TYMES TRUST ALERT
9th February 2009

Jane Colby
Executive Director
The Young ME Sufferers Trust
www.tymestrust.org

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TRUST SUPPORTS JUDICIAL REVIEW OF NICE GUIDELINE

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The Trust is actively supporting this week's Judicial Review of the NICE
GUideline on CFS/ME (CG53) which was published in 2007.

The case against NICE has been brought by Kevin Short and Douglas Fraser,
two patients who have had Myalgic Encephalomyelitis (ME) for many years.

The hearing is in the Royal Courts of Justice, The Strand, London.
Dates: Wednesday 11th and Thursday 12th February 2009.

The Trust published a two-page article on the NICE Guideline in Vision
2007-2 entitled 'The Good The Bad and The Ugly'. You can read it on our
magazine page here www.tymestrust.org/tymesmagazine.htm

This is a balanced article, quoting some statements by NICE that might help
families but also detailing some of the very serious problems with the
Guideline.

Overall, the Trust takes the robust view that this Guideline is 'not fit for
purpose'. It was our fear when the Guideline was published that the bad
would drastically outweigh any good that was in it, and in our experience,
this is precisely what has happened.

As we feared, the impression given by NICE of the success of Cognitive
Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) for ME, coupled
with their recommendation that they be offered to all, has already led to a
blanket application of the graded activity approach by ME clinics in the UK
and abroad. It is routinely applied to children.

Doctors and teachers suspect that when a child does not respond positively
to this type of management, there may be sinister reasons, such as child
abuse, neglect, or Munchausen's Syndrome by Proxy (now referred to as FII).

Thus Child Protection investigations appear to have increased and families
are under even more pressure than before via graded activity programmes to
get their children back into school, no matter what this does to their
educational results, or whether it is 'suitable' education under the law for
that particular child.

The Trust's presentation to the All Party Parliamentary Group on ME
concerning Child Protection Issues is here: www.tymestrust.org/pdfs/childprotectionissues.pdf

We have provided Witness Statements to support this Judicial Review. The
vast majority of ME organisations are also in support of the Claimants.

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Jane Colby is Executive Director of The Young ME Sufferers Trust.
She was a Headteacher for nine years, a member of the government
Chief Medical Officer's Working Group on CFS/ME and co-authored
ME/CFS In UK Schools, the largest epidemiological study of ME to
date. She is a member of the National Association of Educational
Inspectors, Advisers and Consultants (now ASPECT), a life member
of the National Association of Head Teachers and a Fellow of the
Royal Society of Arts.

Copyright (c) 2009 The Young ME Sufferers Trust