Introduction
There is still much confusion and a lack of accurate knowledge
about severe ME/CFS in the medical profession, leaving many patients
"dismissed and abandoned without support." Hooper et
al (2005) .
It is a matter of record that "the most severely affected
are excluded from study in the UK." (Hooper, Marshall &
Williams 2006) Recent research by the 25% Group uncovers a shocking
picture of severely ill ME/CFS sufferers being labelled as psychiatric
patients, being treated with contempt by GP's, doctors and nurses,
being locked in secure units and shut in AIDS wards, being refused
food and being made to participate in inappropriate graded exercise
and behavioural therapy, designed to convince them there is nothing
wrong with them. (Crowhurst 2005)
What is ME/CFS?
Variants of the term "M.E." were first used following
a series of repeating epidemics starting in May 1955 in the Royal
Free Hospital, London (Hyde 1998). Recognised as a specific disease
entity by The Royal Society of Medicine in 1978 and by the World
Health Organisation since 1969 as an organic neurological disease,
ME/CFS is currently classified under ICD code G93.3. In the USA,
ME ranks second only to HIV as the cause of serious, long-term
illness (Hooper 2004)
Cycles of severe relapse are common, as are further symptoms developing over time. Around 30% of cases are progressive and degenerative and sometimes ME/CFS is fatal. (National CFIDS Foundation). Two recent reviews have concluded that, "Substantial improvement is uncommon and is less than 6%" (Anderson et al. 2004); and, "Full recovery... is rare" (Cairns & Hotopf, 2005). According to the Chief Medical Officer (DH 2002) people with severe ME/CFS in the UK currently receive "seriously inadequate health care"
ME/CFS is characterized by (Mark 2005) : malaise following even
modest physical activity; delayed reaction to physical and/or
mental activity (up till 24 hours and more); abnormal length of
convalescence (out of proportion to level of activity); varying
and fluctuating symptoms during the day, but also in the course
of days, weeks and months. Above all, the defining characteristic
of ME/CFS is cellular metabolic (Sieverling 1999) and acquired
central nervous system dysfunction ( Hyde 2003)
There is a significant body of compelling published evidence, demonstrating the involvement of the central nervous system, the autonomic nervous system and the peripheral nervous system in the pathogenesis of ME/CFS, as well as immunological and vascular disruption. (Hooper, Marshall & Williams (2006) Objective evidence of quantifiable organic abnormalities in Myalgic Encephalomyelitis patients has existed since the 1950's. (Bassett 2006) According to Professor Komaroff, a renowned world expert on ME/CFS, there are more than 2,000 papers which demonstrate that ME/CFS is an organic, not psychiatric, disorder (Hooper et al 2005).
What ME/CFS is not :
ME/CFS and Chronic Fatigue are not the same. ME is formally classified
as a neurological disorder in the International Classification
of Diseases (ICD10:G 93.3; WHO 1992), and the ICD
separately classifies fatigue syndromes as a behavioural (psychiatric)
disorder (ICD 10:F 48) Researchers have failed to distinguish
between ME and CFS and/or between subgroups. (Anon 2001) As Carruthers
& van de Sande (2005) point out : " Chronic fatigue
must not be confused with ME/CFS because
the 'fatigue' of ME/CFS represents pathophysiological
exhaustion and is only one of many symptoms.
ME/CFS is not a somatoform disorder. The documented biochemical, metabolic, vascular, neurological and muscle abnormalities in ME/CFS patients (Williams 2004) have led to the WHO classification of ME/CFS as a neurological illness. The UK Department of Health and the WHO Collaborating Centre at the Institute of Psychiatry have agreed that ME/CFS is undoubtedly neurological. There is no published evidence whatsoever, as opposed to opinion, that ME (as distinct from chronic fatigue) is a psychiatric disorder. (Williams 2004). Unlike somatisation disorder, M.E. is not 'medically unexplained.' M.E. is a multi-system disease with many organ and bodily systems affected, producing a myriad of symptoms [and] many aspects of the pathophysiology of the disease have, indeed, been medically explained in volumes of research. (ME Society of America)
ME/CFS is not "cured" by Cognitive Behavioural Therapy (CBT) and Graded Exercise (GET). CBT and GET are not accepted in the British Formulary for ME and therefore cannot be considered automatically to be within the legal framework for treatment, especially for the severely affected. (25% Group 2005) CBT and GET are potentially harmful to anyone with neurological ME. The Chief Medical Officer (2002) has warned that exercise-based regimes advocated for less severely affected patients tend not to have been studied among those most severely affected. Shepherd (2001) warns that as much care should be taken in prescribing exercise as in prescribing pharmaceuticals for ME/CFS patients do not respond to exercise in a manner that is expected of healthy people (Streeten et al 2001) For the first time evidence of raised levels of isoprostanes, highly noxious by-products of abnormal cell membrane metabolism, associated with exercise, that precisely correlate with patients' symptoms has been presented (Kennedy, Spence & Belch et al 2005).
It is not 'fatigue' or 'tiredness' that is the one essential characteristic of ME/CFS but central nervous system (CNS) dysfunction (Bassett 2006). As leading M.E. expert Dr Byron Hyde MD (2003) explains: 'The one essential characteristic of M.E. is acquired CNS dysfunction, [not] chronic fatigue. A patient with M.E. is a patient whose primary disease is CNS change, and this is measurable. We have excellent tools for measuring these physiological and neuropsychological CNS changes: SPECT, xenon SPECT, PET, and neuropsychological testing.' Drs Cheney and Peterson describe ME/CFS as 'A global disablement, nearly comparable to paralysis.' (Johnson 1996) Dowsett comments that '"Fatigue" is the wrong word. Fatigue is a silly word.' (Colby 1996) Dr David Bell M.D (1995) describes the word "fatigue" as: 'A very inappropriate term for what patients experience. It's not really fatigue at all, which is defined as a normal recovery state from exertion and that is precisely what does NOT happen in this illness. ' In 2003 The Canadian Expert Consensus Panel published a medical milestone, the first clinical case definition for the disease known as myalgic encephalomyelitis/chronic fatigue syndrome, making it compulsory that in order to be diagnosed with ME/CFS, a patient must become symptomatically ill after exercise and must also have neurological, neurocognitive, neuroendocrine, dysautonomic, and immune manifestations. In short, symptoms other than fatigue must be present for a patient to meet the criteria. (Carruthers et al 2003)
ME/CFS is not depression. Research, for example, shows that CFS
patients show more alpha electroencephalographic activity during
non-REM sleep, but this is not seen in dysthymic or major depressive
disorder (Whelton, Salit, & Moldofsky, 1992). Cognitive changes
are also not due to psychiatric co-morbidity (Vercoulen et al
1998 Backwood et al 1998) SPECT cerebral blood flow studies of
persons with CFS show decreased blood flow in several key areas
such as frontal lobes and brain stem which are different from
both healthy controls (Barnden et al, 2001Costa et al, 1995) and
depressed subjects (Schwartz et al, 1994; Fischler et al, 1996).
PET scan studies have reached similar conclusions (Tirelli et
al, 1998). Bakheit, Behan, Dinan, Gray, and O'Keane (1992) found
up-regulation of hypothalamic 5-hydroxytryptamine receptors in
patients with postviral fatigue syndrome but not in those with
primary depression. Hickie (1991) found that general characteristics
of depression: anhedonia (lack of pleasure in life); weight loss;
suicidal ideation; severe psychomotor change; pathological guilt;
and severe anxiety, are not typical in ME/CFS.
The predominant psychiatric paradigm, still seems to be that
patients have medically unexplained chronic fatigue, and that
their problems derive from deconditioning consequent on physical
inactivity at best, and simple avoidance behaviour (underpinned
by abnormal illness beliefs) at worst.. (Scottish Cross Party
Submission 2005). What happens in ME/CFS, however, has little
to do with cardiovascular deconditioning (Spence & Stewart
2004) and is more related to chronic orthostatic intolerance/postural
tachycardia syndrome (POTS), caused by vascular dysfunction. Goudsmit
(2005) points out that studies have shown that most patients do
not avoid minimal activity and that lack of fitness is not related
to the fatigue in CFS (Bazelmans et al 2001 ) . Moreover, deconditioning
cannot explain the documented delay between the end of exertion
and the exacerbation of symptoms, the upregulated immune system
etc. (De Merlier et al 2000)
DIAGNOSIS & TREATMENT
Although , as with lupus, multiple sclerosis and ovarian cancer
for example, there is no medical test available to confirm a diagnosis
of M.E, it is absurd to claim no objective or quantifiable abnormalities
can be found in patients with severe M.E. (Bassett 2006) "Tests
will only all be normal in M.E. patients as with all illnesses
if completely the wrong tests are done, or if those tested
do not in fact have M.E. in the first place." (Bassett 2006)
. Tests which can aid diagnosis include :
SPECT and xenon SPECT scans of the brain : to measure decrease
in cerebral blood flow, especially 24-48 hours after exertion.
Recent studies have shown that 80% of ME/ICD-CFS patients
will have abnormal SPECT scans. These abnormalities have also
been shown to correlate with clinical status. (Carruthers et al.
2003)
MRI scans of the brain : Punctate, subcortical areas of high signal
intensity consistent with edema or demyelination were identified
by MRI in 78% of ME/CFS patients (similar to those seen in MS).
The abnormalities in M.E. patients most closely resemble those
seen in AIDS encephalopathy. Research has shown that 50% - 80%
of ME/CFS patients will have abnormal MRI scans. (Hyde, 2003)
(Carruthers et al. 2003)
PET scans of the brain. PET scans have shown decreased
metabolism of glucose in the right mediofrontal cortex. PET scans
have also shown generalised hypoperfusion of the brain with a
particular pattern of decreased neuronal metabolism in the brain
stem. (Carruthers et al. 2003)
Neuropsychological testing : to measure cognitive function.
Bastein (1992) states : " Deterioration of IQ levels,
as well as cognitive and motor dysfunction in these patients,
suggest a pathological process in the brain. The pattern of focal
and lateral impairments is consistent with patients who have this
particular neurologic dysfunction. The impairment pattern is consistent
across the study group [of M.E. patients] although impairment
levels vary. This pattern is not seen in other diseases or injuries."
EEG brain maps and QEEG brain maps 95% of ME/ICD-CFS patients
have been found to have abnormal cognitive-evoked EEG brain maps
(Hooper, 2001 )
Romberg or tandem Romberg test : 'In his 1995 Australian
Workshop, [ME/ICD-CFS expert Dr Paul] HYPERLINK "http://www.ahummingbirdsguide.com/wcheney.htm"
Cheney said that more than 90% of patients have an abnormal
Romberg versus 0% of controls.' (Hooper et al. 2001)
Tests of the immune system : The immune system abnormalities
in M.E. patients mimic the immune pattern seen in viral infections.
(McLaughlin,) (Carruthers et al. 2003) (Hooper et al. 2001)
Physical Examination : In a recent 25% Group survey of
the most severely affected (Crowhurst 2005) 71% of respondents
reported that they experience 20 or more severe autonomic, endocrine,
neurological and immune system manifestations each. Physical signs
of illness commonly observed in ME/ICD-CFS patients include: Nystagmus;
nystagmus is jelly-like and variable (15% of M.E. patients will
have nystagmus) , Sluggish visual accommodation , Unequal pupils
and contrary pupil reaction to light; A labile blood pressure
(sometimes as low as 84/48 in an adult at rest) ; Shortness of
breath (particularly on exertion) ; Sometimes marked falling pulse
pressure in arterial pressures taken first when prone, then sitting,
then standing ; Rapid heart rate on minor activity such as standing;
Subnormal temperature ; Patients show significant reduction in
all lung function parameters tested; Liver involvement (an enlarged
liver or spleen) ; 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 and spontaneous periarticular bleeds
in the digits ; Mouth ulcers ; Hair loss ; Atrophy of fingerprints
is due to perilymphocytic vasculitis and vacuolisation of fibroblasts
; Ghastly pallor of face with frequent lupus-like submaxillary
mask ; Parkinsonian rigidity of facial expression; Scanning, disjointed
speech, or speech reversals ; Nasal passage obstruction and inflamed
areas around tonsillar pillars ; Sicca syndrome of conjunctiva
and mucous membranes ; Frequent equivocal Babinski/plantar reflex
on one side ; Unusual sensitivity of cervical vertebrae area;
(Hooper et al. 2001) (Hyde, 2003)
It is very important that a diagnosis is reached as early as possible
(ie. within a period of between 3 6 months) so that appropriate
advice and treatment can be started as early as possible. Doctors
and clinicians can help by: (extract from CMO Report Annex p.12)
listening to the patient, recognising and believing his
or her individual experience
acknowledging uncertainty and the impact that this has
on the patient, family, and carers
providing support and encouragement e.g. during setbacks
providing information on and discussing the nature of the
condition, approaches to self management, helpful therapies, and
how to access other agencies and services
agreeing upon a name for the condition
giving advice on symptomatic treatment
Treatments
There are no known appropriate treatments available at this
time and it has been found that some of the so-called mainstream
therapies applied to ME sufferers have been unhelpful or harmful
on many occasions (especially treatments such as Cognitive Behavioural
Therapy and Graded Exercise Therapy). Of those who tried Graded
Exercise, 95% of Respondents, in the latest 25% Group survey,
reported that it had a negative impact on them and 96% reported
that Cognitive Behaviour Therapy had a negative impact. (Crowhurst
2005)
Probably the most beneficial approaches to take with ME Sufferers
(especially at the early, acute stage) is rest and creative pacing
; the ongoing process of learning : "when you can, when
you can't and when you might" (Crowhurst L 2004)
It is essential to adopt a positive outlook and to work constructively
and creatively with patients who have severe ME/CFS. The doctor
who is willing to work in partnership and communicate sensitively
with patients, developing a trusting, caring and professional
relationship can make a real difference to the quality of life
of these patients.
(References can be provided upon request, as well as and
additional useful about ME, by contacting us at:
The 25% ME Group, 21 Church Street, Troon, Ayrshire, KA10 6HT
Main Office Tel: 01292 318611/Advocacy Helpline/Fax: 01292 312369
Or by visiting our website at HYPERLINK "http://www.25megroup.org"
www.25megroup.org, email: HYPERLINK "mailto:enquiry@25megroup.org"
enquiry@25megroup.org
Further information about ME is also available from:
MERGE, The Gateway, North Methven Street, Perth, PH1 5PP, Tel: 01738 451234Website: www. meresearch.org.uk
CFS Research Foundation, 2 The Briars, Sarratt Rickmansworth, Herts, WD3 6AU, Tel: 01923 268641. Website: www.cfsresearchfoundation.org.uk
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