Carole…

…speaking through art, poetry and humour…oh and politics too!

ME Awareness Day from Tymes Trust.

Tymes Trust ME Awareness

There will be a twitter Q&A conversation between 3 and 5pm today (12th May) To join in use hashtag #AskTT or tweet to @JaneCColby

The following is a statement from Tymes Trust for ME

http://www.tymestrust.org/txt/alert201305meawarenessday.txt

It includes both: 

ME AWARENESS DAY PUBLICATIONS

STATEMENT ON NEW RESEARCH COLLABORATIVE
Tymes Trust Alert 2013-05
Message from Jane
12 May 2013

======

Follow Jane on Twitter @JaneCColby
or read her tweets at www.tymestrust.org

======

ME AWARENESS DAY PUBLICATIONS

STATEMENT ON NEW RESEARCH COLLABORATIVE

======

Greetings everyone!

For ME Awareness Day we have published an ME Awareness booklet
summarising our view of how things stand in 2013. If you have joined the
Trust you'll have received a printed copy by post. It's now also online
here: www.tymestrust.org/pdfs/meawareness20132014.pdf

The booklet covers:

* Unsuitable regimes - Families have the right to decline

* Research - What causes ME?

* ME v CFS - Dr Byron Hyde and Professor Bruce Carruthers

* Child Protection Implications - Severity or chronicity trigger
  investigations

* Fatigue Clinics are not ME Clinics - The 'fatigue' model

* Managing Education and School - Webinar for Local Authorities, schools,
  parents

* Seb's Awareness Spread with a rhyme to complete - and Gregory's
  Poohsticks, another jolly picture for colouring.

We have also updated our Quick Tour of ME, here:
www.tymestrust.org/pdfs/quicktour.pdf

Available as a printed 3-fold leaflet, the Quick Tour summarises ME, its
symptoms and management in an easily digestible form.

Q&A on ME Awareness Day

My Twitter followers will be taking part in another Q&A session today.
They will tweet their questions to @JaneCColby using the hashtag #AskTT
from 3-5pm. If you don't use Twitter, you can still check out my tweets
at www.tymestrust.org.

We have recently issued a statement which you may have seen on various
internet forums. Here is your own copy, for reference.

STATEMENT BY THE YOUNG ME SUFFERERS TRUST

The Young ME Sufferers Trust is issuing this statement to clarify our
reasons for not accepting an invitation to the launch of the UK CFS/ME
Research Collaborative in London on 22nd April 2013. We will not be
participating in the Collaborative.

Key issues

* Our research priority

This Collaborative is continuing down the chronic fatigue route. By
contrast, our priority is to end the confusion of including ME (myalgic
encephalomyelitis), understood for decades by microbiologists as a
persistent viral infection, under the umbrella term of CFS (chronic
fatigue syndrome) which mixes patient cohorts and confounds definitions,
research and treatment.

Good quality biomedical research, relevant to ME, is vital. We ourselves
co-funded such a study which showed blood abnormalities in children,
consistent with a persistent viral infection. Our research priority is
for enteroviral studies. Years of research by virologist Dr John Chia of
the Enterovirus Foundation is validating ME as a persistent viral
infection; his work on 'CFS/ME' should surely be repeated in the UK
under ME criteria, for it could be that, in future, vaccinations and
antiviral drugs will be effective.

* The Collaborative Charter

We would never sign up to such a Charter. This Charter, which
Collaborative members must adhere to, contains 'gagging' clauses which
appear to us to equate legitimate criticism and concern for patients
with harassment. In our view it is intimidatory and entirely against
transparency.

* Charities

We believe that charities signing up to this Collaborative and its
Charter are repeating the mistakes of history, some examples of which
are detailed in our address to the Scottish Cross Party Parliamentary
Group on ME in 2004. You can find this address here:
www.tymestrust.org/txt/view200403scottishparliament.txt

* Direction

Back in 1996, the national charities of the time rolled over and
accepted the term 'CFS' as a result of the Royal Colleges Report, where
the lead was taken by the psychiatrists. Subsequent events have proved
that it is unwise to compromise on one's principles, and the Trust will
never do that.

The Young ME Sufferers Trust
www.tymestrust.org

END OF STATEMENT

Let's all stand together in continuing to spread awareness of ME and as
always, the Trust will do its best to assist you in your own situation.

All our 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

======

READ ALL PREVIOUS ALERTS AND SUBSCRIBE TO MY LIST AT www.tymestrust.org
To unsubscribe, send an email via the website Contact Us form.

======

You are welcome to redistribute or reprint this email without
seeking our permission provided: 1) you do not abbreviate, add
to, or change the text in any way; 2) the authorship information
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 life member of the National Association of Head Teachers
and a Fellow of the Royal Society of Arts.

Copyright (c) 2013 The Young ME Sufferers Trust
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Written by carolecarrick

May 12, 2013 at 12:49 pm

Posted in Uncategorized

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