Open Letter to Standards Committee: Concerns Over Cross Party Group on ME

Summary: This document, dated September 25, 2012, addresses concerns regarding the Cross Party Group (CPG) on Myalgic Encephalomyelitis (ME) in Scotland. Key points include:

• Vote on Remit: A vote held on September 19, 2012, overwhelmingly supported focusing the CPG on neurological ME. However, within 24 hours, an email circulated proposing a second vote, raising questions about democratic integrity.
• Patient Advocacy: The letter emphasizes the patient community’s desire for the CPG to remain focused on ME as a distinct neurological disorder, aligning with clinical opinions from experts.
• Criticism of Leadership: The authors express disappointment in the leadership of Mary Fee, citing a lack of confidence in her ability to represent the interests of ME patients effectively.
• Call for Transparency: The letter urges MSPs to clarify their stance and abandon plans for a second vote, which undermines the initial decision and patient advocacy efforts.
• Signatories: The letter is signed by representatives from various ME advocacy groups and CPG members, highlighting widespread support for the original vote’s outcome.

The document underscores the challenges in achieving recognition and appropriate representation for ME as a distinct condition.