TYMES TRUST ALERT
25th April 2009

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

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THE BRIEF: Special Problems of Children with ME/CFS

THE POLITICS SHOW ME feature has been rescheduled for 3rd May.

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Have you read the latest issue of THE BRIEF on our Publications Page?

 NICE Guideline Judicial Review - the aftermath
 Enteroviruses Persist in Muscles
 Focus on Special Problems of Children with ME/CFS
 Enterovirus Project - Next Steps

The Journal of Clinical Pathology has kindly allowed me to republish my
review of ME in children, which they commissioned and published in 2006.
You can find it on the publications page, entitled 'Special Problems of
Children with ME/CFS and the enteroviral link'.
www.tymestrust.org/pdfs/specialproblems.pdf

Such articles can make a big difference. You may remember parent Karen
Mason writing how her daughter's social worker had printed copies of the
Trust's professional guide, The SENCO's Key Role in supporting pupils with
CFS/ME: 'I had been at a very low ebb until I read those guides.
Everything in them perfectly described what Bryony had been (and still
was) going through, even down to the more seemingly "eccentric" symptoms
of ME. In fact it was like reading something that had been written about
Bryony. We wasted no time in handing them out to the school and Integrated
Support at the following review meeting and I couldn't help but notice
that the teacher in charge of Bryony's case seemed to (quite visibly) sit
up and take notice when he saw it was written by a former head teacher.
Thanks to that report, they have a better understanding of just how much
of an impact ME has on the life of a sufferer.'

You can now explain about the link with viruses using my review from the
Journal of Clinical Pathology. It covers:

    Scale of the problem in children

    Pattern of illness in schools

    Clustering of cases

    Energy-efficient education

    Evidence for persistent viral infection

I also discuss making ME a notifiable disease due to the encephalitic
nature of the effects on the brain.

www.tymestrust.org/pdfs/specialproblems.pdf

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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