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by JaneColby on Sat Aug 17, 2013 10:27 am


Dr Caroline Grayson wrote on this forum that The Young ME Sufferers Trust (Tymes Trust) does not follow NICE Guidelines. In an appraisal of the NICE Guideline (Vision 2007-2) the Trust wrote:

"NICE has acted on a number of the Trust’s recommendations [...] NICE recommends a flexible approach to education, with home tuition and equipment that ‘allows a gradual reintegration into education’. This does not say ‘reintegration to school’, reflecting our recommendation that education should not necessarily mean school attendance. There are other means of learning which may be more suitable, such as the interactive online schemes for which the Trust is in partnership with Nisai Virtual Academy."

"NICE advises doctors: ‘do not use time in education as a sole marker
of progress of CFS/ME [this was a strong recommendation by the
Trust], and ensure a balance between education and home and social
activities.’ We know that school attendance has unfortunately been
used as a marker of recovery without reference to whether symptoms are
provoked, or whether attendance is hindering academic progress."

The Trust's appraisal also explains that NICE "emphasises the individual’s ‘right to refuse or withdraw from any part of their treatment plan without it affecting future care.’"

Since NICE, the Trust has advised the government on its 2013 statutory education guideline for LEAs, and our recommendations were incorporated into the Guideline. A 25 minute webinar for parents, schools and LEAs, showing how the new guideline helps children with ME, is here:
http://www.nisai.com/Articles/350386/Ni ... by_on.aspx

Jane Colby, former Head Teacher and
Executive Director of The Young ME Sufferers Trust