25 December 2009
Jane Colby FRSA
Executive Director
The Young ME Sufferers Trust
www.tymestrust.org
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VISION 2009-3 now online in full colour
www.tymestrust.org/pdfs/vision2009-3.pdf
THE BRIEF - Jane Colby's complete Witness Statement
www.tymestrust.org/pdfs/brief2009-3.pdf
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To wish you seasonal cheer and let you know that Vision 2009-3 is now =
online
in full colour, plus the latest issue of The Brief, consisting of my =
(Jane
Colby's) complete Witness Statement to the Judicial Review of the NICE
Guideline on CFS/ME.
You can also read a Christmas message on our home page from Burn Gorman
(Torchwood, Bleak House, Wuthering Heights and recently Bill Sykes in =
Oliver
Twist at the Royal Court Theatre, Drury Lane). Burn joined us at our =
first
Learning Commitment Awards at the House of Lords.
www.tymestrust.org
Special thanks to those who have sent us cards and messages of support. =
In
his Vision column, our Chair Keith Harley writes about how the Trust =
runs on
the principles of Philanthropy, Efficiency and Independence. He points =
out
that 'no-one at the Trust is paid for their time and commitment' and
explains that 'during the last financial year, we managed to provide all =
our
services, including all costs for administration, telephone, post, =
travel to
the Houses of Parliament and other essential venues, plus your birthday =
and
Christmas cards, individual information packs, services to Partner =
Groups,
printing of Vision, MiniVision, The Quick Tour and all those many other
costs that come with running a charity, for the total sum of =A310,134.'
Keith continues: 'Those of you who run businesses or manage finances =
will
know what an achievement this is. It certainly couldn't be done without
loyal and regular work by our Team who give their time in so many ways.
[...] I realise that, of course, by drawing attention to our
cost-effectiveness we might give the impression that we don't need your
fundraising efforts. Far from it! We receive no government grants; =
indeed,
we do not seek them as, in the words of Libby Purves, such grants come =
with
implications. As she aptly put it in The Times (23rd December 2008)
"Government grants also act as a secret gag, preventing harsh =
plain-speaking
against bad policies by those who know their stuff".' Our independence =
is of
prime importance to us.
My Witness Statement in The Brief was written from this same =
perspective. I
had been asked to address directly certain statements from another =
charity
about the NICE Guideline; I pointed out, among other things, that their
'description of the benefits of this Guideline bears little resemblance =
to
the reality with which we come into contact in our work.' I concluded =
that
although there were some recommendations in the Guideline which were not
unhelpful, 'it is not worth preserving that which is good if it means
propping up that which is monumentally bad.' When the Guideline comes up =
for
review, the Trust will be making further representations.
VISION 2009-3 IN SUMMARY:
Vision : The Project - Philanthropy, Efficiency, Independence
House of Lords 2010 - Your display : 'How ME Affects Me'
Review of 2009 - Judicial Review of NICE, RSM Conference, ME and Viruses
Burn Gorman's Christmas Message - Strength, determination and peace
Things 4 U 2 Do - Story challenge, find the missing rhymes, colouring
Seb's Amazing Art Archive - What makes you smile?
Young Officers - Advocate, Artist UK, Competition Champ, Artist Overseas
21st Anniversary Presentation - Host, Colchester ME Self Help Group
AND
Mr Harley's Misbehaving Menagerie - Could you give one a loving home?
With warm thoughts from all of us at the Trust.
Jane
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is retained; and 3) www.tymestrust.org is credited as the source.
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
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