Chronic Fatigue Syndrome (CFS)

This is a personal view of CFS/ME/CFIDS based on information gathered over the past few years. In the absence of a medical consensus, everyone has to make up his or her own mind as to the nature and treatment of CFS/ME. I have tried not to include anything that conflicts with personal experience or published accounts of the illness. I am not a medical doctor but I am scientifically qualified and I have spent a lot of time researching CFS. I hope I have approached it from a scientific and open-minded viewpoint. I do not claim that I have all the answers but I hope that it points in the right direction.

Denis Scadeng

Chronic Fatigue Syndrome (CFS), otherwise known as CFIDS, ME, etc., is a serious neurological illness from which, however, recovery can occur.

Cause of CFS

CFS is triggered by one or more precipitating (causal) factors, the most likely being:

• mental or emotional stress;
• infection by a virus while under stress. The virus is non-specific but EBV and enteroviruses (e.g. Coxsackie B) are often mentioned. It has to be said, however, that in spite of a lot of good research, nobody has shown a causal link between a virus and CFS and no virus persists throughout the illness.

Other factors may influence the onset of the illness but alone do not cuase CFS. These include:

• exposure to environmental pollutants such as organophosphates;
• genetic predisposition;

After a period of time, secondary problems, e.g. dietary intolerance, allergies, gut troubles, skin reactions, etc., may develop, and may even persist after recovery. Ideally, the illness should be diagnosed and treated before the development of secondary factors. If these are secondary, then medication to treat them can have no effect on the main illness and, in fact, overmedication may retard recovery.

Nature of CFS

The exact mechanism of CFS is uncertain but may involve some of these:

• An imbalance of neurotransmitters and/or receptors in the brain.
• Damage to the blood brain barrier allowing large proteins to enter the brain.
• An up-regulated immune system (fighting an infection no longer there).
• The hypothalamus - pituitary - adrenal axis.
• Other elements of the immune system.

Perpetuation of CFS

However, whatever is physiologically wrong, the illness must be maintained by feedback from one or more perpetuating factors.

Perpetuating factors may include:

• Mental or emotional stress. Just having the illness is stressful. Trying to keep up with education or a job is stressful. Fear of the future is stressful. Attitudes of "well meaning" friends or relatives are stressful. Being subjected to continuous medical tests and new treatments is stressful. Having a pre-existent or co-existent medical condition is stressful;
• The illness itself. The anxiety and fear engendered by the illness perpetuates it. A belief that recovery is possible and will happen is a great de-stressor;
• A frantic search for "cures" by trying every quack remedy in the canon of alternative therapies and finding that they do not work.
• Attribution - a belief that it is caused solely by a persistent virus. This encourages a search for a non-existant "magic bullet" and gets in the way of management measure that could lead to a recovery.

While all these perpetuating factors cannot be eliminated completely, recovery requires that they should be reduced as much as possible.

Treatment of CFS

It is possible that CFS is (or can be) self-limiting and recovery is achieved by the normal regulatory processes. This, however, can only happen if the perpetuating factors are reduced or eliminated.

Recovery occurs by management of the illness using medications combined with physical and mental activity. The management has two primary aims:

• to prevent further deterioration and the development of secondary symptoms;
• to allow the body to return to normal function.

There is, as yet, no "magic bullet" to cure CFS. There is no conventional drug, vitamin, dietary supplement, ancient oriental exercise, traditional Chinese medicine or magic that "cures" the condition, i.e. directly corrects whatever is wrong. This may seem a very dramatic statement but the same can be said of the common cold and most viral infections.

This, however, does not mean that there is not a vital role for medication in the management of CFS but it is important to realise what it is doing.

The role of drugs/treatment is not to "cure" CFS but to control the perpetuating factors so that recovery can occur. There is an important distinction here.

To use an analogy - if you cut your finger, you stick a plaster on it. The plaster does not heal the wound but it prevents infection and so allows tissue regeneration to occur.

A closer model - if you get flu, you rest, relax, take mild medication, drink coffee or have a beer. None of these affect the flu virus but they do allow the immune system to do its job. If you carry on with normal activities, you feel worse and it takes longer to recover.

If all this is true, it might explain the inconclusive results obtained in trials of different treatments, all of which are based on the concept of a "magic bullet" or single factor cure. It would also explain the lack of success of various specialists.

Remember, specialists only deal with a single factor.

• Psychiatrists look at psychological problems, which are only present in a few cases - though whether cause, effect or correlation is uncertain.
• Microbiologists look for micro-organisms and, when they can't find them, claim that there must be an unknown stealth bug.
• Endocrinologists check hormone levels and then claim that low levels cannot be detected by tests.
• Dieticians offer expensive supplements of dubious value.
• Doctors who have recently written a book specify numerous (expensive) tests, without saying what they would do about positive results.
• Alternative therapists offer to stroke your foot (reflexology), stick needles in you (acupuncture), give you a potion so dilute it contains nothing (homeopathy), wave "positive energy" into you (Reiki), etc.

So, what can be done?

The only treatment that I know of that works is to:

• keep the treatment simple - over-medication can be stressful. Too many powerful drugs can overload the immune system and a succession of failed therapies can disillusion the patient;
• take a mixture of tricyclic antidepressents in very low doses as a sedative at night to induce restful sleep;
• take Prozac in very low dose in the morning as a stimulant;
• do physical activities up to but not beyond capability (i.e. without payback) to prevent deconditioning of the muscles;
• do mental activities to stimulate different parts of the brain and avoid boredom;
• avoid stress;
• keep optimistic;
• realise that the aim of the treatment is to allow the normal regularity mechanisms to work and deal with the illness.

It is interesting that this approach is being use at a number of centres across the globe. I find it encouraging that there has been a kind of convergent evolution and something that works is now emerging.

This relatively simple and realistic treatment has been based on the techniques used by Dr David Smith of Essex, UK who has an excellent record of sucess in this area. However, they are my own views and have not been seen or endorsed by him. Hit the link to see further details.

.

Updated 24 Oct. 2003

Return to homepage