Britain's Medical Research Council (Dept. of Health), ran a trial, PACE, reported on in The Lancet, UK medical journal in 2011) to evaluate - read, promote a psychological approach to treating ME (CFS in the USA).
The prime aim seemed to be steadily increasing exercise and telling the patient that it is all in his head. The 4 therapies used were: adaptive pacing therapy (APT), cognitive behavior (CBT), graded exercise therapy (GET), and specialized medical care (SMC). NB: APT does not mean that the patient decides how much to exercise, but standard amounts and times for exercise plus no naps.
Despite very limited improvement across all categories apart from APT, ie., between 3.4% decrease in fatigue, and 9.4% improvement in mean physical function compared not to a control group who received no treatment, but to the SMC group, and "severe adverse reactions" varying
between 1% to 3%, the government's decision was that the PACE trial was a success and was the way to go for CFS/ME patients.
Needless to say, the largest children's ME charity in Britain,The Young ME Sufferers Trust, disagrees, saying that a separate trial reported on in the Clinical Rheumatology journal in 2011, found that GET and CBT resulted in "worse physical function and bodily pain scores"; and
that "children's symptoms are exacerbated with GET".
The writer of the book, Osler's Web (the history of ME) commented that this was a way to avoid disability and medical payments as is seems to push the idea that CFS/ME is psychological in nature and that people can improve with more exercise than they would ordinarily consider.
And this despite, the year before, a group of 86 Member's of Parliament signing a petition to bring the issue of ME before Parliament, stating that ME is a genuine medical condition, that govt. funding "must be focused on the bio-medical factors involved and not simply managing the psychological symptoms". Now this concerted effort must have come about through ME patients and their families contacting their MP's and complaing about the way they were being treated - or not treated, sometimes (it is difficult to get diagnosed with ME).
So if anyone would like to make a comment on how they or their loved one was or is being treated by the medical community, please leave a comment.
Saturday, April 14, 2012
Thursday, April 12, 2012
Just got 2 new friends
After almost 6 mnths, I am back writing my blog. Will not leave it so long now as am officially retired. Now can concentrate on this blog and finishing my book on this disease. And have a grand total of 2 people who have paid attention to me!
My latest comment is about the UK's new focus on CFS (ME in Britain) which seems to consist of making patients exercise more - CEB's? - essentially telling them it's all in their head. 1 or 2 patients forced to exercise beyond their capability developed further severe problems: a teenager had heart damage and another ended up in a wheelchair.
Now while exercise is fundamentally important - I try to walk each day or at least every other day (and go swimming sometimes) for at least 20 minutes, then it's on my terms and I do not push myself beyond what I am capable of. To do otherwise is tantamount to torure.
My latest comment is about the UK's new focus on CFS (ME in Britain) which seems to consist of making patients exercise more - CEB's? - essentially telling them it's all in their head. 1 or 2 patients forced to exercise beyond their capability developed further severe problems: a teenager had heart damage and another ended up in a wheelchair.
Now while exercise is fundamentally important - I try to walk each day or at least every other day (and go swimming sometimes) for at least 20 minutes, then it's on my terms and I do not push myself beyond what I am capable of. To do otherwise is tantamount to torure.
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