On 2nd March 2005, the Cross Party Group on ME (XPG) at the Scottish Parliament hosted a reception for MSPs, members and scientists, designed to bring together a range of people concerned about the problem of ME/CFS, and to raise awareness of the issues among parliamentarians.
The meeting was opened by Alex Fergusson, Chairman of the XPG, who described how the principal aims of the group are to help MSPs to address and represent the needs of ME sufferers to the Scottish Parliament and Executive, and to provide MSPs with sources of information and expertise on issues affecting ME sufferers, their families and carers.
In the four years since its creation, the XPG has campaigned successfully for a Short Life Action Group on ME/CFS, the report of which was published in 2002 (available here in pdf format). It has also produced research briefings and is currently supporting a petition to improve patient care.
Before the reception proper, three speakers gave short presentations on areas of special concern in ME/CFS. Linda McLean described her experiences as a carer of a young person with ME, Dr Gregor Purdie presented the GP perspective and the need for centres of excellence, and Dr Vance Spence described issues surrounding biomedical research into the illness. The presentations were followed by an enjoyable question and answer session, after which the attendees were free to mingle, mix and talk over wine and cheese.
The Briefing Paper for MSPs written by Linda Dunn — Myalgic Encephalomyelitis (ME): The impact on sufferers: Is health policy in Scotland on the right path? — which “captures not only the essence of ME as an illness, but also outlines the position in Scotland and identifies urgent action required
” is available here (pdf 213 KB).
A version of the presentation by Dr Vance Spence, Chairman of ME Research UK, can be read here.
