ME in Scotland: Holyrood Update and Cross Party Group Developments

Summary: This document provides an overview of the final meeting of the Cross Party Group (CPG) on Myalgic Encephalomyelitis (ME) in the Scottish Parliament, highlighting key events and challenges. Key points include:

• Final Meeting and Vote:
  • On September 19, 2012, the CPG voted on whether to focus solely on ME (as defined by WHO ICD10 G93.3) or include a spectrum of fatiguing conditions under ME-CFS.
  • The vote favored ME, but the convener, Mary Fee MP, attempted to hold another vote, leading to frustration among members.
• Advocacy for ME:
  • Members advocating for ME as a distinct neurological disease emphasized the need for a Centre of Excellence dedicated to ME.
  • The group faced resistance from MSPs and some national ME charities, which abstained from the vote.
• Challenges in GP Education:
  • Feedback revealed confusion in medical curricula, where ME was often conflated with chronic fatigue syndrome, viewed as a somatic syndrome, causing harm to ME patients.
• Resignation of Leadership:
  • Mary Fee and vice conveners resigned following complaints to the Standards Committee about the handling of the vote and lack of adherence to democratic principles.
• Future Efforts:
  • Invest in ME decided to distribute GP information packs to improve understanding and care for ME patients in Scotland.

The document underscores the challenges in advocating for ME as a distinct condition and the need for improved education and healthcare services.