Summary of Brief Reports on Two APPG Meetings on ME/CFS (February and May 2007)

This document provides summaries of two meetings conducted by the All-Party Parliamentary Group (APPG) on ME/CFS in 2007. It highlights key discussions, presentations, and outcomes related to ME/CFS services and policy in the UK.

Meeting Held on 22nd February 2007:

• Attended by representatives from ME/CFS charities, individuals, and MPs, alongside guest speakers from NICE.
• The meeting focused on the NICE draft guideline for ME/CFS, which had stirred significant discontent among patient groups due to its emphasis on CBT and GET as primary treatments.
• During discussions, NICE representatives acknowledged the need to reconsider their evidence framework and patient feedback but indicated no plans for further consultation before finalizing the guideline.
• Concerns regarding the alignment of NICE guidelines with the Department of Health’s classification of ME/CFS as a neurological condition were also raised.

Meeting Held on 17th May 2007:

• Fewer attendees, including charity representatives and a guest speaker from NHS Plus.
• The session centered on the “Occupational Aspects of the Management of CFS” guideline, which aimed to support patients in returning to work. Criticisms of the guideline led to discussions about potential amendments.
• Additional issues discussed included the disbanding of Dr Gibson’s group, suspended parliamentary motions on ME, and funding challenges for NHS clinics in East Anglia.

Concluding Observations: The document notes increasing discussions about ME/CFS in UK institutions and highlights ongoing challenges, such as limited impact of advocacy efforts, unresolved concerns with NICE guidelines, and apprehension about upcoming DWP guidelines.

This summary outlines the APPG’s efforts to address patient concerns and advocate for improved services and policies for those affected by ME/CFS.