This section provides only an overview of ME/CFS and is intended as a starting point to people who are unfamiliar with the condition and its history.

  • Myalgic Encephalomyelitis (ME)
  • Chronic Fatigue Syndrome (CFS)
  • Post-Viral Fatigue Syndrome (PVFS)

Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)
are all names for a condition of uncertain cause(s) affecting many thousands of people. All types of people at all ages are affected. Severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and concentration are commonplace. In many cases, onset is linked to a viral infection. Other triggers may include an operation or an accident, although some people experience a slow, insidious onset.

Effects

In some the effects may be minimal but in a large number, lives are changed drastically: in the young, schooling and higher education can be severely disrupted; in the working population, employment becomes impossible for many. For all, social life and family life become restricted and in some cases severely strained. People may be housebound or confined to bed for months or years.

Prognosis

Recovery is variable and unpredictable: some people may recover completely, although it may take a number of months or years; in the majority, recovery is only partial and typically follows a slow course of variable improvement and relapse; in a small but significant minority, the symptoms become more severe as time proceeds.

Treatment

There is currently no accepted cure and no universally effective treatment. Those treatments which have helped reduce particular symptoms in some people have unfortunately proved ineffective or even counterproductive in others. An early diagnosis together with adequate rest during the acute phase and during any relapse appear to bring the most significant improvement.

Controversy

ME/CFS has attracted more than its fair share of controversy. Initially, and for many years, there was a debate as to whether it was actually an illness at all. Although the situation is still not perfect, many influential bodies, (The World Health Organisation, the Department of Social Security, the Department of Health, the Royal Colleges of Physicians, Psychiatrists and General Practitioners amongst them) are now in agreement that it is real. Two major questions now occupy the minds of the people involved:

  • What is it? and
  • What’s to be done about it?

Currently there are several views of precisely what causes ME/CFS, and these have been loosely split into two schools of thought: one which favours ‘psychiatric’ causes and the other which argues ‘physical’ causes, although there is also an argument which proposes that no such distinction should be made. What also seems possible is that the illness currently defined as ‘Chronic Fatigue Syndrome’ is actually a number of different conditions, all characterised by similar symptoms. (A ‘syndrome’ characterises an illness by its symptoms, not by the underlying disease process.)
The second point , ‘What’s to be done about it?’ attracts equally heated debate. Until more information on what we’re having to deal with is forthcoming, there will remain a wide range of views on how people can be helped. Research into causes, treatment methods and cures continues, perhaps a little more in earnest now that it has become a ‘respectable’ condition to investigate. Treatment is often aimed at reducing symptoms and so can encompass a range of ‘mainstream’ and ‘complementary’ methods, ranging through drugs, homoeopathy, behavioural therapies, acupuncture, diet changes and beyond.

The Role of the ME Association
As research into the cause(s), effective treatments and cures continues, The ME Association offers help and support for all people in the UK who are affected by ME/CFS, while also taking very active parts in the medical, welfare and advocacy arenas.

Information Courtesy of ME Association:
4 Corringham Road
Stanford-le-Hope
Essex
SS17 0AH
Tel: 01375642466 (10.00am-12.3Opm, 1.30-4.00pm)
Fax: 01375 360256
Information Line: 01375 361013 1.30-4.00pm Monday to Friday
Listening Ear Service: Ring 01375 361013 after 4.00pm and at weekends for details of Listeners on duty.
For Further information visit the website
www.meassociation.org.uk

Activity and Rest

Striking the correct balance between rest and activity – both physical and mental, is one of the most difficult aspects of coming to terms with ME/CFS. On one side of this equation is the need to take an appropriate amount of rest and relaxation, especially during the acute early stages and any subsequent relapse. However, this has to be balanced by the need to try and increase activity within individual limitations. It is not easy achieving the correct mix of rest and activity, particularly when you start to realise that although inactivity brings considerable relief from many ME/CFS symptoms, it can also lead to frustration and anger at not being able to carry on with a normal way of life. Equally, just taking relatively small amounts of physical exercise can cause an exacerbation of symptoms, and this is very obvious when too much activity on a ‘good day’ leads to post-exertional malaise (to use medical jargon) the following morning. Finding the correct balance – which is ‘rather like making mayonnaise’ to quote one consultant-really comes down to using up your daily energy quotient in a planned and sensible manner.

The two most important variables which must be taken into account when planning an
individual rest-activity programme are(a) what stage you have reached in the illness and (b) how severely affected you are.

Stage 1 – Acute ‘Toxic’ Phase

For anyone who fits the classic pattern of being perfectly well, then falls ill with an infection, and from that point onwards ‘fails to recover’ with all the characteristic symptoms of ME/CFS, there is a strong case for having a period of bed rest. This will need to be combined with slowly increasing the amount of time spent out of bed sitting in a chair or gradually mobilising yourself about the house. Complete and prolonged bedrest should be avoided wherever possible, but it may be required for the more severely affected.


Stage 2 – Partial Recovery

Whilst accepting that a small but significant minority will make no recovery whatsoever after their initial triggering infection, for those who do, a progressive step-by-step approach is advised. The aim is to steadily increase both physical and mental activities – something which used to be known as convalescent, but is no longer fashionable as a medical treatment. Depending on your rate of progress during the following weeks and months, this might involve short periods of bed rest in the morning and afternoon, but try to ensure that any daytime sleeping is not then interfering with your ability to have at least 5 or 6 hours of good solid sleep that night. Any return to school or work will need to be carried out in a -flexible and, if at all possible, part-time manner. If such attempts are clearly not being successful, then do not force yourself on till you are heading back to square one again before going off sick. Keeping a simple diary to monitor and regulate progress can be very helpful at this stage.


Stage 3a – Variable Pattern of Disability

Unfortunately, this is the most common outcome after stage 2 – a return to a significantly reduced level of normal functioning, which fluctuates, on a day-to-day and week-to-week basis. On ‘good days’ you may function at up to 60% or 70% of normal self on ‘bad days’ this may fall to 20% to 30%. No matter how hard you try, it is just not possible to break through the baffler – or ‘glass ceiling’ -, which forms your upper limit. Anyone in this category needs to establish a baseline of activity at which they feel perfectly comfortable. For some, this may actually mean a quite significant reduction in the amount of activity being undertaken. From then on levels of activity should be gradually and progressively increased, but do not try to push yourself too far too soon or a relapse will probably follow. Goals will need to be realistic and achievable, and you will have to accept that progress may turn out to be two steps up followed by one step down.


Stage 3b – Chronic and Severely Affected

For those who fail to make any real progress, a different set of guidelines apply. Any increase in physical or mental activity will have to be very tiny to begin with and help from a sympathetic occupational therapist or physiotherapist may be worth considering. In some cases a more structured programme involving short amounts of activity, coupled with adequate rest periods, may be worth trying. As already stated total and prolonged bed rest should be avoided whenever possible as this will inevitably lead to what is termed deconditioning – a state of generally decreased body fitness, which may also involve a loss of body calcium (predisposing you to osteoporosis) and wasting or contractures in the muscles.


Coping with a Relapse

At the first sign of a relapse or exacerbation of symptoms – possibly due to an infection or too much activity – cut right down on your amount of activity. If your symptoms are predominantly ‘toxic’ in nature (e.g. raised temperature, sore throat, enlarged glands), a short period of bed rest is probably wise. This should then be followed by a gradual return to previous activity levels. However, it may take several weeks or months before you return to previous levels of functioning.

What Sort of Physical Activities Are Advisable?

Gentle walking or swimming in a warm pool (check with your local baths to see if the water is heated up on certain days of the week; you could even qualify for admittance to the hydrotherapy pool at your local hospital) are two forms of exercise which are worth carrying out on a regular basis. The buoyancy provided by warm water can be very helpful for easing pains in the joints and muscles. You could also consider adding some form of indoor activity such as the gentle movement of Tai Chi and some types of yoga. Some people find breathing exercises useful; they are also good for relaxation. Head Office can supply details of a self-help tape for beginners.


What Sort of Activity is Harmful?

Any type of sudden or intense physical activity will almost certainly lead to exacerbation of symptoms or full-scale relapse. So-called graded exercise regimes, which involve a progressive increase in activity, regardless of how the patient feels on a day-to-day basis, are NOT beneficial in this condition.


What is Pacing?

This is a term used in the National Task Force Report to describe the sort of general advice already given above. You may find that pension and benefit providers will ask for evidence from your GP that this has formed part of your management plan.


Further In formation
• National Task Force Report on ME/CFS/PVFS, Sept. 1994 (pages 63/69 on Pacing). Available from:

Westcare, 155 Whiteladies Road, Clifton, Bristol 8S8 2RD
Tel: 0117 923 9341
Price: £6.95 (post and packing included).
• Living with ME (pages 141 – 147)
Dr Charles Shepherd, Cedar, 1992.
Jan.1997

Dr C Shepherd

Information Courtesy of ME Association
4 Corringham Road
Stanford-le-Hope, Essex
SS17 0AH

Tel: 01375642466 (lOam-12.3Opm, 1.30-4pm) Fax: 01375 360256
Email: enquires@meassociation.org.uk

Information Line: 01375 361013 1.30- 4pm Monday to Friday

Listening Ear Service: Ring 01375 361013 after 4 p.m. and at weekends for details of Listeners on duty.

For Further information visit their website
MEA website www.meassociation.org.uk

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