MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE
SYNDROME
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What is it? (Definition)
Myalgic Encephalomyelitis (ME)
1. The term chronic fatigue syndrome (CFS) is used to describe a spectrum of illnesses
that are characterised by physical and mental fatigue and easy fatigability. Its aetiology
is unclear but both physical and psychological factors are believed to play a part. The
symptoms of fatigue depending on their severity are potentially disabling and may
affect both physical and psychological mental functioning including cognitive function.
They are Fatigue is usually accompanied by a number of other non-specific (the
symptoms are characteristic and specific) symptoms such as flu-like malaise, muscle
and joint pain, headaches, poor sleep, poor concentration and memory.
(We feel that it is very important to include in this paragraph other symptoms, which
may be even more disabling than fatigue in ME/CFS. The Association of Young
People with M.E. (AYME) and the Open University did a study which found that 48% of
these young people rated two or more symptoms as equally severe, and 10% rated
headache as their most severe symptom (‘Speaking Up’ AYME/OU 2000*2).
2. ME/CFS is also known as post viral fatigue syndrome. In the past the term
neurasthenia was also used to describe the condition. There is little evidence that ME
is different from CFS, so most authorities consider the condition as ME/CFS. However,
there is currently disagreement about definitions and terminology. ME/CFS, a
neurological condition should not be confused with chronic fatigue. "Neurasthenia" is
used today only in connection with "Chronic Fatigue", which is classified by the World
Health Organisation in ICD-10 as F48 (a mental disorder), whereas ME/CFS is
classified as an organic neurological disease under ICD code G93.3. However, in some
quarters, there is currently disagreement about definitions and terminology. A disorder
of this type has been described in the medical literature for over two hundred years.
3. A specific cause of ME/CFS has not yet has been identified. It is likely that the term
ME/CFS describes a spectrum of disorders in which physical and psychological mental
functioning are affected. However, the WHO recognises ME/CFS as a neurological
disease. In some many cases of ME/CFS infectious illnesses like glandular fever, and
other viral infections, may precede or trigger the onset of the condition. There is no
evidence however that persistent infection is responsible for the continuation of
fatigue and associated symptoms. Some studies have shown persistent enteroviral
infection in the muscles, and this may be responsible for the continuation of fatigue and
associated symptoms. It is likely that a number of biological, psychological and social
factors play a part in both the onset and the perpetuation of the illness. Although the
aetiology is not fully understood, factors may include an altered stress hormone
response, altered immune response, insomnia, alterations of mood, beliefs and coping
25% ME Group Submission to DWP Draft DocumentV6 25 April 05
such as inappropriate balance of activity and rest. At this point, the aetiology is not
fully understood, but some factors have been found in the disturbance of the immune
system and the autonomic nervous system. (Although some people feel the factors we
have crossed out may exacerbate the condition in some cases, these are potential
perpetuating factors rather than part of the aetiology of the condition itself.) Different
factors are likely to be important in different people. Possible causes of the condition
have been the subject of much debate.
4. In recent years steps have been taken by experts to formulate criteria by which a case
of ME/CFS can be defined. The symptom of fatigue is a feeling (‘feeling’ could be
taken to mean emotion – the fatigue of ME/CFS is a symptom not a feeling) Fatigue is
a symptom that can be difficult to describe and quantify. It is a perception of abnormal
tiredness or lack of energy in excess of that anticipated in response to current activity.
Fatigability is the perception of abnormal tiredness brought on by exertion. At any given
time up to a fifth of the population will complain of abnormal fatigue. ME/CFS is
identified by its symptoms and disabling effects, and by excluding other medical
conditions that could explain them. There are no confirmatory abnormal findings on
physical examination, nor any specific investigation such as an abnormal blood test
that is diagnostic. (This is inaccurate as ME/CFS , in fact, cannot be diagnosed without
physical (neurological) symptoms. People with ME/CFS do not suffer only from
abnormal fatigability, but also from post-exertional malaise (one study shows abnormal
production and dispersal of lactic acid in the muscles) as well as a range of
neurological, endocrinological and immunological abnormalities. Some symptoms
relate to the autonomic nervous system.) It is important and useful to define the
syndrome such that research into the cause of the condition and evaluation of effective
treatments can be undertaken.
5. A consensus definition of research criteria for chronic fatigue syndrome agreed by
international experts includes the following:However the CDC criteria, were primarily intended for research purposes and not for
clinical definition. Because the CDC emphasises fatigue as the sole compulsory
criterion, it has attracted criticism for allowing disparate fatigue conditions, for example
post-traumatic stress disorder, depression and conditions that improve with exercise to
be diagnosed as CFS/ME; the CDC definition is increasingly viewed as being too
broad and indistinct to be useful. Our group has adopted the Canadian diagnostic
criteria as we feel they are more appropriate to ME/CFS.
A complaint of:

Persistent or relapsing fatigue for 6 months or more that is
 Of new or definite onset
 Not the result of ongoing exertion
 Not substantially alleviated by rest
 Results in a substantial reduction in previous levels of
occupational, education, social or personal activities

Four or more of the following symptoms for 6 months or more
 Impaired short term memory or concentration
 Sore throat
 Tender lymph nodes (neck or armpits)
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



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Muscle pain
Pains in number of joints (without arthritis)
Headache
Unrefreshing sleep
Malaise after exercise lasting more than 24 hours. Malaise lasting
more than 24 hours after minimal exertion or exercise.
Other physical causes of fatigue such as anaemia, thyroid disease, sleep
apnoea, malignancy, liver disease etc. are excluded
Major mental health disorders are excluded, although people with ME/CFS may
have such as depression and generalised anxiety disorder other conditions
occurring at the same time.
6. A number of medical conditions such as fibromyalgia, irritable bowel disease, migraine
may also occur in people with ME/CFS. ME/CFS is similar to other diseases, yet great
care must be taken not to carry the comparison too far. As McLaughlin (2004) warns :
‘these [illnesses] may coexist with other conditions as well and are viewed as separate
entities which stand on their own, regardless of whether a person has other medical
problems. Even though there are similarities or overlap does not mean that they
represent the same etiological or pathobiological process.’ (McLaughlin, Jill, 2004, "Information on
Myalgic Encephalomyelitis (M.E.)/Chronic Fatigue Syndrome (CFS)" These have some symptoms in common
with those described in ME/CFS. Prolonged fatigue is also seen in common mental
health disorders such as anxiety and depression. Prolonged fatigue is also seen in
many other disorders such as multiple sclerosis, anxiety, anaemia, depression, AIDS
and leukaemia. Despite fatigue being seen in mental health disorders, it is important
not to confuse ME/CFS as a mental health disorder. Hyde (2003), for example, found
that less than 5% of ME/CFS sufferers " have any significant psychiatric illness. "
ME/CFS is a WHO acknowledged organic neurological illness.
How common is ME/CFS
7. It is estimated that around 0.4% of the UK population have ME/CFS. It is
predominantly a disease of young adults (between 25 to 50 years) and occurs in all
socio-economic groups. It appears to be more common in women [female: male 23:1]. All autoimmune disorders have a female preponderance due to hormonal
influences. Adolescents may also develop the condition, although less commonly than
adults. It is rare before puberty, but may does occur in children.
Risk factors
8. Although the cause of ME/CFS is unclear certain factors may be important in its
development. These are usefully divided into predisposing, precipitating and
perpetuating factors. The aetiology and pathogenesis of ME/CFS are not fully
understood. Some people may be predisposed to the condition because of their
genetic makeup, their personality, (Recent research by Dr Derek Pheby, failed to find
any link between personality and severe ME/CFS) or gender. For example the
condition is commoner in young women. An infectious disease such as glandular fever
(infectious mononucleosis) or a major physical illness may precipitate the condition.
Other life events such as marital separation or redundancy may precede development
of ME/CFS (We agree that psychological stress can make people more susceptible to
physical illness, but it feels inappropriate here to speculate that dilemmas are a
particular factor in the development of ME/CFS, as we are unaware of any evidence for
25% ME Group Submission to DWP Draft DocumentV6 25 April 05
this.) particularly if the life event involves an irresolvable dilemma. Finally some
individual circumstances may perpetuate the condition in some people and be a barrier
to early recovery. The Chief Medical Officer (2002) warns that exercise-based regimes
advocated for less severely affected patients tend not to have been studied among
those most severely affected. (Department of Health (2002) Annexes to the Report of the Chief Medical Officer of an
Independent Working Group, London . For example, beliefs that exercise is damaging, pervasive
inactivity or a concurrent mood disorder. (There is much evidence that exercise can
indeed be damaging, and how can anyone distinguish between ‘pervasive inactivity’
and severe disability? We feel this sentence does not encourage respect for patients’
experience, and we strongly recommend that it be deleted.)
Clinical features
9. The main symptoms are persistent mental and physical fatigue, tiredness or exhaustion
usually made worse by activity. People do not sleep well and find that sleep fails to
refresh them. Often they feel symptoms like pain, malaise, breathlessness and
(breathlessness is much less frequently reported than pain and malaise) dizziness in
relation to physical activity, even minor exertion within the home environment. Muscles
and joints ache and are painful. Headaches, sore throat and tender lymph glands in
the neck and armpits are described. People with the condition also report subjective
memory loss and poor concentration. Their mood may be low and they may be prone
to symptoms of anxiety such as panic attacks. Hypersensitivity to everyday levels of
noise and light are reported.
The symptoms of severe ME/CFS are much more detailed and much more severe
than described here. Crowhurst (2004), for example, describes how every morning : "I
am so tired I cannot wake up properly and I fall back into two or three further bouts of
sleep. Each time the pain, paralysis, numbness, prickling, itching, burning sensations
worsen in my whole body. My face, eyes and scalp also burn and itch, my lips are
numb, I can barely breathe if it has grasped hold of my chest muscles and diaphragm.
(NB: The above comment could possibly be used as an illustration within the
document)
10. People with ME/CFS may also describe much variation in the level of symptoms. Pain,
fatigue and other symptoms may vary in its severity during the course of the day, or
may be considerably worse for several days after undertaking inappropriately high
levels of physical or mental activities beyond the limits of the individual’s illness. This
may include basic activities of daily living. Muscle pains may fluctuate in a similar way.
11. Those whose fatigue is mild may continue to undertake a range of normal daily
activities. Some people will be able to carry out their occupation but have to reduce
their social activities. Those with more severe forms of the condition are likely to be
unable to continue at work or in education. Daily living activities, hobbies interests and
social interaction are also likely to be reduced. In the most severe cases the individual
may spend most of the day resting, or be bed ridden. Some people may need to use a
wheelchair outside to minimise the fatigue engendered by walking to avoid
exacerbating their condition. Others are too ill to use a wheelchair.
The more severely affected may suffer variable muscle weakness. There is danger of
falling or stumbling. They may not be able to use hands, fingers to perform fine
movements. They may not be able to walk, write, type, clean or attend to personal
care.
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12. About half of people with ME/CFS attending hospital clinics are in part-time or full time
employment or education while approximately one quarter are severely ill and house or
bedbound. When compared to people with other diseases like diabetes mellitus or
arthritis seen in hospital clinics people with CF/ME ME/CFS rate themselves as much
more disabled.
13. Physical examination is normal in most cases. Some people who rest a lot may have
postural hypotension. (Normally blood pressure is lower when sitting or lying in bed, on
standing up it rises. In some people, in particular the elderly, there is a lag phase - a
time interval - during which the pressure rises to the higher level. This may be
perceived as a sensation of dizziness or light headedness, and sometimes in the
elderly leads to falls. The effects of postural hypotension can be counteracted by sitting
on the edge of the bed prior to standing allowing the blood pressure to equilibrate).
Those who rest in bed for prolonged periods or who walk infrequently may have some
observable muscle wasting, most likely to be found in the lower limbs.
One of the doctors who has studied blood pressure abnormalities in ME/CFS (Dr David
Bell), feels that orthostatic intolerance is a key clinical feature of the condition and not a
result of deconditioning. In his research, the blood pressure of people with severe
ME/CFS became increasingly abnormal in the upright position. The pulse pressure
was affected, the pulse became weaker and did not normalise with time; it became
increasingly abnormal until the patient collapsed. Your original paragraph describes a
different type of orthostatic intolerance. That described in ME/CFS by Dr Bell would
not be helped by sitting on the edge of the bed, as it is not necessarily an immediate
dip in blood pressure, and does not normalise after a time lag. Other such research
from around the world has also shown this abnormality.
A standard physical examination is unlikely to reveal any abnormalities, even in those
severely ill. There may be some observable muscle wasting, most likely to be found in
the lower limbs, but there may be no obvious muscle wastage even in patients with
severe levels of disability. There may be blood pressure abnormalities, which prevent
the patient from maintaining an upright (sitting or standing) posture for long periods, but
the test to detect this is traumatic for the patient and time-consuming, and a quick blood
pressure test is unlikely to detect it.
14. People with ME/CFS require an individual open minded approach to treatment
which including includes exploring and understanding their beliefs about how the illness
and how it affects them both physically and emotionally. An explanation that the
syndrome is not progressive or life threatening is an important initial step. This illness
can sometimes follow a progressive course, and in some severe cases it is lifethreatening. More frequently it causes severe suffering and disability over many years,
often only ending when the patient dies. A collaborative approach to treatment is used
where doctor and patient discuss the different options with a view to reducing disability.
The aim of rehabilitation and treatment is to enable the person to improve their quality of
life by returning in a gradual way to usual daily activities, education or work. (It is
unrealistic to expect or demand this of those who severely ill with ME/CFS . According
to US statistics provided by the Centre for Disease Control, only 4% of patients had full
remission (not recovery) at 24 months.) Cycles of severe relapse are common, as are
further symptoms developing over time. Around 30% of cases are progressive and
degenerative and, sometimes ME/ICD-CFS is fatal. (ME Society of America : http://www.cfidscab.org/MESA/framework.html
25% ME Group Submission to DWP Draft DocumentV6 25 April 05
We feel that it is obvious that the aim of treatment is to reduce disability and to return to
usual daily activities; that is the ideal for all treatments. But we feel that this part of this
sentence ignores what Dr Melvyn Ramsay (the first doctor to describe M.E. in the
1950s) called “the alarming tendency for this illness to become chronic.” Many sufferers,
especially the severely affected, have been ill for a decade or more. To say that it is
possible for them ‘to return in a gradual way to … education or work’ is unrealistic. It is
helpful to address both the physiological and psychological effects of the illness, and to
minimise the results of prolonged rest or immobility. (For example, calcium and vitamin
D tablets may reduce the risk of osteoporosis). A variety of treatments as described
below may be tried either individually or in combination. Those described below all
involve establishing a sustainable baseline of activity as the first step.
Graded exercise and activity therapy
15. Supervised and gradually increasing physical activity will may enable the majority of a
minority of people who are mildly affected to improve and some to return to a normal
level of functioning. This is likely to be undertaken with the help of a physiotherapist
(using graded exercise therapy pacing techniques) (Graded Exercise Therapy (GET) is
positively harmful to those with strictly defined ME. Action for ME (2001) for example
found that : “Graded exercise was reported to be the treatment that had made most
people worse” and similar findings were found from the 25% ME Group’s, Severely
Affected Report March 2004) or an occupational therapist (using life style management)
within a hospital or clinic setting. Caution is required since over-activity, or increasing at
too fast a rate, may lead to relapses and has caused long-term deterioration in a
significant number of cases. (Around 25-30 % of sufferers, the severely affected, will
still "remain permanently, severely disabled and dependent on others" (DH 2002)).
Also, an Analysis Report by the 25% M.E. Group, (March 2004) found that of the 39%
who had used Graded Exercise Therapy, a shocking 82% reported that their condition
was made worse by this treatment. We feel it is vitally important to advocate caution
with this therapy given the experience of our members.
Cognitive behavioural therapy
16. Cognitive behaviour therapy (CBT) is used in ME/CFS to help people to examine their
interpretation of symptoms such as fatigue or muscle pain, which they may perceive as
damaging to their bodies, and as a result avoid activities that appear to precipitate them.
People are encouraged to view such symptoms as reversible physical and
psychological processes rather than evidence of a fixed or progressive disease process.
Understanding the illness, addressing fears and where appropriate reinterpreting the
disabling symptoms allows the person to make a gradual improvement in their level of
functioning and well being. Sleep is improved and graded increases in activity become
possible over some weeks or months.
In our opinion, this paragraph could do with being re-written. Please find below a
suggested new paragraph.
Cognitive Behaviour Therapy (CBT) is used in ME/CFS to help improve patients’ skills
in managing their condition. In particular, patients are encouraged to explore the
interconnection between their activity level and their symptoms in order to understand
any patterns to their symptoms, and to aim for the optimum balance of activities for the
individual. CBT is especially useful in examining unhelpful thoughts, which may make
25% ME Group Submission to DWP Draft DocumentV6 25 April 05
activity management difficult. For example, the belief that one must complete an activity
in a single session or that being inactive makes one worthless. Improved management
of the illness has enabled some people to make a gradual improvement in their level of
functioning and/or well being. It should be noted that ME/CFS is a neurological condition
and the CMO’s Report 2002 said that only 7% of sufferers were helped by this type of
therapy.
The hypothesis being presented here is based on the erroneous assumption that "
the patient's impairments are learned due to wrong thinking, and "considers the
pathophysiology of CFS to be entirely reversible and perpetuated only by the interaction
of cognition, behavior, and emotional processes. According to this model, CBT should
not only improve the quality of the patient's life, but could be potentially curative".
However : "This hypothesis is far from being confirmed, either on the basis of research
findings or from its empirical results. Nevertheless, the assumption of its truth by some
has been used to influence attitudes and decisions within the medical community and
the general cultural and social milieu of ME/CFS. To ignore the demonstrated biological
pathology of this illness, to disregard the patient's autonomy and experience and tell
them to ignore their symptoms, all too often leads to blaming patients for their illness
and withholding medical support and treatment. " ( Carruthers et al (2003) "Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols" which
appeared in the Journal of Chronic Fatigue Syndrome, Vol. 11(1) 2003, pp. 7-115, ) .
Pacing
17. Pacing is a lifestyle management approach in which the person with ME/CFS is
encouraged to live within the limits of their illness and energy levels carefully avoiding
over activity. Activity is increased gradually where possible and reduced in the event of
prolonged symptom development. Medical research has not shown to date that this
treatment option is beneficial, unlike graded exercise therapy and cognitive behavioural
therapy which are supported by research trials. Surveys of patient support groups
suggest that patients consider this the most effective treatment option, but medical
research on pacing is still at trial stage especially with the severely affected.
(NB: The following comment relates to paragraphs 15-17:- CBT/GET and Pacing have
been postulated as appropriate interventions for CFS; they continue to be the subject of
much controversy amongst specialists from different fields of study. Because no
differentiation is made between the differing sub-groups of CFS it can be difficult to decide
on an intervention which suits every patient. The 25% ME Group would like to suggest that
patients who suffer from CFS/depression should be offered CBT/GET as this type of
illness may respond to these therapies. Where there is a possibility of neurological
involvement (ie. the patient’s symptomatology includes photophobia, blurred vision,
paresthesia, tinnitus, balance problems and hyperacusis) then these patients (who suffer
from CFS/ME) should be offered PACING and advice on developing coping strategies for
dealing with this very variable illness. It is important not to push those with CFS/ME into
CBT/GET as many patients who have tried these therapies have suffered irreparable
damage; those who were ambulant are now wheelchair or bed-bound).
Medication
Why mention medication for co-morbid conditions before medication for the illness
itself? How about re-ordering the paragraph as follows:
25% ME Group Submission to DWP Draft DocumentV6 25 April 05
18. Simple analgesics and non steroidal anti-inflammatory drugs are also used to alleviate
pain in muscles and joints, although often with limited success. Antidepressants may
improve sleep and relieve pain in low doses (e.g. amitriptyline, trimipramine) be very
helpful in treatment of co morbid conditions such as depression or insomnia. In
standard doses they can elevate mood or relieve anxiety in standard doses
(eg.fluoxetine, sertraline, citalopram). Other medication may be used depending on
symptoms. Other pain relief such as Gabapentin has also been shown to be useful for
ME/CFS.
Is ME/CFS a physical illness?
19. ME/CFS has been identified by the World Health Organisation as an organic
neurological illness since 1969. Since a definite cause for ME/CFS has not been
identified there has been much debate as to whether it is a physical illness or not.
Some authorities have put forward the argument that it is a purely psychological
disorder citing the a high rate of associated anxiety and depression. (Despite fatigue
being seen in mental health disorders, it is important not to confuse ME/CFS as a
mental health disorder. Hyde (2003), for example, found that less than 5% of ME/CFS
sufferers " have any significant psychiatric illness. " ME/CFS is a WHO acknowledged
organic neurological illness.)
Others are equally sure that it is purely physical citing the abnormal hormonal tests
found in some or the triggering of the illness by certain infections. It is clear however
that the term ME/CFS describes a spectrum of disorders in which both physical and
psychological cognitive functioning is affected. It is likely that ME/CFS is due to a
combination of factors. For example poor sleep is a symptom found in both physical and
psychological illnesses. Whatever the cause e.g. painful joints in arthritis or a disturbed
sleep pattern in depression, the person may feel tired -the next day and be unable to
concentrate on tasks that require application to detail. The reality is that a full
understanding of the condition requires consideration of both physical and psychological
factors.
This section is very limited in its scope and is unnecessary in this context as it is
supposed to be guidance for BAMs doctors assessing the affects of disability on the
patient, not whether it is physical or not.
Course of illness and prognosis
20. People with mild illness may recover spontaneously, or with some general advice or a
limited treatment programme over the course of six to twelve months. These people are
likely to be treated in a general practice setting. (According to US statistics provided by
the Centre for Disease Control, only 4% of patients had full remission (not recovery) at
24 months.)
21. People with established ME/CFS of moderate severity lasting one to two years are likely
to need to undertake a more extensive programme of treatment, as described above,
lasting 6 to 12 months. Most people who attend hospital for treatment will may make a
significant improvement with appropriate treatment. Some people will may recover fully,
but some may not achieve never regain their previous level of functioning. However,
their level of disability and quality of life can may be much improved.
25% ME Group Submission to DWP Draft DocumentV6 25 April 05
There should be a word of caution here about treatment types as it has been shown to
be the experience of many ME patients that relapse often follows the use of
psychologically-based treatments, although people with chronic fatigue (F48) may
benefit from CBT/GET.
22. Severe cases are less likely to recover completely or benefit substantially from a
treatment programme. Recovery from severe ME/CFS is extremely rare, about 2%.
Bassett (2004 op cit) states "ME/ICD-CFS is a life-long disability where relapse is
always possible. Cycles of severe relapse are common, as are further symptoms
developing over time. A belief that the condition is not amenable to treatment tends to
predict a poor prognosis. Anyone whose condition is not amenable to treatment is likely
to believe as much. To suggest that it is the belief causing the poor prognosis is
illogical.
This is a psychiatrically-biased statement and has no scientific justification whatsoever
for this neurological illness. The main "treatments" on offer remain psychiatric, and what
few trials there have been , tend not to deal with the house and bed- bound . As Abbot
(2004) (Abbot N (2004) Severely Overlooked by Science — An Overview of Research on Severely-ill People with ME,
http://www.25megroup.org/Information/Medical/Severely%20overlooked%20by%20science.htm) .points out : " very few
studies exist, and all define "severe illness" in different ways, complicating interpretation
of the findings.”
23. Indicators of a good prognosis


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
Male sex (This may be more to do with different types of immune response
(T1/T2) than with gender per se.)
A definite history of an acute viral illness like glandular fever at the onset and
occurring on an uncomplicated psychological background
Mild disability and few symptoms
Clinical features showing a pattern of evolution towards functional recovery
Early diagnosis aimed at eliminating associated other physical disorders and
identifying psychiatric illness along with other complicating psychological or
social factors
A management approach which encompasses physical, psychological and
social elements that allows a stepwise approach to functional improvement
The illness is variable, not static. A step-wise approach is not therefore
possible. Functional improvement will only be possible on a variable basis.
The role of a psychologist should be aimed at supporting patients through
difficult times and helping to develop coping strategies for these.
24. Indicators of a poor prognosis
o Onset of symptoms without any clear precipitating factor, but set against a
complex background of adverse psychological and social factors, or with
This point exemplifies the unproven viewpoint that patients are ill due to
psychological and social factors. There is no evidence for this, only opinion.
An onset following a severe infective illness which may be long-lasting and
unremitting
o Clinical features characterised by severe and unremitting symptoms
o Self diagnosis where the sufferer becomes convinced of a single cause to
the exclusion of all others. What is the evidence for this? We know there is
some evidence that a late diagnosis may lead to a worse prognosis. In these
25% ME Group Submission to DWP Draft DocumentV6 25 April 05
circumstances patients may be forced to self diagnose, but it is the late
diagnosis that is the real issue.
o A management approach that overemphasises the importance of either
complete rest or which advocates a rapid return to pre-illness levels of
physical activity. We are not aware of anybody advocating either of these
approaches so wonder why this has been included. One which does not
recognise the need to treat such features of depressive illness, if such is
evident, or sleep disturbance (There are times when total bed-rest is the only
option, but most patients do get up and function as and when they can. Noone wants to waste their life in bed. No-one involved in the management of
severe cases should pre-assume that depressive illness is present. ME/CFS
is NOT a depressive illness, and should not be routinely treated as such.)
o Lack of practical support
Functional restrictions
The original document includes more information on mild cases than it does on severe
ME/CFS, even though those requiring DLA and other benefits are likely to be more
severely affected. As you say in the Appendix, the definition of CFS requires that the
illness ‘results in a substantial reduction in . . . . activities’, so even mild ME/CFS is
disabling.
25. Mild condition
Symptoms vary considerably and each case should be considered individually. The
person would normally to be able to wash, dress, bathe, use the toilet, get up and
downstairs without difficulty. The ability to plan a meal is likely not to be impaired and
the tasks involving involved in preparing and cooking food are unlikely to be
significantly restricted in any way, although they may need to rely on basic meals. The
ability to walk long ordinary distances (eg. when shopping) may be reduced by fatigue,
but the person is likely to be able to walk on an unrestricted basis short distances
most of the time. In most cases their judgment, thought processes and means of
communicating are not affected such to the extent that they would be unable to find
their way around in familiar and unfamiliar places.
26. Moderate condition
Those with a moderate level of disability would be expected are likely to be able to
manage personal care and preparation of food without help from another most of the
time. Tasks may take longer than normal and may need to be followed by a short
period of rest. Total level of activity is likely to be significantly reduced, and strategies
needed to meet personal care and food needs – for example shopping for food and
cooking may need to be done on different days and frozen food may be needed.
Although the level of fatigue symptoms may vary during the day or from day to day, the
ability to maintain personal hygiene and nutrition is likely to be unimpaired.
The ability to walk may is likely to be restricted by fatigue (Fatigue is only one of the
symptoms, and other symptoms may be even more disabling in some cases.) in
moderate cases, but, since neuromuscular function is normal, (Are you sure about
that? Do you just mean that abnormalities have not been found?) severe restriction of
walking is unlikely. Some people may prefer to walk with a stick and others use a
wheelchair outside. They are unlikely to be able to self-propel any significant distance.
25% ME Group Submission to DWP Draft DocumentV6 25 April 05
However, even those who use a wheelchair outside could be expected to walk up to
100 – 200 metres most of the time. 100 – 200 metres is likely to be a significant walk
for someone with moderate disability, not something they can perform ‘most of the
time’. We do feel this sentence underestimates moderate M.E./CFS and could lead to
people with major mobility problems being denied the benefits to which they are
entitled. Of our members (who have severe M.E./CFS), although 59%were turned
down at their first application for DLA, the vast majority (85%) were successful at
appeal. So we would draw to your attention that initial underestimates of disability in
M.E./CFS are costing the system a lot of money (Analysis report by 25% M.E. Group,
March 2004).
27. Severe condition
People who spend most of the day in bed or otherwise immobile, and who have
clinically evident muscle wasting may need some help with personal care and
preparing food. A small minority with muscle wasting of the lower limbs may be
severely restricted in their ability to walk
There is unlikely to be any requirement for supervision either at home or out of doors,
since impairment of cognitive function usually only mild.
Most of our members are severely restricted in their ability to walk – we would say this
is true of the majority of people with a severe condition. Muscle wasting is not always
evident even in severe disability.
In many cases of severe ME/CFS, cognitive function is severely impaired – patients
may be unable to watch TV, listen to the radio, or communicate for longer than a few
minutes, if at all. Patients report feeling semi-conscious, forgetting what they are doing
or where they are going and muddling words. Most people with severe M.E. are rarely,
if ever, able to go out without assistance, so to say that they are unlikely to require
supervision out of doors feels inaccurate. Here is a suggested alternative paragraph.
People with severe ME/CFS may need help with all aspects of day-to-day living,
including personal care and preparing food. They may spend much or all of the day in
bed or otherwise immobile, and be severely restricted in their ability to walk. The ability
to use a wheelchair may also be severely restricted. All activity is likely to be reduced,
including activities such as conversation, watching TV and sitting up.
People with severe ME suffer "brain fog" which is highly disabling and many will
require supervision for their own safety in a range of life needs.
Some people have lost the use of their arms and will require to be spoon-fed, bedbathed and toileted. Patients’ needs will vary and attention should be paid to this.
25% ME Group Submission to DWP Draft DocumentV6 25 April 05
APPENDIX 1
Pop up screens for ME/CFS
Admission for hospital treatment
Many people with CFS receive their medical care in the community from the general
practitioner who works in conjunction with physiotherapists, occupational therapists and
other health care professionals. Some people will be referred to hospital clinics where they
maybe under the care of general physicians, rheumatologists, rehabilitation experts,
neurologists or psychiatrists with a special interest in the condition. These services are
likely to be run by multidisciplinary teams with specialist nurses, physiotherapists,
occupational therapists etc. In some parts of the country there are a few hospital clinics
providing dedicated services for people with ME/CFS. Provision of services however
varies greatly throughout the country.
Most people with ME/CFS referred to a specialist will be seen in a hospital clinic. Some
people may be admitted to hospital for a short time for assessment, including special
investigations if the diagnosis is unclear. A minority, only those with the most severe
condition, will be admitted to hospital for treatment but treatment is limited. A report by
Action for ME (‘Severely Neglected’) found that many patients relapsed in the hospital
environment. Worryingly, more patients reported having been made worse than better.
Most patients are treated at home most of the time, not because they are not severely ill,
but because there is little that hospital can offer. This is likely to include people with
marked functional restrictions who are too unwell to travel for treatment or to be treated at
home.
It should also be noted, that at no time can a patient be detained in hospital for treatment
like CBT and GET, as these psychological interventions are in the most part unproven and
have been shown to be unhelpful and harmful.
Clinical Examination
A standard clinical examination is unlikely to reveal any abnormalities usually normal in
the majority of people with CFS. There is at present no one specific test for ME/CFS, more
specific investigations are usually required in order to diagnose the condition e.g. MRI,
PCR, muscle biopsy and more detailed blood screening. This sentence implies that there
are no neurological or musculoskeletal abnormalities in ME/CFS, which is not the case. It
is true, however, that a standard clinical examination is unlikely to reveal these
abnormalities.
Specifically there are no abnormal signs found in the neurological or musculoskeletal
systems.
In severe condition those people who rest in bed for prolonged periods or who walk very
infrequently may have some observable muscle wasting, most likely to be found in the
lower limbs.
25% ME Group Submission to DWP Draft DocumentV6 25 April 05
Paraesthesia can occur uncommonly and may raise suspicion of early MS. However, eye
movements are usually normal. Test of balance and coordination are frequently abnormal.
The plantar response is usually flexor but tendon reflexes may be brisk.
Prescribed Aids, Appliances and Adaptations
Prescribed aids, appliances and adaptations( also known as assistive equipment) may be
used by people with chronic fatigue syndrome.
For a moderate condition, a person may utilise prescribed hand held equipment (such as
kitchen or dressing aids, the use of a walking stick or bath/toilet equipment) for at least a
part of the day.
For a severe condition, the use of a wheelchair or electric mobility vehicle may be required
or the person may be bedridden much or all of the time. Permanent recommended home
adaptations such as a stair lift and adapted access to property may be necessary.
Reliance on such prescribed assistive equipment may be necessary for much or all of the
day or patients may be too ill to utilise the equipment.
Although people are at liberty to acquire assistive equipment on their own initiative, only
prescribed assistive equipment relates is considered as relating to the severity of the
condition.
This seems severe, especially given the difficulty many patients with this condition
experience in getting access to medical services. A survey of our members found that
although 58% were unable to travel to their GP’s surgery, over half of these never receive
home visits from their doctors (Analysis Report by 25% M.E. Group, March 2004).
However, if this is standard procedure for all conditions, I suppose we must accept that. If
it is not standard, then this is surely one condition where privately acquired equipment is
especially relevant.
Such prescription follows a thorough assessment of the person’s functional limitations by a
qualified professional. Normally this is performed by an Occupational Therapist, working
as part of a multidisciplinary team. Physiotherapists, general practitioners, hospital doctors
and other professionals in the multidisciplinary team may also be involved in the
prescription of such equipment.
Where has the customer been medically assessed?
Many people with ME/CFS receive their medical care in the community from the general
practitioner who works in conjunction with physiotherapists, occupational therapists and
other health care professionals. Some people will be referred to hospital clinics where they
maybe under the care of general physicians, rheumatologists, rehabilitation experts,
neurologists or psychiatrists with a special interest in the condition. These services are
likely to run by multidisciplinary teams with specialist nurses, physiotherapists,
occupational therapists etc. In some parts of the country there are a few dedicated hospital
clinics providing services for people with ME/CFS. Provision of services however varies
greatly throughout the country.
25% ME Group Submission to DWP Draft DocumentV6 25 April 05
People with mild condition are likely to be assessed and cared for by their general
practitioner at the surgery or health centre.
Those referred to a specialist will usually be assessed in a community or hospital clinic by
one or more members of the multidisciplinary team.
People with severe condition may be too unwell to travel to a clinic. Arrangements will be
made for them to be assessed at home either by a doctor or other healthcare professional
from the specialist multidisciplinary team.
Symptoms of ME/CFS
The following symptoms can be considered in evaluating the condition. They are based on
consensus definition of research criteria used by international experts:a. Persistent or relapsing fatigue for 6 months or more that is
1.
2.
3.
4.
Of new or definite onset
Not the result of ongoing exertion
Not substantially alleviated by rest
Results in a substantial reduction in previous levels of
occupational, education, social or personal activities
ii. Four or more of the following symptoms for 6 months or more
1.
2.
3.
4.
5.
6.
7.
8.
Impaired short term memory or concentration
Sore throat
Tender lymph nodes (neck or armpits)
Muscle pain
Pains in number of joints (without arthritis)
Headache
Un refreshing sleep
Malaise after exercise lasting more than 24 hours
Malaise lasting more than 24 hours after minimal exertion
25% ME Group Submission to DWP Draft DocumentV6 25 April 05