Tymes Trust Alert 2017-03 : YOUNG HEARTS DAY, CHRISTMAS LABELS, NICE UPDATE
Message from Jane
19 November 2017

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YOUNG HEARTS DAY, CHRISTMAS LABELS, AND NICE UPDATE

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Dear All

As many of you will know, WEDNESDAY 29TH NOVEMBER is TYMES TRUST'S YOUNG
HEARTS DAY. This is the day when we remember all children with ME. If
you would like your child to have a Young Hearts Gift from us to let
them know they're not forgotten, please send us details as soon as
possible on the Contact Us form at www.tymestrust.org. We do not charge
for these gifts, as it is a very special day.

We will also be lighting a candle on the day, and posting a photo of it
on Facebook at www.facebook.com/tymestrust, on Twitter @tymestrust and
on Instagram at janeccolby.

We invite you to light your own candle and post a photo of it on your
own social media accounts to raise awareness of children with ME and
Tymes Trust's Young Hearts Day. On Twitter, use the hashtag
#YoungHearts. If you would like to email us a photo of your candle, send
us a message on the Contact Us form at www.tymestrust.org and we'll tell
you where to email it.

Young Hearts Day all began with the launch of our Young Hearts poetry
book in remembrance of a child with ME. Terry Waite CBE, former special
envoy to the Archbishop of Canterbury, launched the book on 29th
November 2004 in Warwick Castle. Ever since then we have marked the day
each year and all of you out there have joined in!

CHRISTMAS LABELS - FESTIVE TREE

As usual, we have Christmas labels for you to stick in your cards and on
your envelopes. You can see this year's Festive Tree design at
www.tymestrust.org.

To order, just make a donation, then let us know how many stickers you'd
like and we'll send them back by return. We've already sold out once via
social media! But we have plenty again now. If you would prefer an image
of the Holy Family, we have those for you too. And if you like to use
cards from other charities - well, you can always use our stickers as
well, to indicate that you support both charities.

You can donate on the Donations Form here
http://www.tymestrust.org/donations.htm

You can order on the Contact Us form here
http://www.tymestrust.org/contactus.htm

Or it's fine to post us a cheque made out to Tymes Trust, along with
your order.

NICE UPDATE

We were delighted when NICE decided to have a complete rewrite of its
Guideline. We are also pleased to see that they have taken note of
points we made in our Submission, such as the problem of False
Allegations against families, and the need to have regard to the
heterogeneity of "CFS" - a woolly category into which true ME has been
incorporated, meaning that doctors may not know which patients will be
made worse by undertaking therapies involving exercise. We look forward
to the rewrite, which will be out in 2020.

A REMINDER OF OUR FULL SUBMISSION
http://www.tymestrust.org/pdfs/ttnice201707.pdf

All the best - and don't forget that Joint Parent and Child membership
of the Trust is just £10 a year.

I look forward to seeing your candles!

With all good wishes

Jane

Jane Colby FRSA
Executive Director

The Young ME Sufferers Trust
PO Box 4347, Stock, Essex, CM4 9TE
www.tymestrust.org
Tel: 0845 003 9002

Holder of The Queen's Award for Voluntary Service:
The MBE for Volunteer Groups

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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 life member of the National Association of Head Teachers
and a Fellow of the Royal Society of Arts.

Copyright (c) 2017 The Young ME Sufferers Trust