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Family Testimonies : The Use Of Interactive Virtual Education For Young People With Myalgic Encephalomyelitis (ME)
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|NO, YOU DON'T KNOW BEST||/ DON'T MAKE ME FAIL AT SCHOOL|
|PLEASE DON'T WAKE ME UP||/ ME IS JUST FATIGUE, RIGHT? WRONG|
|STOP DAMAGING EXERCISE TREATMENT FOR CHILDREN WITH ME|
|Recognition of our work and messages of support for the children.||
TYMES TRUST STATEMENT
Tymes Trust is appalled at the postponement of the new NICE Guideline on MECFS which has been finalised after three years' rigorous work and review of the evidence.
It is extremely important that the new Guideline is published to avoid any more children with ME being made worse by inappropriate and misguided therapies, or their parents being unjustly accused of making their children ill when these therapies do not work. The Trust has had to advise hundreds of such families and this situation must not continue.
The majority of families who contact the Trust also report that their children are being forced to attend school while still unwell, provoking relapses from their illness. NICE's recommendation that online education can be helpful is therefore very welcome and cannot come too soon.
We therefore urge NICE to publish the Guideline without further delay.
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|Jane Colby's new book. Free pages & Stripeysocks blog.|
Young Hearts is a collection of inspirational poetry by over 40 children and young people with ME aged 7 to 26. Foreword by Terry Waite CBE. This book was originally the dream of Tymes member Jade Louise Scarrott who was so tragically taken from us in a road accident at the age of 14. She wanted to raise awareness and understanding of ME in children. A review was published by Special Children magazine.
To commemorate Jade Louise Scarrott we present the ITV Central News feature on childhood ME which was prompted by the publication of Young Hearts. Includes interviews with Jade's mother Karen and Jane Colby.
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