Resources on Young People
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 firstname.lastname@example.org.
- Jane Colby, “False Cases of Child Abuse”, 2014.
Jane Colby, “Professional Guides: Ten Points on the Education of Children with ME”, 2000.
Dr Alan Franklin, “The Doctor’s Guide to ME in Children and Young People”.
Jane Colby and Joanna Smith, “Child Protection Issues: A Presentation to the All-Party Parliamentary Group on ME”, 2008.
Elizabeth Dowsett and Jane Colby, “Long-Term Sickness Absence due to ME/CFS in UK Schools: An Epidemiological Study With Medical and Educational Implications”, 1997.
Other publications you could review are:
Department for Education, “Ensuring a Good Education for Children Who Cannot Attend School Because of Health Needs”, January 2013. This statutory guidance has taken account of the advice of the Tymes Trust (The Young ME Sufferers Trust ) in many aspects. The guidance clarifies what must be done by local authorities for children who cannot attend mainstream or special schools due to illness.
E Crawley, AM Emond and J Sterne (BMJOpen): “Unidentified Chronic Fatigue Syndrome (CFS/ME) is a Major Cause of School Absence: Surveillance Outcomes from School-Based Clinics”, 2011.
ME North East with TalentStar: “ME: All About Me”, 2010, a 21-minute video featuring teenagers with ME/CFS. To see this video, click on the image below.
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.
Association of Young People with ME: AYME (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 Site: This 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 Trust: Tymes 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 Twickenham: If 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.