counsellingme@yahoo.co.uk>
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permission to repost
What is the PACE Trial for?
The PACE Trial is comparing approaches/therapies that do not to cure
ME/CFS.
I don't question the need for research or clinical trials to develop the
evidence base for treatments or to discover knowledge that can help
patients and medical professionals.
But with the PACE Trial, strip away the psychological theories and
highly contrived interventions; assessment and outcome measures and what
is left for people with ME/CFS?
What is left is a =A32,000,000+ project that will probably tell people
with ME/CFS:
1. Try to retain as much physical fitness as you can
2. Don't overdo things but when able, do a little bit more
3. Try not to think too much about being ill or panic when symptoms seem
bad
4. If your thinking or mood seem to be getting depressed or distorted
seek help
That's it. Really; that-is-it. I don't know about anybody else, but I
knew most of that before I got ill, and any of it I didn't know I could
find out for myself.
I know that sometimes in scientific endeavours it takes a great deal of
very difficult and clever work to discover something that once revealed,
looks quite simple.
That is not what PACE is doing. They have taken something quite
straightforward, complicated it out of all proportion and the result of
all this is almost certain to be nothing more than the sensible approach
described above.
The problem with psychologising is that it leads people to think too
much about things - and it is very easy to overcomplicate matters that
are simple. Then, when you step back and take a wider view there is an
awful 'Duh!' moment when you realise you just spent a lot of time
designing a wheel.
The PACE Trial sets out to change the way patients think about
themselves and their understanding of the disease. The actual
management strategies contain nothing more remarkable than basic,
commonsense approaches to managing long-term illness which most people
already know; and which mostly have little to offer people with properly
defined ME/CFS.
I imagine that when they publish, the medical world will be suitably
astounded to learn that people with long-term fatigue should not do too
little or too much and must watch out for getting obsessive or
pessimistic.
I can almost see that Nobel Prize now...
Peter Kemp
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