgic encephalomyelitis.  The further one gets from actual case studies,
the further one gets from finding a way to ease suffering.  It is
unacceptable for one group of theoreticians to ignore replicable scientific
studies and be considered the equal of those who approach the illness
scientifically. Government money should be spent to replicate those studies as
the CDC program seems incapable of coming up with much useful on its
own.  And when I say replicate, please do­ replicate. Do not fund studies such
as the one done by Freeman, which used different methodology. The first blood
volume study used the CR51 method, whereas Freeman used Evans blue dye.

So please play fair. You are playing with a lot of lives and a great deal of

I am thrilled to finally be able to stand up long enough to shower. My
treatments? Neurontin, valcyte (no more HHV6), daily infusions of saline to
increase blood volume, amantadine, various supplements including B-12 and
weekly self-administered shots. I've even learned to access my port-a-cath. In
over three years I've not had an infection.  I did try CBT & graded exercise.
The CBT is a useful adjunctive therapy. The graded exercise ­and indeed the
exertion necessary to get to the CBT classes ­caused a relapse.

Jean Harrison
* * *
Thanks for making some good points, Jean!

Ampligen Update

Source: Philadelphia Business Journal
Date:   July 22, 2009
Author: John George

Hemispherx says FDA decision on Ampligen months away

Hemispherx BioPharma said Wednesday it does not expect a decision
on its new drug application for Ampligen - the company?s
experimental drug for patients with chronic fatigue syndrome
- from the Food and Drug Administration until the fall.

The Philadelphia biotechnology company had originally expected a
decision, under FDA guidelines, in late May.

The agency at that time informed Hemispherx it would need another
few weeks to make a ruling. The delay has now stretched into months.

Dr. William Carter, the president and CEO of Hemispherx, said
staffing problems at the FDA this year have resulted in the agency
missing deadlines for making final decisions on about 65 percent of
the new drug applications it has under review.

Carter, during a call with stock analysts Wednesday, said Hemispherx
has been in contact with the FDA since May and has been ''regularly
providing reports to different reviewers.' He said he doesn?t believe
Hemispherx will have to supply any additional documentation to the
agency before its renders its decision.

The company is continuing to talk with potential marketing partners
for Ampligen while the FDA review is ongoing.

Carter said the company expects to spend 'tens of millions of dollars'
on research initiatives studying the ability of Ampligen to boost the
effectiveness of influenza vaccines. Hemispherx has such studies
planned or under way in the United States, South America, Australia
and in the Pacific Rim.

(c) 2009 Philadelphia Business Journal

Statements of Concern about Psychotherapy and Exercise for CFS

Permission to Repost

Statements of Concern about Cognitive Behavioural Therapy and Graded
Exercise Therapy provided for the High Court Judicial Review of February

Margaret Williams

22nd July 2009
Over twenty renowned ME/CFS experts provided Statements in support of the
Judicial Review of the NICE Guideline on "CFS/ME" heard in February 2009 in
the High Court in London. They were specifically written in support of the
challenge to the NICE Clinical Guideline on "CFS/ME" and they express
concern about the recommendation by NICE that the only management of ME/CFS
should be CBT and GET (the same interventions that are the subjects of the
Medical Research Council's PACE Trial).
None of the Statements was accorded the recognition that they merit.
Extracts from those Statements (some of which were of considerable length)
are now being placed in the public domain in the interests of ME/CFS
sufferers and those who support and care for them.
•        "In my view, the Guideline is biased and over rigid in its
recommendations and will put a large number of ME sufferers at risk of harm
through its strong recommendations for the use of CBT and GET.  CBT is based
on the idea that somatoform disorders are maintained by abnormal or
unhelpful illness beliefs which lead to abnormal or unhelpful behaviour. The
first requirement for a somatoform diagnosis is that there be no physical
cause for the symptoms.  This is not the case in ME/CFS"
  (Malcolm Hooper,
Professor Emeritus of Medicinal Chemistry, University of Sunderland,
November 2007)
•        "Two forms of treatment…are CBT and GET.  CBT is a psychological treatment.  Its application in what is certainly an  organic disorder is basically irrational.  Its putative mode of action is based on the
proposition that patients with ME/CFS feel unwell because they have an
'abnormal illness belief', and that this can be changed with CBT.  It has
never been proven to be helpful in the majority of patients with ME/CFS. 
GET comprises a regime of graded exercise, increasing incrementally over
time.  It has been almost universally condemned by most patient groups. A
number of patient surveys have shown it to be, at best, unhelpful, and at
worst, very damaging.  Its application is counter-intuitive, particularly
when one of the most debilitating and well recognised symptoms of ME/CFS is
post-exertional malaise which can put some patients in bed for days after
relatively trivial exertion
"  (Dr William Weir, Consultant Physician,
November 2007)
•        "The GDG has placed undue reliance upon a small number of RCTs that
were methodologically flawed because they did not adequately define the
patient population"  (Dr Terry Mitchell, formerly Consultant Clinical Lead
(CNCC) of the Norfolk, Suffolk & Cambridgeshire NHS ME/CFS Service, 23rd
June 2008)
•        "The predominance of psychologists / psychiatrists on the GDG is
entirely inappropriate and has led to a biased analysis in my opinion.  The
GDG has placed undue emphasis on a few UK clinical trials which support the
use of psychological treatments, however, these studies did not properly or
adequately define their patient population" (Dr Jonathan Kerr, Hon.
Consultant in Microbiology; Consultant Senior Lecturer in Inflammation;
Principal Investigator of the CFS Group, St George's University of London,
11th August 2008)
•        "You will see from my attached treatise that I consider that the
recommendation of CBT and GET as blanket treatments of 'clinically
excellent' first choice is extremely dangerous to patients.  I am concerned
that NICE claims that an adequate evidence base supports CBT/GET, when in
fact the Guideline Development Group (GDG) relied almost exclusively on a
handful of extremely controversial RCTs (random controlled trials).  I have
no doubt that patients in the research quoted by the GDG did not have
ME/CFS"  (Dr Irving Spurr, Newcastle ME Research Group; 12th August 2008)
•        "My overall impression reading the Guidelines for the first time
was one of alarm.  I will limit my comments to the deficiency which has the
greatest potential for harm to patients.  The NICE Guidelines do not make
any reference to the biomedical literature on ME/CFS
.  A physician who is
new to the field and who has not had time to read the thousands of paper
reporting measurable abnormalities in ME/CFS may get the impression that:
(1) Biomedical issues are irrelevant in ME/CFS and that (2) CBT and GET
actually make the core symptoms of people with ME/CFS better. A close read
of the literature reveals that none of the core symptoms of ME/CFS improve with CBT or GET. 
The recommendation for GET stems from the often quoted but
unproven assumption that deconditioning causes or exacerbates ME/CFS.  In
fact this assumption has been disproven
(Bazelmans et al 2001; Harvey et al
2008) and cannot therefore be used as a basis for treatment. Informed
consent is an ethical requisite in the practice of medicine.  Informed
consent requires that patients embarking on any therapy be told the
potential benefits and risks of the therapy being recommended. Meeting this
legal standard in ME/CFS requires that patients be told about the potential
benefits and risks of CBT/GET.  If patients are being coerced to believe what is not true, psychological trauma can result.  If patients are pushed
to increase activity beyond their capabilities, exacerbation of symptoms can
be expected.  The NICE Guidelines are biased towards a particular model of
CBT/GET that is widely viewed as ineffective and potentially unethical"  (Dr
Eleanor Stein, Consultant Psychiatrist, Calgary, Alberta, Canada, 12th
August 2008)
•        "(Graded exercise therapy) is not therapy – it is simply the
enforcement of an opinion rather than a treatment based upon any scientific
of a patient's pathology and treatment of that pathology.  I
believe that those who developed (the) graded exercise programme as a valid
treatment of ME have already been soundly criticised to the Courts.  I also
believe scientific evidence that such a programme is against the best
interests of ME patients has already been presented. The benefit of such a
programme is to the interests of the insurance industry and not the
patient.  Graded exercise programmes may be significantly dangerous to many of these ME patients" (Dr Byron Hyde, Clinician specialising in ME, having
examined over 3,000 patients between 1984 – 2008; Ottawa, Canada; 15th
August 2008)
•        "(The GDG) produced a Guideline that recommends CBT and GET as the
prime treatment yet there is in fact published evidence of contraindication
/ potential harm with GET.  This has been published by independent
researchers (e.g. Peckerman et al).
  The NICE GDG claims that CBT/GET are
supported by significant research.  In fact the GDG relied almost
exclusively on specious reports which are unproven"
(Dr Derek Enlander,
Virologist specialising in ME/CFS; formerly Assistant Professor at Columbia
University and Associate Director of Nuclear Medicine at New York
University; Physician-in-Waiting to the UK Royal Family and to members of HM
Government when they visit New York; 18th August 2008)
•        "I regard the continuing aura of disbelief surrounding the illness and mainly emanating from the psychiatrists as detrimental to both medical
progress and the interests of sufferers"  (Dr Nigel Speight, Consultant Paediatrician specialising in ME/CFS; 20th August 2008)
•        "It is with regret that I note that the NICE Guidelines do not take
into account recent developments in the management of ME.  They lean towards
a psychological and psychiatric basis, when it is now recognised that there
are a large number of medical problems associated with ME.  Recent studies
on genetics, the central nervous system, muscle function and persistent
infections have shown that there is a great deal of medical information
available with regard to the management of ME"
  (Dr Terry Daymond,
Consultant Rheumatologist and recently Clinical Champion for ME for the
North-East; 22nd August 2008)
•        "Research from the 'organic school' identified many pathophysiological abnormalities in patients with ME/CFS resulting from
dysfunction in a number of vital control systems of the body such as the central nervous system, the autonomic nervous system, the endocrinological
system and the immune system. The attitude of the 'psycho-social' school continues to be to largely ignore this research.
  It seems they can only
maintain their hypothesis by discouraging the search for an organic basis
and by denying the published evidence, which they are certainly doing.  This
unseemly battle of ideas has been settled politically by proclamation and
manipulation, not by science
, and not by fair and open means. CBT and GET
appear to be based on the rationale that patients with CFS/ME have 'faulty'
belief systems concerning the 'dangers' of activity, and that these aberrant
beliefs are significant perpetuating factors. If CBT to 'correct' these
'false' beliefs can be combined with a graded exercise programme to
re-condition these patients, it is virtually promised that a significant
proportion of them will improve both their attitude and their physical
functioning, and thus cure their illness. Using CBT, patients are therefore
to be challenged regarding their 'aberrant' thoughts and expectations of
relapse that the 'psycho-social school' psychiatrists believe affect symptom
improvement and outcomes.  Cognitions concerning fatigue-related conditions
are to be addressed; these include any alleged 'over-vigilance to symptoms'
and reassurance-seeking behaviours, and are to be dealt with using
re-focusing and distraction techniques.  It is when a therapy such as CBT
begins to interfere with the natural warning systems, of which both pain and fatigue are a part, that the increased risks arise
. In particular,
musculo-skeletal pain and fatigue have essential function in modulating
activity when the body is in a state of disease as in ME/CFS.  NICE,
however, recommends over-riding this essential safety-net, thus the risk of
serious harm is increased in this situation of simultaneous activity and
symptoms denial.  This will become a more serious risk in patients with more
severe ME/CFS.  The Guideline does not indicate how the clinician can tell
whether patients' beliefs concerning their symptoms are aberrant and/or when
the symptoms accurately point to the underlying state of the disease
process" (Dr Bruce Carruthers, Consultant Physician, Vancouver, Canada, 29th
August 2008)
•        "There have been only five trials of CBT with a validity score
greater than 10, one of which was negative for the intervention; and only
three RCTs of GET with a validity score greater than 10.  The total number
of available trials is small; patient numbers are relatively low; no trial
contains a 'control' intervention adequate to determine specific efficacy,
and their results are relatively modest.  In addition, some of the studies
(particularly those on GET) have used the Oxford criteria for diagnosis, a
rubric which allows selection of patients with chronic fatigue states and
which do not necessarily exclude certain psychiatric disorders, raising the
question of the applicability of the results of these studies to the many
patients with specific biomedical symptoms and signs consistent with myalgic
encephalomyelitis.  Again, the heterogeneity of the trials, the potential
effect of publication or funding bias for which there is some evidence, and
professional doubts about the evidence base for some behavioural therapies
themselves give grounds for caution as regards the usefulness of (CBT/GET). 
A commentary in the BMJ (Bolsover 2002) is particularly relevant: 'Until the
limitations of the evidence base for CBT are recognised, there is a risk
that psychological treatments in the NHS will be guided by research that is
not relevant to actual clinical practice and is less robust than is
claimed'. Indeed, a large body of both professional and lay opinion
considers that these essentially adjunctive techniques have little more to
offer than good medical care alone"  (Dr Neil Abbot, Director of Operations,
ME Research UK; Hon Research Fellow, Department of Medicine, University of
Dundee, 29th August 2008)
•        "The overall flavour of the Guideline is to lump together all
patients with 'medically unexplained fatigue', from relatively mild to
profoundly disabling illness and to treat all patients with a standard
approach of gradual reconditioning and cognitive behavioural modification. 
By lumping such a heterogeneous mix of patients…patients with CFS or ME are
left with very limited options, and little hope.  In addition, this document
proscribes immunological and other biologic testing on patients with (ME)CFS
in the UK, despite the evidence in the world's medical literature that such
testing produces most of the biomedical evidence of serious pathology in
these patients.  Equally unfortunate is the GDG's recommendation for
behavioural modification as the single management approach for all
'medically unexplained fatigue'.  This month we participated in the
International Conference on Fatigue Science in Okinawa, Japan.  Dr Peter
White of the UK presented his work using behavioural modification and graded
exercise.  He reported a recovery rate of about 25%, a figure much higher
than seen in US studies in (ME)CFS and, even if possible, simply not hopeful
enough to the 75% who fail to recover" (Professors Nancy Klimas and Mary Ann
Fletcher, University of Miami; 13th September 2008) 
•        Attached as an appendix to their Statement was a separate Summary
of Current State of Understanding of (ME)CFS), from which the following
quotations are taken: "Many of the symptoms of (ME)CFS are inflammatory in nature.  There is a considerable literature describing immune activation in
(ME)CFS. Overall the evidence has led workers in the field to appreciate
that immunologic abnormalities are a characteristic of at least a subset of
(ME)CFS and that the pathogenesis is likely to include an immunologic
component.  Fulcher and White (2000) suggest a role for deconditioning in
the development of autonomic dysfunction and overall level of disability in
(ME)CFS patients.  On the other hand, Friedberg et al (2000) suggest the
long duration (ME)CFS subjects are more likely to have symptoms suggestive
of chronic immune activation and inflammation
. We are currently working with
investigators at the Centres for Disease Control and the University of
Alberta looking at the mediators of relapse after exercise challenge using
gene expression studies, neuroendocrine, immune and autonomic measures"
•        "My main concern about the NICE document is that what must be great
uncertainty in both costs and particularly in quality of life difference is
not allowed for" (Martin Bland, Professor of Health Statistics, University
of York, 17th September 2008)
•        "The guideline is dominated by positive and largely uncritical
recommendations for CBT and GET. However, the guideline plays down the fact that patient experience has consistently reported that significant numbers of people with ME/CFS find these approaches to be either unhelpful or, in the case of GET, makes their condition worse. Some of the hospital-based
services are not being physician-led but 'therapist-led'.  In some cases
people are now being given little more than a 'therapist-led' management
assessment followed by an offer of CBT and/or GET.  I received some very
unhappy patient feedback on this type of service on Saturday 11th October
(2008) in Colchester, Essex, where great dissatisfaction was expressed by
many members of the audience who attended the ME Association's 'Question
Time' meeting"  (Dr Charles Shepherd, Medical Adviser, ME Association, 24th
October 2008)
•        "I am a consultant immunopathologist and before retirement worked
at St James' University Hospital, Leeds.  A key area of my professional
interest was and remains myalgic encephalomyelitis and I have carried out
research into the disorder.  For a number of years I ran clinics
specifically for patients with ME.  In my opinion NICE guidelines
overemphasise the usefulness of CBT and GET to the detriment of patients.  I
have no hesitation in stating that in my opinion, the situation for ME/CFS
patients is worse, not better, since the publication of the NICE Guideline"
(Dr Layinka Swinburne, Leeds, 22nd October 2008)
•        "As my clinical freedoms were progressively eroded, it meant that I
was becoming ineffective and indeed possibly dangerous as a practitioner. 
All that patients could be offered was CBT coupled with GET, which I
consider not to be appropriate
for many of my patients and in the case of
GET potentially damaging for some" (Dr Sarah Myhill, General Practitioner
specialising in ME/CFS, Powys; Secretary of the British Society for
Ecological Medicine, 10th November 2008).

Tuesday, July 21, 2009

A note of caution about the word "somatic"


I've noticed for some time that various people have been using the term 'somatic' as if it signified a 'psychosomatic' or 'psychogenic' condition.

This is incorrect. The OED definition of 'somatic' is "of or relating to the body, **especially as distinct from the mind**" (my italics) The word comes from the Greek 'soma' meaning 'body'.

Even when proponents of 'psychogenic' explanations (it's in your mind, you're imagining it, misinterpreting it, faking it, caused it by your own beliefs etc. etc. etc.) use the term 'somatic illness' they actually do mean an illness of the body. They may then claim this somatic (or bodily illness) is caused by psychological dysfunction, but the word 'somatic' does not mean "illness caused by psychological dysfunction". It merely means illness of a body, or a bodily illness.

It is important that this word is used correctly, especially when people write to the media, government, the medical establishment etc. Otherwise we are in danger of seeing apparent objections published, from advocates, to saying ME/CFS is a bodily illness, purely because someone has used the word 'somatic' incorrectly!

Best wishes
Angela Kennedy


Healthy Controls needed for DC research -- paying $400

This was posted on the CFIDS Assoc. Facebook page on July 20 by user
Dale Robertson-

The Georgetown University located in washington Dc is conducting a
very important study reguarding CFS. They have identified a specific
set of proteins found in the cerebral spinal fluid in patients with
CFS. These proteins are not found in healthy people and maybe the
actual pathology of this disease itself.Upon enrollment I was informed
that they are in desperite need of healthy control subjects that are
to participate with me. I am urging each and every one of you to try
to recruit a healthy volunteer as these findings may very well lead to
a cure of this horrific illness. Study participeints will be required
to stay in the hospital for a total of three days where they will
undergo testing and will be paid in the amount of $400.00 for their
time. I will post a link below for those of you who maybe interested.
Remember, it is up to us to make a difference! Lets solve CFS!!!