What is CFS/ME?

CFS/ME is classified as a neurological illness by the World Health Organisation and the UK Health Departments, although due to the variety of symptoms it could be classified differently. It is a serious illness, not just a matter of feeling tired. The main symptoms can include: muscle fatigue, pain, weakness and aching joints, problems with memory and concentration, sore throat, digestive problems, sensitivity to light and noise, painful glands, chest and abdominal pain and headaches. More about the symptoms below.

Early Diagnosis and Advice is Essential

It is important to be seen early by an expert doctor who can give you correct diagnosis and advice. Many GPs are not familiar with the illness so you should ask for a referral to an expert consultant who will determine the appropriate treatment for you. A leading expert is Dr Amolak Bansal, who has now retired and who has written guidance for doctors “Investigating Unexplained Persistent Fatigue with a Particular Emphasis on CFS/ME” which reMEmber helped to fund. It can be accessed free online at http://www.biomedcentral.com/1471-2296/17/81/email

Pacing and avoiding prolonged/strenuous activity is essential.

Symptoms and Effects

Muscle fatigue and weakness can result in people being unable to perform everyday tasks like driving, shopping, typing or hanging out washing. The effect on the brain can be very worrying. One sufferer describes it as “like walking on rubber”. Another says “I’m unable to organise a taxi to get myself home from work when I have a bad spell”. Still another says “I can’t think straight. Not much makes sense.”

Patients can be house bound and in some cases even bed bound. However, some patients recover sufficiently well to return to work, although there may be times when the illness will be severe enough to prevent them from working. The number of people in the UK with CFS/ME has been estimated at 250,000. The figure for Sussex has been estimated at about 4,500. The illness seems to affect all age groups and social classes. It also affects both sexes although it seems to be commoner in women. Children and adolescents can be particularly badly affected; they can become more acutely ill.

CFS/ME is a real and disabling illness. It affects all age groups and social classes.

What Causes it?

The causes of the illness are not fully understood but the condition often starts after an infection such as ‘flu or glandular fever. It is sometimes called Post-Viral Syndrome (PVS) or Post-Viral Fatigue Syndrome (PVFS), although a virus is not involved in all cases. It can also follow a bacterial infection, and the condition has been known to follow surgery. Informed medical opinion is that the infection causes “ripples” in the immune system which make it malfunction. Normally the immune system switches off after an infection has gone but in CFS/ME sufferers it seems to continue producing chemicals that interfere with the nervous and endocrine systems. Typically this results in prolonging the “flu-like” feeling which most CFS/ME sufferers experience frequently; some have it all the time.

Research into the exact causes of CFS/ME is continuing. However, one thing is certain. The illness is not “all in the mind” although it definitely affects the brain. It is important to realise that, just like other neurological illnesses, CFS/ME has physical/chemical causes.

The exact causes of CFS/ME are not known, but it typically follows infection which appears to upset the immune, nervous and endocrine systems. The most recent research will be analysing samples from thousands of patients using very sophisticated technology to establish the exact causes and how best to treat the patients.

What can be done about it?

Because the exact causes are not known there is, as yet, no treatment that will effect an immediate cure. However, prompt diagnosis and good advice from an expert doctor can help you considerably. Most general practitioners – as they will admit – are not experts on this condition. In these circumstances you should ask for a referral to a specialist. The earlier you are seen, diagnosed and advised on treatment the better your chances of avoiding secondary complications.

There are, as yet, no definitive tests for CFS/ME but experienced doctors can make a diagnosis from your medical history alone. They can also perform tests to exclude other disorders – for example blood tests to check for coeliac disease thyroid, liver and kidney function, and a full blood count.

Although there isn’t yet a cure for the illness itself you may need medication for treating the symptoms. Your doctor will decide which particular medicines may be appropriate for you. Many people have found a very low dose of one of the older tricyclic anti-depressants (eg amitriptyline) can help with sleep patterns and pain management. These drugs are prescribed not only for depression; they are effective in other illnesses as well. Some sufferers find they have an intolerance to certain foods, and that their condition improves if these are avoided. Many people have found therapies such as relaxation, mindfulness and self-help classes which include problem solving methods extremely helpful. Doctors can prescribe drugs to help alleviate some of your symptoms, but it is important to realise that what is helpful to one person may not be helpful to another. Every CFS/ME patient is an individual and needs individual advice from an expert doctor.

With early diagnosis and advice it is possible to recover to quite a good state of health, but this state can be maintained only if you pace yourself correctly. That means maintaining a balance between rest and activity. The activity should not be strenuous or a relapse can occur. Some sufferers have been told by non-experts to exercise vigorously, with disastrous results.

A small number of patients are so severely affected that they need a great deal of help from doctors, nurses, physiotherapists and occupational therapists.