TYMES TRUST ALERT
1st October 2008

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

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NEW : THE BRIEF (2008-2)
NEW : SELF-HELP PUBLICATION: EXPLAIN YOUR ABILITIES

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A new issue of The Brief, our regular information supplement by
Jane Colby, is now online.
www.tymestrust.org/pdfs/brief2008-2.pdf

> From today, the Trust will publish issues of The Brief on our website
alternately with issues of Vision, so we shall have new publications for you
more often than hitherto. We hope you will like this change. The Brief will,
as usual, be included as a pull-out inside printed issues of Vision.

Some of the subjects covered in this issue of The Brief are:

 Child Protection Issues : Presentation to All-Party Parliamentary Group
 Oxygen Deprivation During Exercise Confirmed
 Focus on : Explain Your Abilities (new publication)
 ME? It's Kids' Stuff : Virus spreads in schools

FROM EXPLAIN YOUR ABILITIES:

This new document contains a questionnaire designed for you to complete and
give to teachers or other professionals.

'How do you explain to a teacher how ME affects your child? How do teachers
gain a fair picture of what a child with ME can do? The questionnaire was
designed by Educational Psychologist Naomi Burgess and former Head Teacher
Jane Colby as an initial tool to show up the extent of problems and to
clarify how much a child can safely manage. It is presented in 'plain
English' which means it's in simple, clear language suitable for young
people [...]

'Other free Trust publications are recommended to give certain
professionals, such as the SENCO's guide which is useful for the school's
Special Educational Needs Co-Ordinator.'
www.tymestrust.org/pdfs/explainyourabilities.pdf

FROM THE BRIEF:

FRONT FEATURE

'In July, I went to London to the Palace of Westminster with Joanna Smith,
who is one of our parents and also a Welfare Rights Advisor for Brunel
University, to give a presentation by invitation of the All Party
Parliamentary Group on ME concerning Child Protection Issues. Our
presentation addressed what happens in Child Protection procedures, gave
details of misunderstandings over parental or carer influence where children
with ME are concerned, and chronicled the personal experiences of a parent
of a Trust member.

'I also presented the Trust's recommendations to help stop the
misapplication of Child Protection measures to the families of children with
ME. As I said at the time, we cannot just continue to discuss this problem
and wring our hands over such injustices. I have been fighting this since
the 1990s and indeed, I did the survey for the BBC Panorama programme which
revealed the statistics of the problem at that time. Now these cases seem to
be escalating again. I have reopened my discussions with Dr John Sentamu,
the Archbishop of York [...]'

FACTS AT YOUR FINGERTIPS page ii

Appeals President Criticises DWP and ATOS:
'The President of Appeal Tribunals has criticised the Department of Work and
Pensions for having made no improvement in the standard of decision making
in the last 10 years and criticised ATOS doctors for failing to listen to
claimants [...]'

Oxygen Deprivation During Exercise Confirmed:
'It has been noted that when people with ME/CFS undertake exercise, brain
perfusion with oxygen decreases instead of increasing [...]'

Universities and the Disability Discrimination Act:
'University websites often provide specific advice on the Disability
Discrimination Act. The Open University, which is generally helpful to
students with ME, states: "Under this legislation disabled people have equal
opportunities..." [...] '

BACK FEATURE

ME? It's Kids' Stuff

'For decades the notion that ME was caused by viruses was widely dismissed.
This in turn has caused ignorance of how it spreads. As this year's guest
speaker at the Clywd ME Conference, I reviewed the evidence from my 1996
book ME - The New Plague and linked it with new evidence from a US
virologist who is providing physical proof [...]

'When bird flu came along, a headline in The Times screamed: "Bird Flu? It's
kids'stuff". The article starts: "If avian flu infects humans, it will be
spread through schools." So, when it's an illness everybody's terrified of,
people immediately understand that it is spread through schools [...]'

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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) 2008 The Young ME Sufferers Trust