Brief Report on APPG on ME Meeting 2012

The All-Party Parliamentary Group (APPG) on ME convened in 2012 to address ongoing challenges facing ME/CFS patients, including welfare reforms, NHS services, and research advancements. Here’s an overview of the key discussions:

1. Welfare Reform:
   • Updates highlighted the continued rollout of Personal Independence Payment (PIP) replacing Disability Living Allowance (DLA).
   • Concerns persisted around the Work Capability Assessment (WCA), with issues related to fluctuating conditions and fair evaluation processes.
2. Research Progress:
   • The establishment of the ME Biobank was celebrated, providing valuable resources for future studies.
   • Discussions on Rituximab trials for ME/CFS patients acknowledged potential risks alongside the promising results.
   • Challenges in retroviral research, such as setbacks in XMRV studies, were noted.
3. NHS Services:
   • Ongoing disparities in service quality and availability across the UK were addressed.
   • Calls for improved recognition and treatment for ME/CFS patients, especially the severely affected, were emphasized.
4. Child Protection Concerns:
   • Continuing issues with families of children with ME being investigated for abuse were discussed, alongside efforts to engage the Royal College of Paediatrics & Child Health for resolutions.

The APPG on ME reiterated its commitment to advocating for better policies, research initiatives, and healthcare services, emphasizing collaboration to improve patient outcomes.