TYMES TRUST ALERT
12th May 2009

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

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ME AWARENESS DAY 2009 : ME CENSUS / WITNESS STATEMENT

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ME CENSUS

This ME Awareness Day, the Young ME Sufferers Trust is launching a call
for an ME Census. We still do not know for sure how many cases of ME
there are in the UK. Many people don't realise that the estimate most
often used in the press is based on my own, from the 1990s. It's time to
get a new figure, to find out what the scale of the illness is now.

We are calling on GPs' surgeries to use their software facilities to
obtain statistics on how many cases of CFS/ME/PVFS are on their books. We
are just at the start of this project and you will hear more about it
during the coming weeks and months.

We are backed by Consultant Neurologist Abhijit Chaudhuri, who said: 'Any
way we can get figures about this illness is good news.'

Dr Nigel Hunt, GP and Associate Director of Postgraduate GP Education,
Eastern Deanery, has also praised the idea for its practicality. He has
been advising the Trust over its implementation.

In 2006, speaking at the Westminster Conference, I called for ME to be
made a notifiable illness, and recently compared the situation on ME with
the ease of obtaining figures on swine flu. I am pleased to see my call
being taken up and supported by others. The seriousness of this
neurological illness has been minimised for far too long.

WITNESS STATEMENT

The Trustees have also decided to publish my Witness Statement, written
at the request of the patients who brought NICE to Judicial Review. The
Judge quoted my Statement in his Judgement, which makes it a public
document. He said:

'In 1988 the US Centres for Disease Control introduced the term, Chronic
Fatigue Syndrome. However, a witness statement deployed by the Claimants
from Jane Colby (Executive Director of the Young ME Sufferers Trust)
plainly draws a distinction between ME and, what she describes as, 'the
artificial construct called Chronic Fatigue Syndrome.'

THE POLITICS SHOW UPDATE

In the run-up to ME Awareness Month the Trust worked with The Politics
Show on an awareness-raising feature which was shown on Sunday 10 May at
the start of ME Awareness Week. At the time of sending this Alert, you
can find the feature including an interview with Jane Colby on YouTube at
http://www.youtube.com/watch?v=uBBFpawh-WM

The entire show is available until Sunday 17 May at
www.bbc.co.uk/iplayer/episode/b00kg98b/The_Politics_Show_London_10_05_2009/

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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