Brief Report on APPG on ME Meeting 2011

The All-Party Parliamentary Group (APPG) on ME convened on October 25, 2011, to discuss key issues affecting ME/CFS patients, including welfare reforms, research updates, and NHS services. Below is a summary of the main points:

1. Welfare Reform:
   • Updates on the Welfare Reform Bill included changes to benefits, such as the introduction of Universal Credit and the replacement of Disability Living Allowance (DLA) with Personal Independence Payment (PIP).
   • Concerns were raised about the Work Capability Assessment (WCA) process, particularly for individuals with fluctuating medical conditions like ME/CFS.
2. Research Updates:
   • Progress on the ME Biobank was highlighted, with funding secured from various organizations.
   • Promising results from a Norwegian study using Rituximab were discussed, though caution was advised due to potential side effects.
   • XMRV research faced setbacks, with no conclusive findings from recent studies.
3. NHS Services:
   • Concerns were raised about the reduction of specialist ME services, including the closure of a key unit in Romford.
   • Disparities in NHS service quality and availability across the UK were noted, with calls for improved access and support for ME/CFS patients.
4. Child Protection Issues:
   • Ongoing issues with families of children with ME being investigated for abuse without evidence were discussed. A meeting with the Royal College of Paediatrics & Child Health was proposed to address these concerns.

The APPG on ME continues to advocate for better policies, research, and healthcare services for ME/CFS patients, emphasizing the need for collaboration and awareness.