The Young ME Sufferers Trust
www.tymestrust.org
December 2004

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In Vision : the Trust’s position on ME Clinics

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The Government wants the ‘Expert Patient’ philosophy to affect all areas
of the NHS. We believe that patient autonomy is needed in ME/CFS
services. With no cure available, patients should be supported in caring
for themselves in their own way, with support from their GP and/or
consultant.

As part of our investigation into your own views, Amy Bakewell wrote: ‘I
would like recognition from the entire medical profession and some
national ME charities that Graded Exercise Therapy (GET) and/or Cognitive
Behaviour Therapy (CBT) for some people is not going to be the slightest
bit helpful.

‘I’ve tried the approach twice (it’s the only thing I’ve been offered)
for 6 months the first time and for 5 months the second. It was a
resounding failure both times. In fact it was detrimental – months of
increased pain and exhaustion and then you crash. Yet in terms of
official reports I don’t see any evidence of my experiences being
acknowledged at all. It’s infuriating and I could go on and on about it.
For example, some charities seem to like saying how these treatments can
be helpful. Their present acceptance of the official line is very
misleading.’

Patients should not be pressurised. As different forms of ‘chronic
fatigue’ can now become trapped under the same CFS umbrella, your own
judgement should be respected over what is best for you.

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Copyright (c) 2004 The Young ME Sufferers Trust