MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE
SYNDROME
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 depending on their severity are potentially disabling and may affect both
physical and mental functioning including cognitive function. Fatigue is usually
accompanied by a number of other symptoms such as flu-like malaise, muscle and
joint pain, headaches, poor sleep, poor concentration and memory.
2. 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 been identified. It is likely that the term
ME/CFS describes a spectrum of disorders in which physical and mental functioning
are affected. However, the WHO recognises ME\CFS as a neurological disease. In
many cases of ME\CFS infectious illnesses like glandular fever, and other viral
infections, may precede or trigger the onset of the condition. 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. 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. 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. 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. 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.
25% ME Group Submission to DWP Draft Document V6 25 April 2005
5. A consensus definition of research criteria for chronic fatigue syndrome agreed by
international experts includes the following: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)
 Muscle pain
 Pains in number of joints (without arthritis)
 Headache
 Unrefreshing sleep
 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 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. These have some symptoms in common with
those described in ME/CFS. Prolonged fatigue is also seen in many other disorders
such as multiple sclerosis, anxiety, anaemia, depression, AIDS and leukaemia.
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]. Adolescents may also develop the condition, although less commonly than adults.
It is rare before puberty, but 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, 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. Finally some
25% ME Group Submission to DWP Draft Document V6 25 April 2005
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).
Clinical features
9. The main symptoms are persistent mental and physical fatigue 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 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.
10. People with ME/CFS may also describe much variation in the level of symptoms. Pain,
fatigue and other symptoms may vary in severity during the course of the day, or may
be considerably worse for several days after undertaking 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 need to use a
wheelchair outside 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 of 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.
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 ME\CFS rate themselves as much more
disabled.
13. 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.
25% ME Group Submission to DWP Draft Document V6 25 April 2005
14. People with ME/CFS require an individual open minded approach to treatment which
includes exploring and understanding how the illness affects them both physically and
emotionally. A collaborative approach to treatment is used where doctor and patient
discuss the different options. The aim of rehabilitation and treatment is to enable the
person to improve their quality of life. 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.cfids-cab.org/MESA/framework.html).
It is helpful to address both the physiological and psychological effects of the illness,
and to minimise the results of prolonged immobility. (For example, calcium and vitamin
D tablets may reduce the risk of osteoporosis). A variety of treatments 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 may enable 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 pacing
techniques) 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.
Cognitive behavioural therapy
16. 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
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.
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. 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.
25% ME Group Submission to DWP Draft Document V6 25 April 2005
Medication
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). In
standard doses they can elevate mood or relieve anxiety (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. Some authorities have put forward the argument that it
is a purely psychological disorder citing a high rate of associated anxiety and
depression.
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
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.
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.
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 may make a
significant improvement with appropriate treatment. Some people may recover fully, but
some never regain their previous level of functioning. However, their level of disability
and quality of life may be much improved.
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.
23. Indicators of a good prognosis





Male sex
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 other physical disorders and psychiatric
illness along with other complicating psychological or social factors
25% ME Group Submission to DWP Draft Document V6 25 April 2005

A management approach which encompasses physical, psychological and
social elements that allows a stepwise approach to functional improvement
24. Indicators of a poor prognosis




An onset following a severe infective illness which may be long-lasting and
unremitting
Clinical features characterised by severe and unremitting symptoms
A management approach that overemphasises the importance of either
complete rest or which advocates a rapid return to pre-illness levels of
physical activity. One which does not recognise the need to treat such
features of depressive illness, if such is evident, or sleep disturbance
Lack of practical support
Functional restrictions
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 involved in preparing and cooking food are unlikely to be significantly
restricted, although they may need to rely on basic meals. The ability to walk ordinary
distances (eg. when shopping) may be reduced by fatigue, but the person is likely to be
able to walk short distances most of the time. In most cases their judgment, thought
processes and means of communicating are not affected 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 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 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
symptoms may vary during the day or from day to day, the ability to maintain personal
hygiene is likely to be unimpaired.
The ability to walk is likely to be restricted in moderate cases, but severe restriction of
walking is unlikely. Some people may walk with a stick and others use a wheelchair
outside. They are unlikely to be able to self-propel any significant distance.
27. Severe condition
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 Document V6 25 April 2005
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 will be admitted to hospital for
treatment but treatment is limited. This is likely to include people with marked functional
restrictions who are too unwell to travel for treatment or to be treated at home.
Clinical Examination
A standard clinical examination is unlikely to reveal any abnormalities 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.
In severe condition people may have some observable muscle wasting, most likely to be
found in the lower limbs. 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.
25% ME Group Submission to DWP Draft Document V6 25 April 2005
Although people are at liberty to acquire assistive equipment on their own initiative, only
prescribed assistive equipment is considered as relating to the severity of the condition.
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.
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 lasting more than 24 hours after minimal exertion
25% ME Group Submission to DWP Draft Document V6 25 April 2005