A peer reviewed academic article by Jane Colby, Executive Director of the Tymes Trust
There is no cure for ME (Myalgic Encephalomyelitis). In its absence, management regimes are prescribed, typically based on cognitive behavioural therapy (CBT) and graded exercise therapy (GET). In the case of children this may involve the application of Child Protection powers to enforce treatment. NICE confirms that patients may withdraw from treatment without effects on future care, but parents who decline, or withdraw children from, management regimes, which may have worsened their illness, can find themselves facing investigation for child abuse or neglect, or have their child forcibly confined to a psychiatric unit. Tymes Trust has advised 121 families facing suspicion/investigation. To date, none of these families has been found to be at fault. Subsuming ME under the heterogeneous term Chronic Fatigue Syndrome (CFS) has confounded research and treatment and led to disbelief over its severity and chronicity. As evidence points to persistent viral infection, recommendations have been made to separate ME from CFS. International consensus criteria for ME emphasise post-exertional deterioration as distinct from fatigue. If the child with ME deteriorates under management regimes, re-diagnosis with a psychiatric condition can mask treatment failure and lead to blame attaching to the parent. A more constructive redeployment of resources away from Child Protection investigations into appropriate practical support for these seriously unwell children, should be developed.
Jane has worked with the All Party Parliamentary Group on ME and the All Party Parliamentary Group on Abuse Investigations in regard to the issues raised in this paper. Jane is a former Head teacher. She was co-author of the largest epidemiological study of ME to date, and prepared the questionnaire for the BBC Panorama ME documentary. She was a member of the Chief Medical Officer’s Working Group on CFS/ME. A former severe ME sufferer, Jane is also the Executive Director of Tymes Trust.
The full article can be downloaded as a PDF file from –
The Tymes Trust - http://www.tymestrust.org/