Fergus Bescoby writes about the symptoms and life cover implications for ME.
Myalgic encephalomyelitis or chronic fatigue syndrome, also known as ME, CFS or post-viral fatigue syndrome (PVFS), is a condition that causes extreme physical and mental tiredness that seriously interferes with a person's daily life.
During the 1990s, the term ‘chronic fatigue syndrome' (CFS) came into vogue. Since there was no specific diagnostic test for ME, and since post-exercise ‘fatigue' was one of its prominent symptoms, people with ME began to be diagnosed with ‘CFS'.
In recent years, however, there has been a growing recognition that the diagnosis ‘CFS', based on a list of vague non-specific symptoms, is so broad that it encompasses a range of diverse patient groups.
It is a contentious illness because for years medical professionals refused to recognise it - often being dismissed as "yuppie flu", despite causing years of complex problems.
Currently it is estimated that some 250,000 people in Britain are affected by this illness.
ME is characterised by a range of neurological symptoms and signs, muscle pain with intense physical or mental exhaustion, relapses, and specific cognitive disabilities.
Early reports dating from 1934 described epidemics of the illness, such as the 1955 outbreak at the Royal Free Hospital in London. Nowadays however, it is more common for endemic (sporadic) cases to be identified. It is believed that certain historical figures such as Florence Nightingale suffered with the illness.
The World Health Organisation's International Classification of Disease lists ME as a disorder of the nervous system, under Post-Viral Fatigue Syndrome.
The syndrome leaves a chronic aftermath of debility in a large number of cases.
The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time the sufferer persists in physical effort after its onset. It is felt that people who are given a period of enforced rest from the onset have the best prognosis.
Although the onset of the disease may be sudden and without apparent cause, there is practically always a history of recent virus infection associated with upper respiratory tract symptoms.
As with many chronic illnesses, fatigue may be present, but in ME patients the fatigue is post-exertional, often delayed, and quite unlike the ‘fatigue' experienced by healthy people.
Instead of making a normal recovery, the patient is dogged by persistent profound fatigue accompanied by a variety of symptoms, including the following:
muscle fatigue, muscle pain, cramps, pins and needles
general ‘flu like' feeling
fluctuating body temperature
abnormal exhaustion - unrelieved by sleep
headaches and migraines
some disturbance in brain function - including: loss of concentration, loss of short term memory, acquired dyslexia
clumsiness and disturbed balance, misjudgement of distance,
sensitivity to light or other problems with vision,
sensitivity to noise, tinnitus (ringing in the ears)
allergies or sensitised reactions to foods, chemicals or touch
mood swings, anxiety and depression
What is the cause?
The cause of ME is still unknown, but there is unlikely to be one single causative. Several early epidemics appear to have been triggered off by an outbreak of an infection with enteric organisms or poliovirus which then subsided, and many patients report an infectious onset to their illness.
However, in others, there may have been a variety of contributing factors, including infectious, traumatic, environmental and endogenous, all of which can lead on to a condition which shares a set of common symptoms.
To meet the diagnostic criteria of chronic fatigue syndrome, the patient must have unexplained, persistent fatigue for six months or more, along with at least four of the following signs and symptoms:
loss of memory or concentration
enlarged lymph nodes in your neck or armpits
unexplained muscle pain
pain that moves from one joint to another without swelling or redness
headache of a new type, pattern or severity
extreme exhaustion lasting more than 24 hours after physical or mental exercise
Severity of symptoms
The severity of CFS/ME can roughly be divided into three levels:
Mild cases - you can care for yourself and can do light domestic tasks, but with difficulty. You are still likely to be able to do a job, but may often take days off work. In order to remain in work you are likely to have stopped most leisure and social activities. Weekends or other days off from work are used to rest in order to cope.
Moderate cases - you have reduced mobility and are restricted in most activities of daily living. The level of ability and severity of symptoms often varies from time to time (peaks and troughs). You are likely to have stopped work and require rest periods. Sleep at night tends to be poor and disturbed.
Severe cases - you are able to carry out only minimal daily tasks such as face washing and cleaning teeth. You are likely to have severe difficulties with some mental processes such as concentrating. You may be wheelchair-dependent for mobility and may be unable to leave your home except on rare occasions, and usually have severe prolonged after-effects from effort. You may spend most of your time in bed. You are often unable to tolerate any noise, and are generally very sensitive to bright light.
It must be noted that most cases are mild or moderate.
There is no known cure for ME/CFS although treatment may help to manage and ease the symptoms. There isn't one specific treatment that works for everyone. Most treatments are aimed at people with mild to moderate symptoms.
The following options are available:
Doctors suggest lots of rest during an attack or relapse along with maintaining a regular routine. Pacing is a way of managing lifestyle in order to find a level of physical and mental activity that is comfortable for the patient. Massage and stretching may help to relieve muscle pain.
Painkillers such as paracetamol or ibuprofen may help relieve muscle and joint pain, headaches and other physical symptoms. Antidepressants can be prescribed for depression.
Graded exercise therapy means starting with an activity that can be done comfortably, such as walking, and increasing levels of activity every few days.
Complementary therapies such as relaxation therapy, acupuncture, homeopathy or supplements such as coenzyme Q10 are sometimes recommended for people with ME/CFS. However, although some people may find them useful, there is very little scientific evidence to show that these are effective.
Cognitive behavioural therapy (CBT) is a short-term psychological treatment that helps to challenge negative thoughts, feelings and behaviour which can often be associated with ME.
Life cover can generally be accepted at standard rates once the underwriter is certain that the client has made a full and documented recovery and no residual neurological disability exists.
There is a significant morbidity risk with ME, with the condition frequently resulting in long periods of disability.
This can be put down to the nature of the illness, lack of appropriate treatment and the reluctance of those affected to accept this.
The natural course of the illness is a slow recovery with many individuals remaining disabled for years with no apparent signs of recovery. Depression can often play a large part in this illness and needs to be taken into account in the overall assessment.
The underwriter must be sure that the client is capable of working full time and that a definite diagnosis has been made before considering any form of disability cover.
- ME Research UK
- Hannover Re
- Patient UK
- NHS Choices
Fergus Bescoby is underwriting development manager at VitalityLife.