Support for Parents of Children with

 Chronic Fatigue Syndrome


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Jane Colby (Former Head Teacher Member, National Association of Educational Inspectors, Advisers and Consultants Executive Director, The Young ME Sufferers Trust Member, Chief Medical Officer’s Working Group on CFS/ME) looks at how recent DfES guidance has impacted on the largest group of pupils off school with long-term sickness – those with CFS/ME. This Guide analyses how relapses in children with ME are being caused by inappropriate programmes of reintegration arrived at through misinterpretations of the statutory guidance Access to Education for Children and Young People with Medical Needs.

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Parents Power strengthened

Association of Young People with ME (AYME)  has strengthen the power of parents to demand suitable education for children with ME/CFS. In a letter to AYME’s CEO, the Minister of State for Children and Families, says that the proposals in the government’s Green Paper, Support and aspiration: A new approach to special educational needs and disability, will place a stronger duty on schools and local authorities to ensure the suitable education for pupils who have a long-term medical condition, such as ME/CFS.Mary-Jane Willows said: “Where a child is refused the right kind of support and education, parents could use this letter to ensure the school and local authority provide the support to meet their needs of their child”.

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Chronic Fatigue Syndrome/ME has been discussed in The House of Commons“The history of the condition, suggested causes and research are considered. Conflicting views on cause and treatment have resulted in uncertainty for patients.” Alex Sleator, SCIENCE AND ENVIRONMENT SECTION, HOUSE OF COMMONS LIBRARY

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The Department of Health has set up a working group on CFS/ME which will aim to promote a better understanding of the illness, to produce advice and information on aspects of clinical management, and to set out the evidence on which this information is based

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