Registered Charity 1080985

Tymes Trust is the only national ME charity dedicated to children and young people with ME and their families. Our entire team work pro bono and in 2010 we received the Queen's Golden Jubilee Award for Voluntary Service, for pursuing the educational rights and advancing the care of children with ME. We played a major role in producing the children's section of the Dept of Health Report on CFS/ME (2002).

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TYMES TRUST STATEMENT
THE "PAUSING" OF THE NEW NICE GUIDELINE

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.

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.