The End of the Cross Party Group on ME: A Reflection by Tymes Trust

Summary: This document reflects on the closure of the Cross Party Group (CPG) on ME in the Scottish Parliament, highlighting key events and controversies. Key points include:

• Voting and Controversy: The CPG convenor initiated a vote on establishing a specialist ME clinic versus ME/CFS fatigue clinics. Tymes Trust was tasked with preparing voting options, which were approved by the convenor. The vote favored a specialist ME clinic, but the decision was not implemented, leading to disappointment among ME advocates.
• Split in Opinion: A divide existed within the working group regarding the focus of a proposed center of excellence. Some advocated for a clinic dedicated solely to ME, emphasizing its neurological nature, while others supported broader ME/CFS fatigue clinics.
• Expert Input: Consultant neurologist Dr. Abhijit Chaudhuri, a proponent of separating ME from CFS, was unable to attend a critical meeting. His absence left the group in deadlock, prompting the convenor to escalate the matter to the full CPG.
• Democratic Principles: The document criticizes the failure to honor the democratic vote, emphasizing the need for accurate representation of ME as a distinct condition to advance research and treatment.
• Advocacy for Clarity: The report references the “International Consensus Primer for Medical Practitioners 2012,” which highlights the confusion caused by conflating ME with CFS and calls for clear distinctions to improve research and care.

The document underscores the challenges faced by ME advocates in achieving recognition and appropriate care for the condition.