CFS - treatments which are not worth trying

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Graded exercise

This is positively harmful when CFS is active. I find it quite extraordinary that so many doctors seem to advocate this as a treatment. It is as if they are unable to distinguish between CFS and lack of fitness! Let's face it, if graded exercise worked then the diagnosis could not possibly be CFS. The only possible explanation I can think of as to why this has stuck in the medical folklore is that after a physician has recommended this to the CFS patient, the latter never bothers to attend again for useless advice. The doctor then believes he has cured the patient because they don't come back. Has anybody else got any better explanation?

Cognitive behaviour therapy

The idea behind this is that the CFS patient does not exercise because he is afraid to because it makes him ill. CBT is all about getting round this fear. The trouble is that the patient is right - he is fearful of exercise because it really does make him ill!. CFSs initially can tolerate so much CBT because they do the exercises at the expense of other activities, not in addition to and this distorts the results of such trials. I have seen a great many CFSs made much worse by CBT!

There is a place for CBT, but only when the underlying physical issues have been identified and only when these physical issues have been, for the most part, resolved. Some patients won't ever 'need' CBT and will happily progress to good fitness levels without this intervention.

The point here is that the brain is constantly monitoring how much petrol there is in the tank. If it perceives little reserve, then that alone is enough to make one feel tired. This is the way that the brain protects the body from over-doing things. This was beautifully illustrated by an account in New Scientist of a Sport's Psychologist marathon runner who was competing in South Africa. He had been told that the marathon was all on the flat and at 18 miles was running comfortably knowing he could complete the run easily. Turning a corner, suddenly he realised the end of the race was at the top of Table Mountain. Within a millisecond of appreciating this fact he felt the most profound and overwhelming fatigue with the result that he was forced to slow right down. His brain had told him "Not enough petrol in the tank"!

My guess is this partly explains why many CFSs are owls - once one nears bedtime the brain does not have to pace so rigidly - it knows it has a get out of jail free card just round the corner i.e. a night's sleep. SO it "allows" the body to do a little extra!

Cold water therapy

This was advocated as a treatment for fatigue by Kakkar. It probably works because it gives the adrenal glands a huge "kick". However, if the adrenal glands are not working properly, as in CFS, then the patient feels awful. I don't recommend cold baths.

Amino acids

I tried these after reading a paper about amino acid deficiencies in CFS. The tests are expensive, the amino acids expensive and the results very disappointing.

Enada

Enada is the activated version of niacinamide or NAD. NAD is an essential part of the mitochondrial package and considerably less expensive. Although the trials look promising I have not been that impressed with the clinical response. It is the old story - single interventions are highly unlikely to result in worthwhile improvements because CFS is a complex problem -it is the combined approach that gets the results.

Cocktails of Low Dose Antidepressants and Treatment of CFS

At the British Society for Allergy, Environmental and Nutritional Medicine meeting in April 1998, Dr David Smith presented his views on the treatment of CFS using cocktails of low dose antidepressants. His theory is that CFS patients have low levels of neurotransmitters across the board, namely acetylcholine, noradrenaline, adrenaline, dopamine, GABA, serotonin and probably others. It is this which causes the multiplicity of symptoms including fatigue. He has concluded from his studies and his experience with patients that the fatigue in CFS is central - that is to say the cause is within the brain. These abnormalities are within the mid-brain, thalamus and hypothalamus and are neurological in origin.

I tried these cocktails for several patients, but they just developed the side effects that I see in most of my patients with any one antidepressant. I was not impressed by this approach and would not particularly recommend this line.

Fludrocortisone

The idea here (Dr David Bell) was that the fatigue in CFS is caused by low circulating blood volume and low blood pressure. He certainly demonstrated that this was the case and is probably due to autonomic disturbance. The question is what can one do about it? In theory by using a mineralocorticoid blood volume could be increased. In practice I found that the fludrocortisone simply caused swollen ankles and the blood pressure was unchanged.

Heparin by injection

Work by Dr David Berg suggests CFS may be caused by being in a state of hypercoaguability - this means CFSs get tiny clots in their capillaries which impair blood supply. This would certainly explain the multiplicity of symptoms in CFS and theoretically could be treated by heparin injections. I've tried these in 4 patients with no success. More recent trials done by Vance Spence do not show a problem with coagulation. Please see here for Vance Spence's study.

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