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Chronic fatigue syndrome (Myalgic encephalomyelitis)
Written by Dan Rutherford, GP
Impact of CFS/ME
If you are reading this as someone who has or had CFS/ME you will need no expansion on the subject of how dramatic and devastating its impact can be.
Although it is part of the diagnostic criteria for CFS/ME that it should significantly impair performance intellectually and socially, these few words hardly do justice to just how much CFS/ME can change someone's life.
The level of impairment caused by CFS/ME can vary from fairly modest, in which an affected person can retain the ability to carry out most normal duties including work, provided this is paced and sufficient rest is allowed for through to the most severely affected people who can be bed bound and need total nursing care. CFS/ME can last for months to many years.
Treatments for CFS/ME
A detailed technical report on CFS/ME treatments was published by the National Health Service Centre for Reviews and Dissemination at the University of York in September 2002.
Treatments can be grouped under several general headings:
cognitive behaviour therapy (CBT)
antiviral
If CBT is taken to imply that CFS/ME is 'just psychological' or 'all in the mind' then of course it would deserve to be treated with contempt. If one drops that idea but instead accepts the more helpful view that human behaviour is extremely diverse then it makes sense that when ill it is possible to get into a frame of mind that can amplify or create problems. Behaviour therapists do not say that they can explain why CFS/ME starts in the first place, only that they have a system of tackling its effects.
The main difficulty with CBT is that it generally requires to be carried out in conjunction with a therapist. 10 to 20 one-hour sessions would be the norm, with 'homework' to be done between sessions. This of course is a major stumbling block, because the number of suitably trained therapists (usually psychologists) working within the NHS is small and waiting times of over a year are not uncommon.
Provided it is approached in a positive way CBT will not make anyone worse, but it won't always help either. It can't be reliably predicted who will and won't benefit.
Graded exercise
Similarly it is too simple to say that someone with CFS/ME who has become very sedentary and therefore has become unfit, needs to get fitter to get better.
Re-training the body to cope with more effort is a two edged sword and needs to be approached with care and common sense.
Graded exercise is therefore not the same as the 'pull up your socks and get on with it' type of advice that is insulting to patients and doesn't work anyway.
Furthermore graded exercise has to be sensitive to the individual's particular circumstances – it is generally not helpful to give the same programme of steadily increasing activity to everyone.
Two or three of the reasonably large trials done in graded exercise showed benefit. The ways in which the trials were conducted were based on set increases in exercise over several weeks rather than a totally flexible system of pacing and some of the studies had quite high drop-out rates. On balance graded exercise is a valid form of treatment for some people.
Pacing
Rest periods are important and with the passage of time one should see improvement.
Pacing makes a lot of common sense yet seems to have drawn criticism from some experts, who feel it can reinforce patterns of ill health or discourage rehabilitation. Surely this need not be so. Very few people with CFS/ME can be keen to keep feeling unwell and the vast majority are looking for treatment or at least support on the way out of the illness.
If pacing is taken to mean permanent advice never to exceed a certain level of activity defined at the start of the illness then the criticism is justified – the concept of eventual improvement is essential to motivate and encourage someone, especially during the bad spells. But bad spells do occur and a sensible approach to rest, recuperation and moving on again positively makes good sense.
Immune system
As immunoglobulin is prepared from donated blood there is a small risk of transmission of infection from it.
Ampligen is an expensive drug still under evaluation in CFS/ME but in the one published trial so far it showed benefit and was well tolerated. It is not available in the UK and there is insufficient information to recommend it.
Drug therapies
Interferon is a protein produced naturally by the body during viral infections which has antiviral and immune system actions. It can now be manufactured artificially and has several uses in medicine such as in the treatment of hepatitis B and C virus infections. Two studies of interferon in CFS/ME reported some improvement, but not in all those treated.
The antiviral drug aciclovir is not effective in CFS/ME.
Antidepressants
The overlap is probably small as only a small proportion of people with CFS/ME benefit from antidepressants unless they also have other symptoms of a depressive illness.
As with depressive illness any benefit could take several weeks to materialise but if there is no effect at about six weeks then there is little point in persevering.
Sleep promotion
Although a great deal of information is now known about the changes within the body and the brain that occur during sleep we have only a patchy idea of why sleep is so important.
A simple explanation is that during sleep the electrical and chemical functions of the brain and nervous system are reset and recalibrated ready for the next wave of wakefulness and the levels of messenger chemicals within the system are replenished.
A technological analogy is of a sophisticated computer system updating its data and clearing the clutter out of its memory to allow space for the barrage of information we take in constantly when awake.
There is more to getting a good night's sleep than not being awake for a few hours which is probably why medicines to make people sleep (hypnotics) can have disappointing results. The sleep thus gained is not necessarily refreshing – a point often remarked upon by people with CFS/ME.
There is also the grogginess factor of still having some drug in the system in the morning. Most of all there are the problems of long term dependence on hypnotics. However, if someone has a particularly difficult time getting to sleep without medication then taking a regular hypnotic is probably the lesser of two evils.
Steroids and other hormones
The steroids produced here have very important roles in controlling salt and water balance, blood pressure and general metabolism. Failure of steroid production by the adrenal glands gives rise to a rare condition in which fatigue is prominent.
The adrenal glands are controlled by other hormones arising in the pituitary gland of the brain, and some evidence exists that points to abnormalities in pituitary gland function as being a cause of CFS/ME. Significant steroid deficiencies have not been found however, nor have trials of steroid drugs been shown to be significantly beneficial.
Sex hormones are also steroids, produced by the ovaries or testes. Again no evidence exists to tie changes in sex steroid levels to CFS/ME.
Some women with CFS/ME may experience a change in the level of symptoms during the course of their menstrual cycle or during pregnancy. Changing sex hormone levels, for example with hormone replacement therapy, does not help.
Dietary and vitamin supplements
Evening primrose oil has produced conflicting results, with one study reporting benefit after three months of taking 4g daily and another, using the same dose, showing no benefit.
Vitamin B12 is essential for the manufacture of red blood cells and the maintenance of the 'insulating' material that covers nerve tissue (myelin). It is absorbed from foods of animal origin in the presence of a substance called intrinsic factor normally made by cells in the stomach lining.
Intrinsic factor binds to vitamin B12 first in the stomach and the combination is then absorbed downstream in the small bowel. Vitamin B12 is stored in the liver and at any one time we have about three years' supply there. Detectable vitamin B12 deficiency is uncommon and is usually hinted at by ordinary blood tests and easily confirmed by measuring the amount of the vitamin in the blood.
In contrast to the infrequency with which B12 deficiency is proven, vitamin B12 has long been used as a 'treatment' for fatigue and as an energy booster, both in human and in veterinary medicine. It undoubtedly has a strong placebo effect (the response one gets from an inactive treatment if the person receiving it believes strongly enough that it works).
Although vitamin B12 is an active substance, once the body's stores are topped up any excess is simply excreted in the urine so there is no logic to using it outside of deficiency states. Vitamin B12 has been used in CFS/ME but not in trials sufficiently well designed to separate the real from the placebo effects. Anecdotal evidence suggests it can be helpful in about a third of patients.
NADH (nicotinamide adenine dinucleotide) is a substance which facilitates the energy-releasing reactions that occur within cells. In a small trial of 33 patients with CFS/ME who took an oral supplement of NADH, a small number had a modest improvement. A larger trial of this treatment is planned.
Carnitine and Co-enzyme Q10 (ubiquinone) are both 'energy-providing substances' that can be obtained from health food stores. There are no good trials of their use in CFS/ME but there is anecdotal support for their use in general fatigue.
Complementary medicine
There are plenty of contrasting, even opposite, views around within the public and especially the professional arenas. There are the devotees of evidence-based medicine who can't find the studies that show these therapies work better than placebo.
There are also the many millions of satisfied users of complementary treatments who rightly have a better opinion of themselves than as simply gullible consumers or the victims of faddism.
In contrast to the vast resources of the conventional pharmaceutical industry which spends billions of pounds annually on drug research the amount of funding that goes into complementary research is tiny. There is little or no money to be made, in drug industry terms, in finding out if a particular type of herb is useful in treating CFS/ME because the treatment could not be patented or commercialised.
Certainly there is a large body of medical literature on complementary treatments but it will never be comparable, either in quality or quantity, to 'conventional' treatments. For some doctors, and patients, that means that complementary medicine is a no-go area. For others willing to live with the fact that life isn't perfect then there is much to be gained from them.
Arguments over which treatment is better than any other are unhelpful because different conditions lend themselves to being treated in different ways. How to choose a suitable complementary therapy is outside the remit of this article.
Homeopathy has the advantage of being available within the NHS, albeit to a limited degree. In a few areas NHS clinics in acupuncture and hypnotism are also available. Some complementary treatments are however of dubious value even on the most generous of analysis and many are very expensive, so at least make sure that you seek an accredited practitioner in the treatment.
Some confusion exists about what exactly is meant by this. It is clear that many people with CFS/ME who try to keep going at their old, pre-illness pace, or who push themselves hard in an effort to force recovery can cause themselves more harm than good in the short term as they are likely to activate more symptoms.
Pacing means living within a given envelope of activity defined on the basis of how much someone can do comfortably. By managing their energies conservatively they can therefore extend their periods of activity.
As subtle abnormalities of the immune system have been proposed as possible causes of CFS/ME several types of treatment have been tried that one way or another have immune system effects. The results have been disappointing, although not entirely negative. Injection of antibody protein (immunoglobulin G, IgG) was tested in several trials, some of which showed partial benefit, others showed none and all had significant side effects from the treatment.
There are several reasons why it can be worthwhile to use an antidepressant in CFS/ME. Several symptoms of depression, such as fatigue and sleep disturbance are also found in CFS/ME and it is theoretically likely that there are some similarities in the brain chemistry changes underlying both conditions.
Sleep deprivation is an effective form of torture and conditions or circumstances associated with disruption to sleep are invariably associated with fatigue.
There are many naturally occurring hormones in the body that collectively come under the heading of 'steroids'. Usually the term refers to those hormones produced by the adrenal glands – two walnut-sized pieces of highly specialised tissue that are situated at the top of each kidney.
In one trial comparing injections of magnesium with placebo (dummy treatment) over six weeks the treatment group had a significantly better outcome. In another study levels of magnesium within the red cells of the blood were low in CFS/ME, but other studies have not confirmed this.
To touch upon the use of complementary treatments, irrespective of the condition for which they are used, is to open up one of the widest fields of debate in medicine.
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