TYMES TRUST ALERT
15th March 2009

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

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JUDICIAL REVIEW - THE AFTERMATH
This article will appear in the forthcoming issue of The Brief.

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If you were hoping to chat to me after the Judicial Review of the NICE
Guideline on CFS/ME in the Royal Courts of Justice, I apologise. Two
consecutive days of getting up before dawn and standing in rush hour trains
took its toll, as it must have on all who attended. One day was manageable,
but after the second I faded. I sat in a cafe while commuters battled their
way home. It's the day after the day after that gets you, isn't it? Not the
next day, when you are just washed out and convincing yourself that this is
as bad as it gets...

Half-way through the following weekend, I started feeling 'normal', having
slept for nine hours. That word 'normal' is instructive. For two days I was
a normal commuter, jammed in carriages, like the proverbial sardine. I dealt
well with the steps, steps and more steps - London is a warren of them - but
repeatedly lost myself in the court building as I have precious little sense
of direction since the ME. I was steered back on track by the Trust's Chair
of Trustees. Once, I worriedly queried our route: 'I've never been down this
corridor before...' Wrong! And despite how much fitter I have become over
these past few years, my store of energy ran out like the Thames with the
plug pulled.

We now know that NICE has won the case. I feel for Kevin Short and Doug
Fraser, the two committed and courageous patients who mounted this legal
challenge. It was right that the Guideline was challenged and I count it a
privilege to have provided Witness Statements at their request. Until we
have proper recognition of classic ME (see The Brief 2009-1 to be published
shortly) any official body would do well to understand that patients will
not easily lie down and submit to what they sincerely believe to be
misguided treatment recommendations being issued to their doctors.

The case may be over, but the problem remains. To quote the ME Association:
'People with ME/CFS now face a situation where doctors will continue to
recommend two forms of treatments that many people with the illness find
ineffective or even harmful.'

The Judicial Review has highlighted serious differences between patient
charities. Almost all supported the legal challenge. Action for ME and AYME
did not. Their outspoken backing for NICE has gone down like a lead balloon
with the wider ME community. In 2004 I was invited to address the
Cross-Party Group in the Scottish Parliament. In the course of my speech I
showed how patient groups who are too concerned to avoid rocking the boat
with the medical establishment end up compromising themselves. I gave clear
examples of where that had happened. In the aftermath, after a crisis
meeting of the ME Alliance (now superceded by Forward-ME) all Alliance
members, including the Trust, got together to produce a joint report 'ME
Diagnosis: Delay Harms Health.' It now looks as if 2009 will have to be
another year of plain speaking.

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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