General UK Background

A report on ME/CFS (2002) considered how the NHS would provide care for those affected. The chronic illness has become increasingly recognised although remains misunderstood. According to MEA 240,000 people in the UK are affected. The NHS suggest between 0.2 and 0.4% are affected, although clusters exist. Subsequently there have been studies under the banner of the ME Research Observatory, further work funded by MERUK and work by international researchers.

Many sufferers are unable to work. ME is recognised as a disabling condition under the DDA. Tensions remain regarding government policy, research paradigms adopted and the NICE guidelines.

Associated support groups for ME are a key factor in helping patients cope with their chronic condition, a physical neurological illness, and manage it so enabling a contribution to a productive workforce. Groups help people to deal with difficulties, which cannot all be managed through the NHS. Sufferers’ well being is affected through having a long-term disability and not all guidance required is health related. Networks can be helpful in encouraging a sense of belonging, particularly where a condition in itself can be very isolating.

Last updated Linda Danielis July 8th 09