At our Committee meeting in December 2012, we agreed to emphasise the needs of children and young people with ME in our awareness and publicity work for 2013, which culminated in our AGM in September, when Jane Colby, Executive Director of the Young ME Sufferers (TYMES) trust, gave a talk about this topic (read notes). We know that members who have children with ME are facing a lack of understanding of its severity and sometimes suspicion from schools which is leading children to relapse. As one parent says: A sad and totally avoidable situation if people had listened to us and our consultant.” If you are a school or college authority interested in one hour of our ME Awareness sessions (free of charge), please contact us emailing to randkmegroup@yahoo.co.uk.

 

Tymes Trust has a wealth of publications available for download from their website here. In particular note:

 

Other publications you could review are:

Secondary Schools Information Pack

We have produced an information pack which is aimed at people responsible for pupils at secondary schools, in order to acquaint them with the specific problems faced by children and young people with ME. The main documents in the pack can be reached via the following links.

Action For ME Examination Concession Factsheet 

Tymes Trust Factsheet on the Education of Children with ME 

Richmond and Kingston ME Group Useful Tips Factsheet  

Richmond and Kingston ME Group Factsheet For Head-Teachers 

Richmond and Kingston ME Group Useful Resources on Children with ME  

Useful Links

Association of Young People with MEAYME (pronounced ‘aim’) is the largest charity for children and young people with ME/CFS, with over twenty years of knowledge and experience about how this illness affects children and young people. Local rate helpline: 08451 232389 Monday–Friday, 10am–2pm.

ME Teens Facebook SiteThis is a closed Facebook group for teenagers from 13 with ME/CFS to come together and share interests and make friends. Please feel free to post music, TV clips, artwork and design, photography, anything creative, humorous and uplifting for others to enjoy.

Tymes TrustTymes Trust is the longest established national UK service for children and young people with ME and their families. It is a respected national charity whose entire professional team give their time free of charge. They work constantly with doctors, teachers and other specialists, and played a major role in producing the children’s section of the Department of Health Report on CFS/ME (2002). Telephone: 0845 003 9002 Advice Line hours: 11am–1pm and 5pm–7pm weekdays. Outside these hours you may leave a message and they will call you back.

Off The Record TwickenhamIf you are a young person aged 11 to 24 who lives, studies or works in Richmond borough, then you can use these confidential services. Everything is free, however we may ask for a donation for counselling if you are over 18 and in work.

Some handy hints about helping young people with ME can be found here.

 

 

 

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 20-minute video of how ME has affected the life of 4 teenagers.

 

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