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What is ME? What
is CFS?
INFORMATION FOR CLINICIANS AND LAWYERS ( December 2001)
History and Classification of Myalgic
Encephalomyelitis (ME)
Description of ME
Symptoms Documented in ME
Evidence of Abnormalities in ME
Precipitating Factors in ME
Physical Signs Found in ME
Changing Definitions: History of Chronic
Fatigue Syndrome (CFS)
How "CFS" Displaced ME in the UK
The UK Chief Medical Officer’s Report on
"CFS/ME"
Caution needed by Clinicians and Lawyers
Conclusion
History and Classification of
Myalgic Encephalomyelitis
Myalgic Encephalomyelitis (ME) has been documented in the medical literature
from 1934. The Wallis description of ME (not Chronic Fatigue Syndrome, known as
CFS – see below) was in 1957. Sir Donald Acheson’s (a former UK Chief Medical
Officer) major review of ME was in 1959. In 1962, the distinguished neurologist
Lord Brain included it in the standard textbook of neurology. ME has been
formally classified by the World Health Organisation as a neurological disorder
in the International Classification of Diseases (ICD) since 1969 (ICD-8: Vol I:
code 323, page 158; Vol II (Code Index) page 173). On 7th April 1978 the Royal
Society of Medicine held a symposium on ME at which ME was accepted as a
distinct entity.
The symposium proceedings were published
in The Postgraduate Medical Journal in November that same year. The Ramsay case
description was published in 1981. Since 1989, the Medical Information Service
of the British Library has produced quarterly updates on the disorder: these
updates (known as CATS, or Current Awareness Topics) compile published
international research and clinical evidence about the condition and contain
abstracts of published articles.
The Centres for Disease Control (the US
federal agency charged with the containment of diseases and known
internationally as the CDC) designates it for funding status as "A serious
legitimate diagnosis CDC PRIORITY 1 disease of public health importance".
ME remains classified in the current ICD as a neurological disorder (ICD 10.
G.93.3) and the World Health Organisation has confirmed that there are no plans
to reclassify it as a psychiatric disorder in the next revision of the ICD (due
in 2003). Chronic Fatigue Syndrome (CFS) is listed in ICD-10 as a term by which
ME is also known, as is the term Postviral Fatigue Syndrome (PVFS). The term "CFIDS",
or Chronic Fatigue and Immune Dysfunction Syndrome, is used by some groups in
the US.
Description of Myalgic
Encephalomyelitis
ME / ICD-CFS is a serious, disabling and chronic organic (ie. physical not
mental) disorder: 80% of patients do not get better. According to US statistics
provided by the Centres for Disease Control (CDC), only 4% of patients had full
remission (not recovery) at 24 months. International expert Daniel Peterson is
on record as stating about ME / ICD-CFS: "In my experience, (it) is one of the
most disabling diseases that I care for, far exceeding HIV disease except for
the terminal stages".
American researchers found that the quality of life is particularly and uniquely
disrupted in ME / ICD-CFS and that all participants related profound and
multiple losses, including loss of jobs, relationships, financial security,
future plans, daily routines, hobbies, stamina and spontaneity. Activity was
reduced to basic survival needs for some subjects. The researchers found that
the extent of the losses experienced by sufferers was devastating, both in
number and intensity.
Australian researchers found that patients with this disorder had more
dysfunction than those with multiple sclerosis, and that in ME / ICD-CFS the
degree of impairment is more extreme than in end-stage renal disease and heart
disease, and that only in terminally ill cancer and stroke patients was the
sickness impact profile (SIP) greater than in ME /ICD-CFS.
The incidence of ME / ICD-CFS is known to be rising: in April 1994, the
insurance company UNUM (one of the largest disability insurers) reported that in
the five years from 1989 - 1993, mens’ disability claims for CFS increased 360%,
whilst womens’ claims for CFS increased 557%. No other disease category
surpassed these rates of increase.
In order of insurance costs, ME/ICD-CFS came second in the list of the five most
expensive chronic conditions, being three places above AIDS. At the Fifth
American Association of Chronic Fatigue Syndrome International Research and
Clinical Conference held in January 2001 in Seattle, the Associate Director of
the University of Washington’s CFS Research Centre (Dr N Afari) confirmed that
the incidence is indeed rising. Of potential significance is the fact that
American researchers have demonstrated that in ME / ICD-CFS, a particular
pathway in the body which is affected by viruses can also be affected by
chemicals.
The strike rate is higher than multiple sclerosis. Comparisons have been made
between the prevalence of ME /ICD-CFS and MS in the UK, in the USA and in
Australia and have been estimated to be three times, twice and equivalent
respectively. Prevalence estimates in Britain vary by a factor of 8, which is a
reflection of the problem of definition.
In the UK it is generally believed that at least 300,000 suffer from the
disorder; some psychiatrists, however (see below), having themselves broadened
the case definition to include psychiatric disorders, claim that there are over
one million "CFS" sufferers in the UK, of which they assert 75% have a
psychiatric disorder.
Estimated direct NHS costs are said to be from £180 million to just over £1
billion per annum, depending on the choice of prevalence estimates, with total
costs ranging from £879 million to nearly £16 billion.
ME/ ICD-CFS is a multi-system disorder, one form of which can be associated with
enteroviruses related to the poliomyelitis virus . Virally-induced ME used to be
known as "atypical poliomyelitis". There are acknowledged similarities and
overlaps between ME and the post-polio syndrome (PPS), particularly concerning
the nature and source of the pathophysiology, including virological evidence
that enteroviruses persist in the human central nervous system.
Specifically, the mechanism of the
incapacitating exhaustion is identical in the two conditions (ie. in ME and
PPS). In ME there are chronic sequelae and the effects may be neurological,
hormonal, autoimmune and myalgic, which may include the myocardium.
Symptoms documented in Myalgic
Encephalomyelitis
In ME, symptoms are seemingly without end. There is a remarkable variability of
signs and symptoms from day to day and even from hour to hour: Hyde and Jain
(quoting Pellew) describe this variability: "A patient examined in the morning
might have nystagmus, which would disappear at midday, recur later, disappear
later and recur the next day".
This waxing and waning in the same patient in the same day is typical of almost
all findings in ME / ICD-CFS and may lead to medical scepticism.
The most apparent features are extreme post-exertional muscle fatiguability,
which is quite distinct from chronic "fatigue" or tiredness, together with
recurrent nausea and profound, incapacitating malaise. It is striking how
consistent are the symptoms that characterize this condition. The exhaustion
experienced by patients is extreme:
"the disabling weakness and exhaustion a patient with ME / ICD-CFS experiences
is so profound that "fatigue" is probably an insult".
ME commonly starts with abdominal pain and diarrhoea, together with a persistent
headache and / or vertigo, with a stiff neck and back, together with generalised
myalgia, described as intense and burning. Muscles are tender to palpation and
muscle spasm is not uncommon. There may be severe, intractable pain in
particular groups of muscles, most notably in the neck and in the shoulder and
pelvic girdles: the more severely affected are unable to stand unsupported for
more than a few minutes. There is sometimes segmental pain in the chest wall.
In the more severely affected, dizziness is a particularly striking and chronic
feature, as is persisting dysequilibrium and ataxia, with patients frequently
bumping into things and becoming bruised. There is impaired neuromuscular
coordination, particularly with fine finger movements. In the severely affected,
there may be difficulty with swallowing; choking fits are not infrequent. There
may be difficulty with voice production, particularly if speaking is sustained.
There may be seizures, although these are found only in the most severe cases.
In the most severe cases, photophobia and hyperacusis are common, as is
tinnitus; often there is parasthesia. Hypersomnia is prevalent, especially in
the early stages of the disorder; this may be replaced by reversed sleeping
patterns, with vivid and disturbing dreams; unrefreshing sleep is common.
Abdominal pains often recur; especially in the severely affected, there are
usually chronic problems with diarrhoea and frequency of micturition, including
nocturia. Bladder and bowel control may be insecure.
Cardiac arrythmias are very common, with pronounced tachycardia and an
uncomfortably pounding heart; there may be paroxysmal attacks of angina-like
chest pain. Cardiac pain is a recognised feature: patients may be convinced they
are suffering a heart attack. Myocarditis was a common symptom in an analysis of
1,000 ME/ ICD-CFS patients seen in Glasgow, where clinicians were struck by the
often-occurring association of patients with ME/ICD-CFS with acute chest pain
resembling coronary thrombosis.
A significant number of cases of Syndrome X strongly resemble ME / ICD-CFS
clinically, and nuclear magnetic resonance spectroscopy studies of skeletal
muscle in patients with Syndrome X show abnormalities that are identical to
those found in patients with ME / ICD-CFS.
Syndrome X is characterised by typical anginal pain with a normal coronary
angiogram: in both Syndrome X and ME / ICD-CFS, blood supply to the heart muscle
seems to be going haywire, but in Syndrome X there is desensitivity of the cell
endothelium, whilst in ME / ICD-CFS there is heightened sensitivity of the cell
endothelium. Syndrome X has been defined as a cluster of symptoms secondary to
resistance of insulin-mediated glucose uptake; it has been seen in association
with increased risk for coronary heart disease due to enhanced growth and
proliferation of arterial smooth muscle cells and highly elevated levels of
cholesterol.
In the more severely affected, palindromic arthropathies regularly recur;
spontaneous periarticular bleeds are frequent, especially in the fingers, which
become swollen and painful, making the patient appear even more clumsy.
Pancreatitis is not uncommon and may cause acute, severe pain: pancreatic
exocrine insufficiency leads to malabsorption, which is a well-recognised
feature found in the more severely affected; some patients have almost
non-existent pancreatic exocrine function. Some patients have been shown to have
achlorhydria.
Food intolerance is a prominent feature across all degrees of severity: multiple
sensitivities to normal foods and household chemicals (including perfumes,
chemical treatments of furniture and carpets such as flame-retardants and glues
in chipboard), petrol and agricultural chemicals are frequent. Intolerance to
alcohol and to medicinal drugs, particularly to antidepressants, is virtually
pathognomonic. Patients have to be cautious about all drugs but especially those
acting on the central nervous system (ie. anaesthetics), as there is an
increased occurrence of adverse reaction.
ME affects not only the central nervous system but the autonomic and peripheral
nervous systems as well. Sympathetic nervous system dysfunction is integral to
ME / ICD-CFS pathology and includes blurred and double vision, with difficulty
in focusing and visual accomodation; eyes may be dry and eyelids are often
swollen and painful. Typical autonomic symptoms include alternate sweating and
shivering, with marked thermodysregulation. Patients experience orthostatic
hypotension and symptoms of hypovolaemia, with blood pooling in the legs and
insufficient blood flow to the brain: patients may feel faint, shaky and
nauseous; they can be tearful and observably pale and they may experience severe
distress.
Heightened sensory input awareness might be called an "acid test" for ME /
ICD-CFS: one world expert claims that it is possible to make a diagnosis by
taking a patient into a shopping mall (he calls it the Mall Test) because with
all the lights, noise, echoes, smells, movement and confusion, a sufferer would
be ready to explode.
In the more severely affected, commonly there is difficulty with breathing, with
sudden attacks of breathlessness and dyspnoea on minimal effort; the
administration of oxygen may be necessary. Rashes may occur; mouth ulcers may be
recurrent and may be painful and severe to the extent that speaking and eating
may be affected. Hands and feet are frequently cold, blanched and / or purple,
with painful vascular spasms seen in the fingers.
Vascular headaches are common and recurring. In females, ovarian-uterine
dysfunction is not uncommon; in males, prostatitis and impotence may occur. Many
patients can walk only very short distances and require a wheelchair. There is
difficulty with simple tasks such as climbing stairs and dressing.
Problems with short-term memory are common: cognitive impairment is significant
and includes difficulty with memory sequencing, processing speed, word
searching; dyslogia, spatial organisation, calculation (dyscalculia), and
particularly with decision-making. In relation to the degree of cognitive
impairment, American researchers found that "the performance of the CFIDS
patients was sevenfold worse than either the control or the depressed group.
These results indicated that the memory deficit in CFIDS was more severe than
assumed by the CDC criteria. A pattern emerged of brain behaviour relationships
supporting neurological compromise in CFIDS". unncharacteristic emotional
lability is very common; there may be an increased irritability. Patients are
often understandably anxious and afraid.
There may be significant and permanent damage to skeletal or cardiac muscle as
well as to other end-organs including the liver, pancreas, endocrine glands and
lymphoid tissues, with evidence of dysfunction in the brain stem. Injury to the
brain stem results in disturbance of the production of cortisol (required for
stress control) via damage to the hypothalamus and to the pituitary and adrenal
glands, and patients react extremely adversely to stress.
Cycles of severe relapse are characteristic and common, together with the
evolution of further symptoms over time. ME is rarely listed as the cause of
death, although after decades of illness, death from end-organ damage (mainly
cardiac or pancreatic failure) is known to occur. Suicide rates are high and
are said to be the most common cause of death in ME and to be related to the
current climate of disbelief and rejection of welfare support.
Evidence of abnormalities in ME
Despite beliefs and assertions to the contrary, in ME there is evidence of
inflammation of the central nervous system (CNS); that is what helps to
differentiate ME from other forms of CFS. There are many references in the
medical literature to inflammation of the CNS in ME and in ICD- CFS but such CNS
inflammation is not found in all variants of CFS. It is incorrect to deny the
existence of CNS inflammation in ME / ICD-CFS. In some cases of ME, as in
multiple sclerosis, there is evidence of oligoclonal bands in the cerebrospinal
fluid.
It is accepted by the most experienced ME clinicians that some degree of
encephalitis has occurred both in patients with ME and in those with post-polio
syndrome: the areas chiefly affected include the upper spinal motor and sensory
nerve roots and the spinal nerve networks traversing the adjacent brain stem
(which is always damaged). In nearly every patient there are signs of disease of
the central nervous system. Recent research continues to support neurological
involvement.
There is a substantial literature on the neuroendocrine dysfunction which has
been demonstrated in ME / ICD-CFS, particularly the known dysfunction of the
hypothalamic-pituitary-adrenal axis (HPA axis), leading to a disordered stress
response. There is mounting international evidence that ME / ICD-CFS is an
autoimmune disorder, with similarities to systemic lupus erythematosus. Evidence
of antilamin antibodies has been found in the blood of ME / ICD-CFS patients:
antibodies against this protein are proof of autoimmunity and of damage to brain
cells. The occurrence of autoantibodies to an intra-cellular protein like lamin
B1 provides laboratory evidence for an autoimmune component in ME / ICD-CFS.
In the UK, patients with autoimmune features and neurological signs and symptoms
are usually the most sick and as such they are excluded from studies of "CFS" or
chronic fatigue undertaken by psychiatrists, so the results of UK studies from
which such patients are excluded are not representative of the true situation.
A particularly important piece of research in these patients has demonstrated
sensitivity of the vascular endothelium to acetylcholine (a major
neurotransmitter and vascular dilator) and this finding may have implications
for many other cholinergic pathways (which are extensive throughout the body).
In ME / ICD-CFS there is evidence of disruption in ion channels in the cell
membranes; changes in ion channel function from time to time offer a rational
basis to explain the fluctuating symptoms, and such ion channel changes are
known to be induced by physical activities, stress and fasting.
If sodium channels are blocked in the open mode, this causes entry of sodium
into neural tissues and muscles. This ingress of sodium is followed by water,
which in turn leads to swelling of the neural tissues, a phenonmenon observed
both electron microscopically and by laser scanning microscopy. Acquired ion
channel abnormalities in the myocardium could explain the pathogenesis of
Syndrome X and may form the basis of cardiac dysfunction in both Syndrome X and
in ME / ICD-CFS.
Australian researchers have found that total body potassium (TBK) is
significantly lower in patients with ME / ICD-CFS; they suggest that abnormal
potassium handling by muscles in the context of low overall body potassium may
contribute to muscle fatigue in this disorder. Burnett reports that there is a
reduced flux of potassium across the cell membrane (which fits in with a
channelopathy) and that patients will feel more ill the lower the potassium
levels. TBK results for ME / ICD-CFS patients have also been shown by others to
be significantly lower than those for controls; this fits with other metabolic
abnormalities in these patients, such as impaired water metabolism.
There is convincing evidence that patients with ME / ICD-CFS reach exhaustion
more rapidly that normal subjects: the use of 31 P-nuclear magnetic resonance
(31 P-NMR) has now provided positive evidence of defective oxidative capacity in
such patients.
These findings show that there is a continued loss of post-exertional muscle
power (giving an additional loss of power), with delayed recovery for at least
24 hours, whereas sedentary controls recovered full muscle power after 200
minutes. A genetic component to ME / ICD-CFS is strongly suggested by HLA
phenotyping analysis in the laboratory of Paul Terasaki at UCLA School of
Medicine.
Terasaki is one of the world’s leading
experts in HLA typing and he found 46% of ME / ICD-CFS patients were HLA-DR4
positive. However, in a small study of only 58 patients, Wessely (a UK
psychiatrist – see below) found no association between HLA genotype and CFS and
claims there is no significant difference in HLA frequencies between patients
and controls.
In the February 2000 issue of The American Journal of Medicine, Anthony Komaroff
(Assistant Professor of Medicine at Harvard and a world expert on this disorder)
summarised key points in an Editorial: "Many controlled studies have compared
patients with age-matched and gender-matched healthy control subjects. Objective
biological abnormalities have been found significantly more often in patients
with the syndrome than in the comparison groups. The evidence indicates
pathology of the central nervous system and immune system. What is the evidence
of central nervous system pathology? Magnetic resonance imaging has revealed
areas of high signal in the white matter.
Single photon emission computed tomography (SPECT) signal abnormalities also are
found more often in patients, abnormalities like those seen in patients with
encephalopathy due to the acquired immunodeficiency syndrome (AIDS) and unlike
the findings in patients with depression. Autonomic nervous system testing has
revealed abnormalities of the sympathetic and parasympathetic systems that are
not explained by depression or physical deconditioning.
Studies of hypothalamic and pituitary function have revealed neuroendocrine
abnormalities not seen in healthy control subjects and opposite to those found
in depression. There is considerable evidence from different investigators,
using different technologies and studying different groups of patients, of a
state of chronic immune activation.
In summary, there is now considerable evidence of an underlying biological
process in most patients (which) is inconsistent with the hypothesis that (the
syndrome) involves symptoms that are only imagined or amplified because of
underlying psychiatric distress. It is time to put that hypothesis to rest".
Precipitating Factors
Precipitating factors are acknowledged to include stress, exposure to toxic
chemicals, and physical trauma - particularly a motor vehicle accident.
There is convincing evidence that when combined with physical trauma, chemical
or biological insult, stress potentiates the condition and that the disorder may
be due in part to multiple chemical and / or biological exposures which have
been shown to increase the permeability of the blood brain barrier (BBB),
leading to a significant brain injury. Evidence of BBB breakdown in ME / ICD-CFS
was presented at the international conference held in London in April 1999:
scientists in Israel have shown that severe stress (physical or mental) can
produce breakdown of the BBB; if that barrier is broken, small amounts of
substances which are normally outside the brain could produce brain injury.
It is postulated that in the case of ME / ICD-CFS, a person already under
physical or mental stress is exposed to an agent (viral or chemical) which
crosses the BBB, enters the brain, and produces long-term dysfunction.John
Dwyer, Professor of Medicine at the University of New South Wales, Australia,
states that his team has seen ME / ICD-CFS stimulated by vaccination and that
they have seen it both with vaccinations such as those for influenza and also
with the use of material which is not live, such as that in a tetanus toxoid
injection.
The disorder is known sometimes to occur or worsen after anaesthetics, and to be
related to some infections (both viral and bacterial). There is a considerable
literature on the viral aspects of the disorder, the most implicated viruses
being Coxsackie B and Human Herpes Virus 6 (HHV6). HHV-6 has been found in
patients suffering from ME / ICD-CFS and also in MS; it has also been linked to
other autoimmune conditions such as systemic lupus erythematosus (SLE or lupus).
Physical signs found in ME
In cases of severe ME there are definite physical signs indicative of physical
illness and not of abnormal illness behaviour. Some of these signs are often
present in less severely affected cases but in the UK are dismissed or
trivialised in order to comply with the currently-favoured psychiatric
definition of CFS. Not all patients have all signs, but throughout the ME
literature, the following are common in the sickest patients.
Observable signs include a typically swinging low-grade temperature, nystagmus;
sluggish visual accommodation; abnormality of vestibular function with a
positive Romberg test; abnormal tandem or augmented tandem stance; abnormal
gait; hand tremor; incoordination; cogwheel movement of the leg on testing;
muscular twitching or fasciculation; hyper-reflexia without clonus; facial
vasculoid rash; vascular demarcation which can cross dermatomes with evidence of
Raynaud’s syndrome and / or vasculitis; mouth ulcers; hair loss; a labile blood
pressure (sometimes as low as 84/48 in an adult at rest); flattened or even
inverted T-waves on 24 hour Holter monitoring (a standard 12 lead ECG is usually
normal); orthostatic tachycardia; shortness of breath (patients show significant
reduction in all lung function parameters tested); abnormal glucose tolerance
curves; liver involvement (an enlarged liver or spleen may not be looked for in
ME, so missed) and destruction of fingerprints: (atrophy of fingerprints is due
to perilymphocytic vasculitis and vacuolisation of fibroblasts ).
In his Testimony before the FDA Scientific Advisory Committee on 18th February
1993, Dr Paul Cheney (Professor of Medicine at Capital University; Medical
Director of the Cheney Clinic, North Carolina and one of the world’s leading
exponents on ME /ICD-CFS) testified 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 self".
People with ME are permanently excluded from being blood donors.
Twenty-five per cent of sufferers are severely affected and are either house or
bed bound; they are invisible and for the most part, they are ignored and
abandoned to their own fate.
A major Report by the charity Action for ME found that 77 % of sufferers
experienced severe pain; over 80% had felt suicidal as a result of the illness;
70% are either never able, or are sometimes too unwell to attend a doctor’s
clinic; 65% (nearly two out of three) have received no advice from their GP on
managing this illness; 80% of those who are currently bedridden by ME report
that a request for a home visit by a doctor has been refused; many people do not
receive state benefits to which they are clearly entitled.
Despite all this verifiable and authenticated international research, much of
the current perception of ME, both medical and lay, is beset by confusion and
misinformation.
There are still doctors who dismiss the condition as non-existent and too many
sick children are still being forcibly removed from their parents and placed in
institutional care where they are forced to undergo inappropriate exercise
regimes under the care of psychiatrists.
Very recently, there have been two tragic ME cases involving children: in one
case social workers, accompanied by uniformed police officers, appeared
unannounced on the doorstep to take away a child under a Child Protection Order;
the other child had been made a Ward of Court.
In July 2001, the appalling treatment of children with ME / ICD-CFS was the
subject of a major feature written by the Countess of Mar in The Daily
Telegraph. Cases such as these have been only too common since the late 1980s:
support for families in such situations is available from the mother of a child
who was compelled to go to the High Court to stop the local Council and NHS
Healthcare Trust from using child protection procedures to force her sick son
into psychiatric treatment without his parents’ consent and in disregard of
competent but differing medical opinion (telephone: Val Broke Smith: 01564 -
778649).
Refusal by some doctors to accept what is known about ME /ICD-CFS may raise the
question of whether or not such doctors are in breach of their contract of
employment if that contract requires them to keep abreast of advancing medical
knowledge. Guidance issued by the General Medical Council (GMC) requires that
doctors "must observe and keep up to date with the laws and statutory codes of
practice which affect your work." The law cannot be used to enforce alternative
treatment on a patient already receiving competent medical treatment just
because doctors disagree.
The fact that so many doctors do not keep reasonably up-to-date about ME /
ICD-CFS has enormous implications for patients.
Changing Definitions:
History of Chronic Fatigue Syndrome (CFS)
In the US in the late 1970s and 1980s there seemed to be a remarkable rise in
incidence of a condition indistinguishable from ME, with manifestations of
serious neuro-immune disease and profound incapacity, to the extent that the
powerful insurance industry became alarmed. The insurance industry was concerned
that, because there is no National Health Service in the US: "the field could
change from an epidemiological investigation into a health insurance nightmare".
The result was a determination to suppress the true symptomatology and to
construct a new case "definition" for which insurers could not reasonably be
liable: the condition was henceforth to be called ‘chronic fatigue syndrome’ or
CFS and emphasis was to be on chronic "fatigue" as the primary symptom. The case
definition required every sign of organic illness to be excluded before the
diagnosis of "CFS" could be made. As a result, the view that patients were
clearly afflicted by serious neuro-immune illness was to be strenuously
down-played for many years.
"CFS" did not come into existence until 1988. As a basis for sound scientific
research, it has been a disaster. "CFS" is not a single diagnostic entity and
"fatigue" is not a disorder, it is a symptom. The term "CFS" is now applied to a
heterogeneous group as a non-specific label which embraces many different
medical and psychiatric conditions in which tiredness and fatigue are prominent.
The first definition of CFS (1988 Holmes et al) concentrated on "fatigue"
persisting for at least six months; it expressly excluded the cardinal features
of ME which had been documented for decades despite the fact that ten years
earlier, the UK Royal Society of Medicine had accepted ME as a distinct
nosological entity.
In 1988 in the US, the eighteen strong panel of medical scientists and
clinicians charged with formulating a new case definition and new name could not
agree: two of the most experienced members refused to sign the final document
and withdrew from the panel because the proposed definition and new name were
too different from the ME with which they were so familiar. Those two members
were Dr Alexis Shelokov from the US and Dr Gordon Parish from the UK. Dr Parish
now lives in Scotland and is curator of the Ramsay Archive, which is possibly
the world’s largest collection of medical papers on ME which pre-date 1988.
How "CFS" displaced ME in the UK
At about the same time (1988) in the UK, psychiatrist Simon Wessely rose to
prominence.
Wessely leads a group of UK doctors, mostly but not exclusively psychiatrists,
who have colloquially become known as the " Wessely School". Wessely is now
Professor of Epidemiological and Liaison Psychiatry at Guy’s, King’s and St
Thomas’ School of Medicine, London and at The Institute of Psychiatry, where he
is Director of both the CFS Research Unit and the Gulf War Illness Research
Unit. He is well-known for his strongly-held beliefs that neither ME nor Gulf
War Syndrome exists, and that such patients are mentally, not physically, ill.
Since the late 1980s he and his close colleagues have assiduously attempted to
obliterate recorded medical history by insisting that there is no such disorder
as "ME", claiming that previous studies of ME "reflect those who seek treatment
rather that those who suffer the symptoms", even though those studies were
published in peer-reviewed prestigious medical journals and span over sixty
years.
Despite the fact that the International Classification of Diseases is approved
by all the countries who are part of the World Health Assembly, Wessely believes
the WHO got it wrong about ME, writing in the Lancet: "The inclusion in the
tenth revision of the International Classification of Diseases (ICD-10) of
benign myalgic encephalomyelitis as a synonym for postviral fatigue syndrome
under Diseases of the Nervous System seems to represent an important moral
victory for self-help groups in the UK. Neurasthenia remains in the Mental and
Behavioural Disorders chapter under Other Neurotic Disorders.
Neurasthenia would readily suffice for ME. Applying more stringent criteria for
CFS in the hope of revealing a more neurological sub-group succeeds only in
strengthening the association with psychiatric disorders. We believe this latest
attempt to classify fatigue syndromes will prevent many people from seeing the
world as it actually is".
In the ICD classification the section entitled "Mental and Behavioural
Disorders" (section F-48.0 subtitled "Other Neurotic Disorders") includes
"neurasthenia" and "fatigue syndrome". ME, CFS and PVFS are specifically
excluded from the psychiatric section F-48.
Wessely’s views of those afflicted by ME / ICD-CFS are well-known, and may be
summarised in just two illustrations:
"The description given by a leading (doctor) at The Mayo Clinic remains
accurate: ‘the doctor will see that they are neurotic and he will often be
disgusted with them’ " "There lies at the heart of CFS not a virus (or) immune
disorder, but a distortion of the doctor-patient relationship"
Wessely’s determination to eradicate ME as a legitimate medical entity seems
never to cease. Perhaps his most blatant attempt to change the WHO
classification from neurological to psychiatric can be found in his contribution
to the WHO Guide to Mental Health in Primary Care (November 2000) in which ME is
notoriously re-classified as a mental disorder.
Psychiatrists at King’s College Hospital and The Institute of Psychiatry are
designated as one of the WHO Collaborating Centres and as such are entitled to
use the WHO logo. Use of the WHO logo implies that contributions carry WHO
sanction, but in this particular instance, such is not the case and Wessely’s
actions brought forth international condemnation. The WHO has confirmed that
what Wessely published about the classification of ME in the Guide to Mental
Health in Primary Care did not carry WHO approval, stating "It is possible that
one of the several WHO Collaborating Centres in the United Kingdom presented a
view that is at variance with WHO’s position".
The present confusion has been compounded by the fact that the term "CFS" has
been included by the WHO in the latest revision of the International
Classification of Diseases as one of the terms by which ME has become known. In
practice, this has come to mean that when referring to "CFS", some doctors
(mostly some U K psychiatrists led by Simon Wessely) are talking about
psychiatric illness involving "chronic fatigue", whilst international experts
are talking about ICD- CFS, which is synonymous with ME.
It is important to be aware that published international research on CFS (as
distinct from UK psychiatric research on CFS) reflects patients who are likely
to have ME rather than psychiatric disorder. The essence of the confusion
concerns the use in the UK of the combined term "CFS/ME", given that "CFS" means
different things to different people.
On the one hand there is an extensive published record by the UK "psychiatric
CFS" school promoting their view that ME no longer exists and that CFS (a term
they use interchangeably with chronic or long-term "fatigue" ) is a psychiatric
(behavioural) disorder with no physical signs which is perpetuated by aberrant
"illness beliefs" and "personality" which is best managed by a form of
psychotherapy known as cognitive behavioural therapy (CBT) and delivered
according to a "management plan" administered by psychotherapists. Wessely
himself has published over 200 papers mostly on his own view of CFS but his
beliefs are not supported by international experts and there is stringent
criticism of his papers in the peer-reviewed medical literature (see below).
On the other hand, ME /ICD-CFS is formally classified as a neurological disorder
in the WHO International Classification of Diseases. The whole area of
terminology has become a minefield for the unwary, to the serious detriment of
patients. This dichotomy has been summarised by Fred Friedberg, Clinical
Professor in the Department of Psychiatry at the State University of New York:
"descriptive studies of CFS patients in England, the US and Australia suggest
that the CFS population studied in England shows substantial similarities to
depression, somatization and phobic patients, while the US and Australian
research samples have been clearly distinguished from depression patients and
more closely resemble fatiguing neurological illnesses". It is important to be
familiar with the fact that "chronic fatigue" and chronic "fatigue syndromes" do
not equate with chronic fatigue syndrome (CFS) or with ME.
Following an erroneous News Release in 1990 about this point, the American
Medical Association was forced to issue a correction which said: "A news release
in the July 4 packet confused chronic fatigue with chronic fatigue syndrome; the
two are not the same. We regret the error and any confusion it may have caused.
AMA Science News Editor: John Hammarley"
Wessely’s beliefs, however, have flooded the UK literature; he is adviser to the
UK Government and to the Ministry of Defence and his wife (psychiatrist and GP
Dr Clare Garada) is Senior Policy Adviser to the Department of Health.
Specifically, Wessely and those who agree with him officially advise that no
investigations should be performed to confirm the diagnosis; particularly, they
emphasise that immunological abnormalities (documented by worldwide researchers
as underlying the disorder) should not "deflect the clinician from the
(psychiatric) approach….and should not focus attention towards a search for an
‘organic’ cause".
In this respect it is notable that it has been convincingly demonstrated that
changes in different immunological parameters correlate with particular aspects
of ME / ICD-CFS symptomatology and with measures of disease severity, lending
further support to the concept of immunoactivation of T- lymphocytes.
Such findings seem to be intentionally diverted by Wessely and his colleagues,
who officially advise Government that the performing of medical investigations
on patients with ME or CFS is neither necessary nor appropriate and that doing
so merely reinforces sufferers’ "dysfunctional belief" that they are physically
ill, from which they seek to obtain secondary gain in the form of sickness
benefits and from the relinquishing of personal responsibility for their
imagined ill-health.
Wessely and his associates ignore the fact that ME is often confused with
multiple sclerosis. They also ignore the evidence that ME /ICD-CFS has features
of autoimmune disorder and features of allergy and multiple chemical sensitivity
(MCS), which is now officially recognised in the International Classification of
Diseases, (ref: ICD 10: SGBV:3.1:code T78.4: Chemical Sensitivity Syndrome,
Multiple). Data presented at the American Association for Chronic Fatigue
Syndrome (AACFS) Fifth International Research and Clinical Conference in Seattle
in January 2001 showed that MCS was present in 42.6% of patients compared with
3.8% of controls.
Wessely, however, asserts that MCS does not exist and that along with
fibromyalgia (in apparent contempt of the fact that FM is formally classified as
a legitimate physical disorder in the International Classification of Diseases
under Soft Tissue Disorders ref ICD-10 M.79.0 ), conditions such as irritable
bowel syndrome, pre-menstrual tension, globus hystericus, tension headache and
chronic fatigue syndrome should all be classed as one entity because, he claims,
all occur more frequently in women and all are associated with unnecessary
expenditure of medical resources and are afforded unjustified credibility
largely because of "an artefact of medical specialisation": Wessely believes
this one entity to be a psychiatric disorder which he terms a "functional
somatic syndrome".
Psychiatrists who do not subscribe to the "Wessely School" doctrine point out
that "somatic syndromes" are simply assumed to be without a physical cause, but
this assumption is never tested or validated; they advise that it is a mistake
to diagnose mental illness in people with ME / ICD-CFS because of the unproven
and incorrect assumption that their physical complaints are of psychological
origin.
Wessely and colleagues also dismiss the evidence that immune abnormalities
documented in ME/ ICD-CFS follow a recognisable, consistent and reproducible
pattern, with clear evidence of an immune activation state. It is true that the
immune system dysfunction is not reflected in any of the currently used case
definitions, hence the international support for a name change. Currently, the
favoured choice supported by the internationally renowned immunologist and ME /ICD-CFS
expert Professor Nancy Klimas (of the University of Miami) is for NEIDS or Neuro-Endocrine-Immune
Dysfunction Syndrome or for CNDS (Chronic Neuroendocrineimmune Dysfunction
Syndrome), both of which accurately reflect the nature of the underlying organic
pathoaetiology.
It may well be the case that ME is one of the recognised conditions which are
characterised by chronic post-exertional fatiguability, but ME is different in
clinical presentation from other chronic fatigue syndromes. The evidence speaks
for itself. Other postviral fatigue states are clinically in contrast to the
three cardinal features of ME. Other fatigue states which may follow flu,
measles, chickenpox, herpes or mononucleosis lack not only the clinical but also
the laboratory features of ME. There are no less than nine case definitions of
CFS. The two most commonly used (the UK 1991 Oxford case definition which was
drawn up by Wessely and his associates and the US 1994 CDC case definition, in
the formulation of which Wessely participated) both unequivocally state that
patients with CFS have no physical signs.
In the US, in Australia and on the Continent, such a stipulation is now accepted
as being unsatisfactory and apart from the UK (where the forthcoming Chief
Medical Officer’s Report on CFS/ME (see below) is likely to state that "on
present evidence, (subgrouping CFS) may be considered a matter of semantics and
personal philosophy"), there is an increasing clamour within the medical
fraternity for the urgent need to study sub-groups of "CFS" because those with
ME / ICD-CFS always do have observable physical signs and abnormal immunological
laboratory results.
The overriding difficulty is that some clinicians in some medical disciplines
apparently fail to see them, have no desire to look for them or even deny their
significance and existence. It is the case that some of those doctors have been
funded for many years by sources with links to the same industry which
manufactures the chemicals which may be contributing to the rise in incidence of
chemically-induced ME / ICD-CFS. They have also been funded by the insurance
industry and by private interests such as The Linbury Trust which belongs to the
Sainsbury (supermarket) family.
Since 1991, the Linbury Trust has funded over £4 million for research into CFS
(which they call "chronic fatigue"), almost all of it by Wessely and his
psychiatrist colleagues. Since 1996, David Sainsbury (now Lord Sainsbury of
Turville) has donated £7 million to the UK Labour Party. He is currently
Minister for Science; as such, he has responsibility for the Office of Science
and Technology and the Chemical and Biotechnology industries, as well as all the
Research Councils, including the Medical Research Council.
The MRC, itself often now funded by partnership schemes with industry, is on
record as regularly funding research into "chronic fatigue" by psychiatrists and
others who subscribe to Wessely’s views (who then claim that their results
relate to "CFS"), whilst regularly declining to fund applications for research
submitted by suitably qualified non-psychiatrists into the physical basis of ME,
claiming of those applications: "none have been of sufficiently high scientific
quality to merit funding".
This is notable, given that the psychiatric research done by Wessely’s close
colleagues and co-authors which the MRC has funded has been rigorously
criticised on the grounds that it is methodologically flawed and biased and that
it relies on a highly selective and misrepresentative choice of references,
including citing too many of their own studies as references. In a letter to
Wessely (made widely available), the Countess of Mar brought to his personal
attention the fact that questions have been asked about his methodology, the
selection of evidence he utilises, the obvious bias, and the lack of balance and
objectivity. That same letter continued "You must recognise that you and your
colleagues have an enormous influence on the treatment meted out to a very large
group of sick people.How you managed to achieve this influence is a matter for
conjecture".
The Office of Science and Technology monitors all government funding of research
grants and controls official science policy and it is "policy" which determines
the research which is funded: "The Department funds research to support policy".
It is the case that in 1998, Wessely joined a Board of the Medical Research
Council but it is unthinkable that he would be asked to read, report on or
referee anything to do with his own work. It is also the case, however, that
from 1989 to 1992 the MRC granted the Institute of Psychiatry £92,000 for
research on "chronic fatigue".
Since 1988, psychiatrists of the "Wessely School" have been funded not only by
the MRC but by Wellcome Training Fellowships in Clinical Epidemiology; by a
Wellcome Research Fellowship in Epidemiology; by the Wellcome Trust; by ICI
Pharmaceuticals; by Pfizer UK; by Duphar Pharmaceuticals; by The Linbury Trust;
by the Medical Policy Group of the Department of Social Security; by the
Department of Health; by Private Patients Plan by BUPA and by the US Department
of Defense.
If influential doctors can succeed in portraying ME as non-existent and CFS as
psychiatric in origin, then the chemical companies and the governments who
granted them product licences would not be at risk of being accountable should
there turn out to be a provable link with the synergistic effects of so many
chemicals, daily exposure to which is now impossible to avoid due to the huge
increase in chemical usage. It is this prevailing use of so many chemicals which
is thought to be chronically stimulating the immune system.
In the shadows is also the massive insurance industry, which cannot ever face
liability for chemical injury or environmental illness without considerable
strain and even collapse.
Accountability becomes more remote if all research which demonstrates the link
between chemicals and the present upsurge in chemically-induced ME / ICD-CFS is
blocked, dismissed, trivialised, ignored or discredited. As well as being
advisors to the UK Government, some of this same group of doctors are also known
to have indisputable long-term commitment to the insurance industry and have
acted as advisors to it, notably Professor Wessely and his close colleague and
co-author Michael Sharpe, also a psychiatrist who claims to be a specialist in
"CFS". Many illustrations could be provided; only one is mentioned here.
On 17 May 1995 both Wessely and Sharpe
were the main speakers at a symposium held at the London Business School
entitled "Occupational Health Issues for Employers" at which they advised
employers how best to deal with employees who are on long-term sickness absence
with "ME". Information presented included informing attendees that ME/CFS has
also been called "the malingerer’s excuse". Another speaker at this conference
was Dr John le Cascio, Vice President of UNUM.
Just three extracts from a copy of UNUM’s "Chronic Fatigue Syndrome Management
Plan" seem significant:
Diagnosis: Neurosis with a new banner
UNUM stands to lose millions if we do not move quickly to address this
increasing problemattending physicians (must) work with UNUM rehabilitation
services in an effort to return the patient / claimant back to maximum
functionality with or without symptoms.
Apart from those mentioned, there are other areas related to ME / ICD-CFS in
which Wessely is known to have special interests, none of which he usually
declares.
One of these is PRISMA, which stands for Providing Innovative Service Models and
Assessments. It is based in Germany and is a multi-national healthcare company
working with insurance companies; it arranges rehabilitation programmes for
those with "CFS" and its recommended management is cognitive behavioural
therapy, placing heavy emphasis on training sufferers to "regain a normal life
again".
PRISMA claims to be especially concerned with long-term disability from the
perspective of government, service providers and insurance companies. It claims
to have developed a "unique treatment programme" for "hopeless" cases (it
specifically includes those with ME /CFS), claiming that such patients "avoid
physical exercise and social activities, as they fear these may trigger new
bouts of complaints". In the PRISMA Company Information, Professor Simon Wessely
is listed as a Corporate Officer.
He is a member of the Supervisory Board; in order of seniority, he is higher
than the Board of Management. He is listed as a "world expert" in the field of
"medically unexplained illnesses, including Chronic Fatigue Syndrome". Is it
possible that Wessely is recommending to the Chief Medical Officer a management
programme for "CFS" which is known to be harmful for those with ME / ICD-CFS and
which is provided by a company of whose Supervisory Board he is a member?
Another area with which Wessely is known to be involved is the organisation now
called HealthWatch, but which used to be called The Campaign Against Health
Fraud. This UK organisation, now a charity, is known for its zealous views which
are antagonistic towards alternative and complementary medicine, and towards
those who believe in environmental and chemically-induced illness, including
multiple chemical sensitivity.
It is a campaigning organisation which in the past has accepted funding from
both pharmaceutical companies and the health insurance industry. In the
Campaign’s own literature, it states that it plans a programme of public
information and that its aims are "to oppose…unnecessary treatment for
non-existent diseases". The same document lists Simon Wessely as a "leading
member of the campaign", together with other doctors including other
psychiatrists and Dr David Pearson of Manchester. It is the case that Wessely
asserts that ME is a "non-existent" disease.
Pearson became notorious for his evidence for the Defence in the High Court in
London in 1991 in which he relied upon an unauthorised draft report from the
Royal College of Physicians entitled Allergy: Conventional and Alternative
Concepts despite a letter from solicitors for the Royal College of Physicians
(Field Fisher Waterhouse) forbidding him to use it; the letter, dated 18th
October 1991, stated "The College is not in a position to endorse the contents
or conclusions of the draft you have seen…we must ask that this letter be
brought to the attention of the Judge".
The draft report upon which Pearson relied in evidence was subsequently
subjected to stringent critical review and was withdrawn; it was substantially
amended on the grounds that Fellows of the College found it to be wildly
inaccurate and misleading, but the Judge (Mr Justice McPherson) did not know
this and found against the Plaintiff (who could not obtain Legal Aid to mount an
appeal). It is difficult to know how significantly the Judge was influenced by
the inaccurate draft report, but it is likely that he would have been influenced
by an apparently prestigious report supposedly backed by the Royal College of
Physicians.
The HealthWatch website has links to other Internet sites, including amongst
others the Advertising Standards Authority, a body which regulates advertising
and which HealthWatch members have used to discipline alternative therapy
practitioners; the American Council on Science and Health, a powerful group
which is sponsored by multinational industry including pharmaceutical companies;
the Association of Broadcasting Doctors; the Food and Agriculture Organisation;
Net Doctor; NHS Direct Online; the UK Department of Health and the Cochrane
Collaboration (a sibling of the Centre for Reviews and Dissemination based at
the University of York, which carried out the review of the literature for the
Chief Medical Officer’s forthcoming report and which recommended cognitive
behavioural therapy as "best practice" management of CFS/ME.
The Chief Medical Officer has himself confirmed in writing that it was Wessely’s
own database which formed the basis of that literature review; it is a matter of
record that Wessely himself was adviser to the team which carried out the
review).
The Chief Medical Officer’s Working
Group on CFS/ME
In 1998 the UK Chief Medical Officer (CMO) set up a Working Group to produce an
official Report on ME and CFS: many people hoped and believed that the aim was
to produce accurate information about the condition so that UK clinicians would
be brought up to date with current scientific knowledge. In reality, the remit
of the CMO’s advisory group was narrow: it was restricted to just one single
aspect, namely to advising UK clinicians as to the best way of managing the
disorder, it being acknowledged that currently, there is no effective treatment.
Of special concern is the fact that the remit specifically dictated that ME and
CFS should be considered as one entity: this has been particularly problematic,
because the most influential members of the Working Group are Simon Wessely and
his psychiatrist colleagues. Psychiatrists and those who agree with Wessely’s
beliefs are heavily represented on the Working Group and it is known that their
beliefs about the nature and management of the disorder have dominated the
proceedings.
To the concern of many researchers and clinicians, advice that only the most
basic screening should be carried out on patients with CFS/ME is likely to be
enshrined in the CMO’s forthcoming Report, the final draft of which specifically
advises that no immunological tests and no nuclear medicine scans should be
carried out on patients suspected of suffering from "CFS/ME" (even though it is
these two areas which are delivering the strongest evidence of organic
pathoaetiology).
Also of concern is the fact that whilst Deputy Chair of the CMO’s Working Group
on CFS/ME, Professor Anthony Pinching of St Bartholomew’s Hospital, London
published an article in Prescribers’Journal in which he asserted that
"over-investigation can (cause patients) to seek abnormal test results to
validate their illness". Such views are in stark contrast to those expressed by
international researchers, whose clear message is that basic laboratory testing
is not sufficient for patients with ME / ICD-CFS, and that more advanced
immunological and neurological tests are necessary.
As long ago as 1994, world-renowned ME/ ICD-CFS clinician and researcher Daniel
Peterson stated in his Introduction to an International Research and Scientific
Conference: "I take great issue with the current recommendations that no
additional testing should ever be done. I believe there are indications for more
advanced testing".
As recently as July 2001, the American Medical Association issued a statement,
explaining that 90% of ME / ICD-CFS patients show normal test results on basic
investigations, and that studies designed for specific subgroups are needed.
Anthony Komaroff, Associate Professor of Medicine at Harvard and an undisputed
world expert on the disorder, said: "Researchers are already using imaging
technology to measure brain hormones and are examining the function of the
immune system. There is considerable evidence already that the immune system is
in a state of chronic activation in many patients with CFS".
In the UK, it seems that clinicians are to be advised that it is inappropriate
and unnecessary even to look for such pathology in those who are thought to have
this disorder.
The final draft of the CMO’s forthcoming report states that management is to be
psychiatric (cognitive behavioural therapy and graded exercise), and that future
NHS services for "CFS/ME" patients "ideally would adopt a biopsychosocial model
of care--- The components of such a service are facilities for activity
management".
In the final draft of November 2001, there is no recommendation (nor even any
acknowledgment of the need) for the urgent establishment of centres of
excellence which would provide facilities to look at the underlying immunology,
neurology, endocrinology or the molecular biology of ME / ICD-CFS, but only for
more psychiatric services; the need for provision of in-patient care or suitable
respite care for such very sick people is notable by its absence.
Caution Needed by Clinicians
and Lawyers
It is essential to be ever mindful of the fact that it is unsafe to assume that
the most prolific published author on a subject is necessarily the unquestioned
expert on that subject. This is especially true in relation to ME / ICD-CFS,
where Wessely is keen to promote himself as a medico-legal expert.
In any medical discipline, the selective or multiple reporting of studies as if
they were different trials, sometimes by "shifting first authorship", makes it
difficult to detect duplicate publications in different journals: examples of
this practice in psychiatry include one trial which had been published (in one
form or another) in 83 separate publications.
Once again, however, medical science is
seeking to expose such deliberate manipulation of the facts. Undeclared
competing interests which in reality underlie numerous published biomedical
studies are again in the spotlight, with editors of JAMA (Journal of the
American Medical Association) and the BMJ Publishing Group now looking for ways
to ensure that the studies which they publish are free from hidden bias. This
supports the acknowledgment by medical science that the problem not only exists
but is considerable, and that it is essentially a form of scientific misconduct.
In an Editorial in 2000 in the journal Psychological Medicine entitled
"Publication Bias" Gilbody and Song state
"Despite psychological researchers being the first to recognize the importance
of publication bias (Sterling, 1959), this issue has been all but ignored in the
sphere of mental health. Publication bias needs to be dealt with if psychiatry
is going to become more ‘evidence-based’. The continued existence of publication
bias represents an abuse of the trust that patients give and is essentially a
form of scientific misconduct.
The recognition of the potential consequences of publication bias has led to
important advances in its minimization and detection. However, these methods are
rarely employed when they should be in psychiatry. This is unfortunate when,
compared to other specialities, psychiatry is likely to be especially prone to
publication bias.
"The cornerstone of evidence-based medicine is the belief that good quality
research should form the basis of clinical practice and decision-making. It is
largely published research that forms the ‘knowledge base’ of the evidence
movement. A fundamental difficulty arises when published research results are a
biased sample of all research results.
"A consequence is the danger that readers of journals are more likely to see
studies showing results in a certain direction". In the UK, nowhere is this more
pertinent than in the field of ME / ICD-CFS.
Conclusion
Clinicians and lawyers need to be fully aware of the political undercurrents
surrounding the reality of ME, ICD-CFS and CFS. They need to come to their own
conclusions about what might motivate a group of doctors to disassemble a
formally classified neurological disorder and endeavour to replace it by a much
larger category of psychiatric "behavioural" illness.
They need to consider how, despite there being such an extensive worldwide
literature on the organic nature of ME / ICD-CFS, a group of UK doctors has come
to exert such influence over the rest of the UK medical community to the extent
that discussion of the biomarkers of serious organic pathology is rarely
published in the UK medical journals, with the result that UK clinicians are
effectively being deprived of the opportunity to obtain an informed and balanced
over-view of the reality of their patients’ suffering, as the literature they
are most likely to see reflects only the views of Wessely and his associates.
Lawyers may wish to reflect on some of the practical consequences of the denial
of ME / ICD-CFS; these include:
--- refusal and denial of state benefits: those with a
psychiatric diagnostic label are denied the higher rates of some state benefits
and do not usually qualify for the Disability Living Allowance (DLA), which
requires that the recipient has a physical disability
--- difficulties in obtaining insurance benefit if unable to work through
ill-health (some health insurance companies expressly exclude psychiatric
illness)
--- difficulties in obtaining private health care insurance (again, some
companies do not provide cover for psychiatric disorders)
--- difficulties in obtaining early retirement on health grounds
--- unfit patients are forced to return to work
--- inappropriate treatment (some ME sufferers have been threatened with
being sectioned under the Mental Health Act unless they comply with psychiatric
treatment)
--- withdrawal of Out of Area Treatment / Transfers for those with ME / ICD-CFS
(necessary if no suitable clinician is available within the patient’s own Health
Authority area; there is a marked lack of appropriate referrals, eg to
neurologists, immunologists endocrinologists etc )
--- lack of appropriate service provision within the NHS
--- special problems for children and young people with ME.
Lawyers may wish to consider that on 23rd
November1999 the House of Commons Select Health Committee produced its report
looking at adverse clinical incidents, unexpectedly poor outcomes to treatment,
failures in medical care, poorly-performing doctors and the NHS complaints
procedures; the Select Committee took evidence and representations from at least
eight people about ME.
It may also be of interest to lawyers to know that the opinion of an eminent
Leading Counsel (a member of the House of Lords) has been obtained and that this
Opinion is unequivocal. It states:
" On the document you have sent me there is an overwhelming case for the setting
up of an immediate independent investigation as to whether the nature, cause and
treatment of ME as considered by the Wessely School is acceptable or consistent
with good and safe medical practice.
" There is substantial doubt as to whether such could be the case in view of the
clear division of medical opinion.
"A formal request should be made to set up such an
enquiry, at which interested parties could be represented by Counsel. It is all
but essential that a reputable firm of solicitors should be instructed: an
approach to Lord Mishcon would be well advised".
Lawyers may wish to consider if a small group of exceptionally influential
doctors should be allowed to determine public policy without there being some
external moderation. They may wish to consider why disease definition has become
socially constructed, resulting in political tensions between sufferers, medical
science and the modern State, a consequence of which is the intentional
construction of "mental illness" by some groups of medical professionals
resulting in stigma caused by the on-going denial.
If clinicians and lawyers are unaware of this background and accept the readily
proffered psychiatric explanations as if objective and based on sound scientific
research, they will be unable to support their patients / clients with ME /
ICD-CFS and will risk failing in their professional duty in this difficult area.
E.P.
Marshall (1)
M. Williams (1)
A. Hooper (2)
(1) ME
Research (UK)
(British Library Registered)
c/o The British Library
Science Reference & Information Services
Boston Spa, Wetherby,
West Yorkshire
LS 23 7BQ,
UK
(2) Emeritus Professor of Medicinal Chemistry
Department of Life Sciences
University of Sunderland
SR2 7EE
UK
