Select Committee on Education and Skills Written Evidence

Memorandum submitted by The Young ME Sufferers Trust


  The Young ME Sufferers Trust works with Nisai Education to provide a virtual classroom for Stage 3 pupils with ME/CFS and free over-16 virtual education for students with ME/CFS in conjunction with the Learning and Skills Council.

  Full information about The Young ME Sufferers Trust including an endorsement by the Prime Minister is at   

  The Trust's "Tymes Trustcard" is a pass card for children with ME in school, endorsed on its launch by Education Minister Baroness Ashton and by the Secondary Heads Association and supported by Lord Clement-Jones CBE and Earl Howe.

  The Trust is the longest-running support organisation for children and young people with ME and specialises in education. It runs an Advice Line, a Professionals Referral Service for doctors, teachers and others, and produces VISION, an informative magazine in which children are encouraged to express their views. The Trust's publications are available free of charge on its website


  1.  ME—also known as Chronic Fatigue Syndrome or ME/CFS—is the biggest cause of Long Term Sickness Absence from School, as first discovered by Dowsett and Colby (1997 Journal of Chronic Fatigue Syndrome). This is the largest study of ME ever undertaken. Dowsett and Colby studied a school roll of 333,024 children and 27,327 staff. They also found clusters of the illness.

  2.  There is now abundant research evidence that this is an organic illness and not a psychological disorder, yet many children with ME are still not being offered education suitable for their needs, and to enable them to perform to their ability in examinations. They suffer widespread discrimination against their disability.

  3.  Children with ME fall into two categories. They suffer from a chronic illness but they also have special educational needs because of its effects upon both the body and the brain. They often need part-time or home-based education, curriculum modifications, and special arrangements for examinations such as extra time, rest breaks and sitting the exam at home. These assist children with ME to perform to their ability when seeking qualifications and minimises the educational disadvantage caused by the effects of the illness on the brain. The authors of a paper revealing further objective evidence of cognitive dysfunction recently said that sufferers "appear to have to exert greater effort to process auditory information as effectively as demographically similar healthy adults. Our findings provide objective evidence for the subjective experience of cognitive difficulties in individuals with CFS."

  4.  Section 19 of the Education Act 1996 requires Local Education Authorities to make suitable provision for all children and young people who cannot attend school by reason of illness. But there is a significant overlap between medical and special educational needs in this illness and it is often virtually impossible to separate the two. Schools have a Duty of Care as well as a duty to provide suitable education for children with special educational needs. In ME these two overlap, since too much mental concentration can produce physical relapse and physical relapse means that the child can no longer study. School attendance or inappropriate educational demands are a key cause of relapse; this results in further educational disadvantage.

  5.  Two years ago, a study by The Young ME Sufferers Trust ("The Forgotten Children" 2003) found that 87% of 126 young people it consulted had struggled for recognition of their needs and 81% had had to change schools to gain such recognition. Sadly, the Trust is still receiving similar reports.

  6.  Such is the concern amongst young people and their families that this year, young members of the Trust, through its study "Our Needs Our Lives" (April 2005) have asked if new ME/CFS clinics being set up with NHS funding will support the Tymes Trustcard, which is a school pass card system set up and run by the Trust with the support of the Secondary Heads Association. The card protects the needs of young people with ME in school. However, we have no evidence as yet of this being done.

  7.  The Young ME Sufferers Trust has also set up a partnership with a private firm Nisai Education to provide a Virtual Classroom for secondary age children unable to attend school due to ME—a scheme which I was pleased to launch in 2004. They have secured 50 places for those over 16 to continue receiving free education. More government and LEA support for such virtual education schemes is needed, especially as it is not home-based education that isolates these children, it is the nature of their illness. The virtual classroom enables interaction with other pupils whom they may later meet, as well as increased educational achievement and support for recovery.

  8.  At the moment, evidence from families strongly suggests that both the special educational needs and the medical needs of children with ME are not being sufficiently addressed by schools and Local Education Authorities despite many government and professional publications.

  8.1  In 2001, The Dept for Education and Skills stated in its statutory guidance "Access to Education for Children and Young People with Medical Needs" that "pupils who are unable to attend school because of medical needs should be able to access suitable and flexible education appropriate to their needs".

  8.2  In 2002, Chapter 5 of The Chief Medical Officer's Working Group Report (Dept of Health) stated that: "nearly all children who are severely affected and many who are moderately affected will require the provision of home tuition and/or distance learning." Jane Colby was a member of the Working Group on Children.

  8.3  In 2004, The Royal College of Paediatrics and Child Health stated that "as a general rule reintegration should be slow and cautious" and drew attention to the Dept for Education and Skills recommendation that a resumption of education in whatever form should be planned in a way which ensures that children and young people do not feel under pressure to study. It refers to the virtual classroom as a means of providing continuing education for children and young people with ME.

  8.4  Unfortunately, parental reports suggest that these and other recommendations and statutory guidelines are too often disregarded. Denigratory remarks have been made, and continue to be made, together with suggestions that children with ME do not have genuine special educational needs.

  9.  It appears that LEAs are unwilling to make Statements of Special Educational Need for children with ME. Recommendations under the Code of Practice are often inadequate. The Trust has published the first ME/CFS guidelines for Educational Psychologists (September 2005) but believes that teacher training in the needs of pupils with ME is urgently needed. The Trust has run such courses, after which teachers have felt much better equipped for their task. A teacher who had attended one of the Trust's courses won the first Thorntons Award for supporting her pupil.

  10.  Schools breach their Duty of Care if they insist on school attendance or fail to make suitable provision and thereby make the child worse. Discrimination issues arise when special educational needs are not provided for and special arrangements for examinations are not offered or the school refuses to apply to the Examinations Board. Ofsted is expected to identify a lack of suitable provision for these children but parents report to The Young ME Sufferers Trust that in their view these deficits are not being picked up in inspections.

  10.1  The Trust holds on file a host of letters, emails and completed questionnaires from parents describing unkind and ignorant treatment at the hands of teachers and others in the education profession. To quote from a parent who recently contacted The Trust: "When I spoke to the head of the sixth form on Friday afternoon she said there wouldn't be a problem if she went to school! It staggers me—I think that most people cope by pretending that it can't really be a `proper' illness."

  10.2  The entire paragraph from this parent's letter reads: "We all have to put up with general disbelief in the condition. It has been made very clear to me in recent months from other parents behaviour round me that they think my daughter is unbalanced, school phobic, exam phobic, neurotic and suffers from panic attacks. The headmaster did admit to me recently that the school had never had a student who over the years had missed so much school. She was the only one in her year who did not attend the prom organised by her year on Saturday evening. They didn't bother to invite her in the first place, and she probably was not well enough to be there, but it would have been good to have been included. I know that this is considered by the other children in her year as yet another example of her being odd and not fitting in. One parent told me that no-one at school believes that she is ill because sometimes she gets to go out and do interesting things. We didn't receive the information from school about the sixth form, because she had been left off the list, and when I spoke to the head of the sixth form on Friday afternoon she said there wouldn't be a problem if she went to school! It staggers me—I think that most people cope by pretending that it can't really be a `proper' illness."

  11.  Lack of specialist knowledge, educational techniques, suitable courses, facilities and examination arrangements is still turning children who could potentially obtain qualifications into failures with few or no qualifications to their name. What is almost worse is that many believe it is their own fault.

  12.  The Trust is calling for urgent training programmes for teachers to give them the understanding and skills necessary to ensure that government statutory guidance is indeed followed for these children, whose condition is unique in its mixture of medical and special educational needs.

October 2005

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