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It is important to realise that CFS is not a single condition and in fact the only thing uniting the various "CFSs" is the name and some of the symptoms. Despite great efforts by the medical profession to accurately define CFS — by implication as a disease — the fact remains that it is a syndrome and the name describes nothing more than a collection of symptoms. As a result the term "CFS" ends up covering just about all serious systemic chronic diseases that doctors don't yet know about or understand. It is ironical that despite the word syndrome having a very specific meaning in medicine (which is quite different from the meaning of the word disease), doctors and researchers for the most part continue to try to deal with CFS as though it is a single disease. As I discuss in my page on politics of CFS, this has some unfortunate consequences when it comes to interpreting research results.
Another reason why Chronic FATIGUE syndrome is a bad name is that tiredness is often not the defining feature for many sufferers. Of course it is not surprising that anyone with a long term debilitating disease (who is often trying to cope with having a life at the same time) will feel more tired than average. At the other extreme some patients do suffer from truly profound fatigue, however this hardly makes fatigue a useful disease identifier. It is exactly like describing someone who has a sore knee, as having CKP or "Chronic Knee Pain". True, but not useful. This CKP patient may actually have a torn cartilage or ligament, or arthritis, or a sprain or any number of conditions. Just as the treatment for each of these knee conditions is different, so the treatment for the several conditions described as CFS will be quite different.
Given the current confusion within the medical profession about every aspect of CFS it is not surprising that getting early diagnosis and good treatment is a difficult task. Most sufferers have experienced the hell of disbelief and doctor-searching that is commonly experienced by patients who know that they are ill but have no idea why, or what with, or what to do about it.
In these pages, I put my jaundiced but experience-based view on the medical politics of CFS in Australia.
There is also some information on two treatments that have been useful for me but which are not often discussed or well known, and which should be in every doctor's CFS armoury - transfer factor and naltrexone. If you are a sufferer or a medical professional and you don't know about transfer factor you should read this page and follow the associated links. It won't help everyone but it will help a majority of those with obvious or occult immune problems and/or infections.
To forestall the immediate objections of any cynical medicos reading this ... while there is equivocal research about the usefulness of things like transfer factor as a treatment in CFS, it needs to be remembered that the results of such research are tainted by the above-mentioned difficulty in CFS definition. Once you accept that CFS is a multiplicity of conditions, it becomes obvious that the way to treat is first to try and identify the sub-group to which the patient belongs and then search for appropriate treatment. When treatments are trialled on groups without any attempt to differentiate between different conditions which all meet the CDC criteria, it is unsurprising that most often the statistical outcomes of trials of treatments like transfer factor are unspectacular.
I am certain that TF is a very useful treatment for some aspects of CFS — for me and for many others.
I have also posted an excellent research paper which should be read by anyone who wants to get a quick feel for what may be involved from the point of view of immune dysfunction and the consequential or causative infections which plague sufferers.
Finally, there is a page giving links for further information.
I will add more to these pages as time permits.
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