Campaign news from the Young ME Sufferers Trust | 7 November 2012

November 8, 2012

Poster-a-Poster Campaign and MiniVision – Exploding ME Myths

Recently, I've been advising the Department for Education on the educational needs of children with ME. I can report to you that my advice has been accepted and we now wait for the published copy of the new statutory guidance.

Those of you who have joined the Trust will have received through the post a copy of our latest poster ‘DON'T MAKE ME FAIL AT SCHOOL' which is now online here:

On the reverse is our Statement on Virtual Education, an excellent educational option. There is also an excerpt from Lord Clement-Jones' speech. Lord Clement-Jones says: “When the student makes an effort, oxygen levels in the brain can fall instead of rising to copy with the demand. Obviously, it can be next to impossible to study effectively after struggling into school.”

‘Why home-based education helps' by Jane Colby and Lord Clement-Jones CBE is now online here:

If you would like more copies to hand around, they are £3.35 for 10 (inc P&P). Just send a cheque to the address below this Alert.


We also sent you a copy of MiniVision, which looks lovely in full colour, especially the photos of our House of Lords Education Awards event, and the winning artworks sent in by our young members.

Myths that we explode in MiniVision:

* Home-based education needs the recommendation of a consultant

* Progressively increasing school attendance promotes recovery

* ME requires treatment to improve

* Rest is bad, and returning to school early is good

NONE OF THESE ARE TRUE. Dr Dowsett always pointed out that the general tendency of ME is to improve naturally, but it's easy to make it worse. For example, it's great when children are well enough to be in school with their friends, but as our Chair of Trustees writes, regarding the push to increase attendance: ‘In effect, this is the educational equivalent of Graded Exercise Therapy (GET)'.

And we all know from experience that only when the body is once again strong enough to stand it, can exercise be helpful.

YOUNG HEARTS DAY, Thursday 29 November

Don't forget we're collecting poems again. Young Hearts is our book of poetry by children and young people with ME, and also their parents. Copies are still available for £7.95 – they make a lovely present. Here's a review:

Do you have a poem in you? You can email it to me using the Contact Us form at

We're picking a winner, and we're intending to collect and publish many others. If you're a member of 26+ (our adult group, including friends and supporters) we'd like your poems too. Poems don't have to be about ME.

If your child would like to contribute but is too severely ill to write, do please ask them to tell you what they'd like to say and how they feel, send those thoughts to me, and I'll put them together into a poem for them.

I can still remember being very severely ill myself. It's not something I'm likely to forget, and I would be happy to give these children a voice.

With all my best wishes


Jane Colby FRSA
Executive Director
The Young ME Sufferers Trust
PO Box 4347, Stock, Essex, CM4 9TE
Tel: 0845 003 9002

Holder of The Queen's Award for Voluntary Service:
The MBE for Volunteer Groups

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