Jane Colby letter in The Independent

May 18, 2007

The Independent Extra : Education

First Letter

Thursday 17 May

Ten years ago this week The Independent published a feature on ME in children, and there was a media furore. As an Essex headteacher disabled by a polio-related virus, I and consultant microbiologist, Elizabeth Dowsett, had spent five years studying a school roll of over a third of a million children. ME, from which I was suffering, was the biggest cause of long term sickness absence – at 51%, more than double the rate of cancer and leukaemia combined.

ME is a potentially severe and chronic neurological disease, as classified by the World Health Organisation. It is not "chronic fatigue syndrome", a research term disastrously taken into clinical use, lumping together conditions featuring "fatigue". Some children with ME are so weak they are bedridden for years, some need tube-feeding, some suffer paralysis. Fatigue?

It breaks my heart to see sick and disabled children badly served, and my own profession digging itself into a hole. By causing relapse through unsuitable demands, many schools neglect their duty of care, laying themselves open to legal action. I advocate interactive virtual education at home, saving energy for the body to heal. It is already producing GCSE and AS grades above those achieved by healthy children. For those strong enough for school, I advocate the Young ME Sufferers Trustcard, a pass card to ensure their needs are met. And I believe that ME should be notifiable due to its encephalitic features.

Jane Colby

Executive Director, The Young ME Sufferers Trust, Essex

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