Jane Colby FRSA,
Executive director, The Young ME Sufferers Trust, in The Guardian, Thursday 24 February 2011:
Reporting on the PACE trial of treatments for ME/CFS by Professor White and colleagues, Sarah Boseley (Report, 18 February) writes that patient groups "insist it is a physical disease, which probably has a viral cause".
Research co-funded by The Young ME Sufferers Trust and published by Dundee University last year revealed abnormalities in children's blood consistent with persistent viral infection. The trust deals with childhood cases so severe that sufferers cannot swallow and have to be tube-fed. Too weak to walk, they need to be carried and suffer unbearable neuropathic pain.
Professor Malcolm Hooper points out that the World Health Organisation classifies ME as a neurological disorder but that the PACE researchers selected patients on criteria that exclude neurological disorders. They claim that graded exercise therapy (GET) and cognitive behaviour therapy (CBT) promote recovery. However, in the latest study of GET and CBT for people with chronic fatigue syndrome, researchers concluded that the treatment resulted in worse physical function and bodily pain scores (Clinical Rheumatology, 15 January 2011). In the practical experience of the families we help, we found children's symptoms are exacerbated with GET, and a period of extended convalescence is needed to enable their strength to return.
In 2010, we were honoured to receive the Queen's Award for Voluntary Service (the MBE for volunteer groups) and we feel it important that we distance ourselves from comments in the article by the Association of Young People with ME, calling for the PACE trial to be replicated in children. Such misguided views have already caused too much distress to patients and families.
Jane Colby FRSA
Executive director, The Young ME Sufferers Trust