M.E. (myalgic encephalomyelitis) is a chronic often disabling illness that effects the nervous and immune systems, and causes exhaustion, pain and problems with concentration and memory.

It is thought that 240,000 people in the U.K. have this disabling illness, though no official figures exist.

It can affect men, women and children of all social and ethnic backgrounds.  It ranges in severity, some people are mildly effected and continue to work; at the other extreme some are so severely affected that they are bed-bound, unable to move, speak or swallow.  Most sufferers are somewhere inbetween, some house-bound, some needing wheelchairs and all are struggling to find a balance whereby they can lead some kind of "normal" life.  All are trying to cope in their own way with the affects of this debilitating illness.

M.E. or C.F.S.?

M.E. is also known as C.F.S. (chronic fatigue syndrome). This is a controversial name, as many people believe that the two are not the same.  In fact many people believe that M.E. is a separate illness to C.F.S.  The name C.F.S. is like an umbrella title that can include other illnesses that have fatigue as a main symptom.  Other illnesses often grouped under the same umbrella are: P.V.S.(post viral syndrome), Fibromyalgia, G.W.S. (gulf war syndrome) and M.C.S. (multiple chemical sensitivities).

Diagnosis

There is no medical or laboratory test currently available, so doctors diagnose the illness by looking at the symptoms, the medical history, and the length of time the symptoms have been present.  One of the key symptoms is exhaustion after exercise.  Exercise in this context means physical movement of any kind, i.e. standing, walking dressing.

Symptoms

The symptoms of M.E. are many and varied;
 

Treatments

There is no specific treatment for M.E.

Trials are being conducted into some therapies, though these "treatments"
remain controversial.

The controversial "treatments" are G.E.T. (Graded Exercise Therapy) and
C.B.T. (Cognitive Behaviour Therapy). 

The effective "treatment" for sufferer's is pacing or managing their symptoms
and managing their energy levels, and in the first instance rest.

More can be found out about the above information on other M.E. sites listed
in our "Links".

Recovery

People with M.E. all experience a different severity and pattern of illness.

Some become acutely ill following an infection such as flu and have severe symptoms immediately.  Some become slowly worse over a few years and cannot pinpoint when their illness began.  It is generally accepted that if the illness is recognised early and the sufferers get enough rest they stand a better chance of recovering. In some people the illness becomes chronic and may last for years, during that time the severity will vary and many people will eventually improve though not completely recover.

In order to carry out research, doctors have drawn up a number of different ways of defining CFS. The one that is most widely used by researchers is the 1994 Fukuda et al definition. However, all of these research definitions have a number of important defects that limit their use in clinical practice, in particular the requirement for symptoms to be present for six months or more before a diagnosis of CFS can be made. Consequently, research definitions need to be applied with considerable flexibility if they are going to be used by doctors to make a diagnosis of ME/CFS

The clinical description of ME used by Dr Melvin Ramsay following the Royal Free outbreak has some important differences to the research definitions of CFS.
 

Fukuda et al research definition of CFS

1. Clinically evaluated, unexplained, persistent or relapsing chronic fatigue that is of new or definite onset (i.e. is not lifelong); is not the result of ongoing exertion; is not substantially relieved by rest; and results in a substantial reduction in previous levels of occupational, educational, social, or personal activities; and :
2. The concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue:
    

Self-reported impairment in short-term memory or concentration
Sore throat
Tender cervical (neck) or axillary (armpit) lymph glands
Muscle pain
Headaches of new type, pattern or severity
Unrefreshing sleep
Post-exertional malaise lasting more than twenty four hours
Multi-joint pain without swelling or tenderness
 

[Ref: Annals of Internal Medicine, 1994, 121, 953-959]


Dr Melvin Ramsay's description of ME

Dr Melvin Ramsay's original description of ME centred on three groups of symptoms that were seen in the patients at the Royal Free Hospital outbreak. The symptoms had a characteristic tendency to vary and fluctuate in severity, even during the course of a day.
 

• Muscle symptoms involving exercise-induced fatigue - often with a prolonged recovery period, spasms and twitchings, and areas of specific tenderness.
• Circulatory impairment including cold hands and feet, intolerance of temperature extremes, pallor of the face.
• Cerebral (brain) dysfunction including problems with memory and concentration, sleep disturbances, emotional lability and mood swings, mixing up words, frequency of urination, intolerance of loud noise, palpitations and tachycardia (rapid pulse rate).
   

[Ref: Myalgic encephalomyelitis and post viral fatigue states, Gower medical Publishing, 1988.]