M.E. often has a dramatic effect on children’s education and is the most common cause of long term sickness absence from school in the UK*. Education must be tailored to the needs of the individual and care should be taken not to commit the child to too much work; it is better to enjoy doing one subject than to struggle with three and end up more ill, frustrated and demoralised. There is no legal requirement for a child to attend school, only to be educated, although some children are too ill for any form of education. Depending on the illness, a variety of methods can be used such as home tuition, part time school or college, correspondence courses and tuition by phone, fax or E-mail. You may find talking books or educational TV programmes more accessible than text. AYME has an educational advisor and a video teaching pack for schools (priced £20). Tymes Trust has documents to give to professionals or to use yourself (listed below). The ‘Professionals Referral Facility’ is a network of professionals available to Tymes Trust members, who will advise families direct e.g. exams officer, home-tutor co-ordinator, educational psychologist, social worker and specialist doctors. The ‘Tymes Trustcard’ can be carried by pupils with M.E. to show that they are entitled to make use of special facilities. (See Young People for details of AYME and Tymes Trust). Appropriate exam concessions (such as rest periods) should be available but need to be applied for in advance. There is no age limit for taking GCSEs; loans may be available for people of any age. A Dictaphone can be used to tape lectures at school or university.
Anna Grace Lidstone writes in the Young Action Online document YAO Learn and Live – A guide to the Open University : ‘Be organised. There is an awful lot of paper and it looks much scarier if you don’t file it promptly. If possible have a space specifically for study, away from distractions, so that you don’t have to waste valuable energy transporting course material from shelf to table. Learn to spot the early signs of ‘brain fatigue’ and act accordingly - it’s far better to take lots of short breaks than to work yourself into relapse. ALWAYS put your health and well being first’.
Computer : Headaches : Memory : Over-Stimulation : Pacing : Paperwork : Reading : Talking books : Television and Radio : University : Writing : Young People
Interaction 30; 1999; pages 18-19 Studying with M.E.; YAO Students & M.E.; YAO School Examinations & M.E. Special Assessment Arrangements; YAO Guidelines for Schools; YAO M.E. & Learning; YAO Your M.E. Assembly £3.50 (a pack for pupils and teachers); YAO Learn & Live - a guide to the Open University; TYMES Education Special £1.50; TYMES Internet Special £1.50 (features experiences of computer learning); InterAction 35; 2000; page 35 Schooling and M.E.; InterAction 30; 1999; pages 18-19 Studying with M.E.
* DOWSETT E.G, COLBY J Long Term Sickness Absence due to M.E./ CFS in UK Schools: An Epidemiological Study with Medical and Educational Implications Chronic Fatigue Syndrome 1997; 3:29-42