Why Chronic Fatigue Syndrome, fibromylagia, cancer & more.

This blog is about the on-going challenge I'm having to finish the book about CFS (myalgic encephalomyelitis/UK) and several secondary diseases which can present as a result, i.e., fibromyalgia, depression, IBD, cancer (especially colon cancer), schizophrenia and Parkinson's, etc.
If you have followed the recent news that an American lab determined that the retrovirus, XMRV, was found in over 90% of people with CFS, although British and German labs have not been able to find this virus in CFS patients' blood, then you might assume that a cure is in sight. Vaccination is being talked about; the use of AZT (the same drug as HIV/AIDS patients take) is also being talked about, even though AZT can make a person who does not have AIDS very sick indeed. I tried to post my scepticism about the XMRV virus several times on the recent New York Times blog about the virus and CFS: I just mentioned that it is a well-known fact amongst CFS researchers that people with CFS are extremely prone to having antibodies to whatever virus is prevalent without actually ever coming down with a viral disease, and my comments got posted only once and were then quickly removed within a few days. So I doubt my that stating the non-viral cause is going to go down well either.

Saturday, March 12, 2011

Lancet trial

The British medical journal, The Lancet, recently published the results of a trial (PACE) looking at various therapies based on psychological and exercise bases. (18 February 2011). While I only have access to an abbreviated summary (the journal does not put the full articles online and the actual journal takes a while to be sent over the Atlantic), I still feel the need to comment upon their findings.
The article was published by a professor of psychological medicine at St. Barts in London (UK), and states that cognitive behavior therapy (CBT), graded exercise (GET), which includes pushing people beyond what they feel they can do, trumps adaptive pacing therapy (APT) - which is favored by British CFS patient groups and who feel that the UK Medical Research Council is strongly insinuating that CFS/M.E. is simply all in the mind and if only these people would get off their backsides then all will be well.
A month or so ago, I connected to an online newspaper, the Scottish Daily Record, because of several articles about CFS/M.E. One mother wrote about her young teenage son (fostered out for one reason or another) who developed this disease and who was forced to exercise beyond his capacity and who, therefore, developed heart damage as a result and who is now in a wheelchair.
It makes me wonder if her poor son's result was listed in the "serious adverse reactions" or if such results were simply shelved and ignored. Such people seem to be too zealous and fascistic (Germany, both pre-WWII and during WWII) comes to mind!
It reminds me of going to the dentist after The American Heart Association "recommended" that any work done on patient's teeth should be accompanied by an antibiotic. The dental assistant said that I "had to have" an antibiotic tablet which I duly swallowed only to turn up at the required time to find out that the dental office had made a mistake and had not recorded my appointment so that I was now required to take another antibiotic tablet for another appointment. I said no because the antibiotic had violently upset my intestines, destroying a lot of "good" bacteria, encouraging the "bad" bacteria, giving me gas and further damaging my intestines. I'd already tried explaining to the assistant (who was far less educated than me) that taking antibiotics was not good for me. I was intrigued and phoned up the American Heart Association to find out their actual stance and was told that antibiotics were recommended but not required, but that's the danger of small minds and less educated people: they become uncaring, dogmatic and zealous, not allowing of differences and not allowing patient's imputs - I didn't go to another dentist for several years after that so what good does such strict interpretations do?
CFS/M.E. patients' groups are right in being upset; their other complaint is that their is no research being done into the actual physical cause - the idea of a mouse virus (XMRV) has been discounted. Fair enough, for I agree with that too, but there is a phsyical cause!

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Any reasonable comments - even if diametrically opposed to mine - are welcome