Government Advocacy

P2P Draft Report Set to be Published, 30 days for Feedback

December 18, 2014

On December 9 & 10, the Pathway to Prevention Workshop for “Advancing the Research on ME/CFS” was held. The draft report is scheduled to be posted on December 18, 2014 with a 30 day comment period. The Solve ME/CFS Initiative will work with members of its Research Advisory Council and other advisers to issue a response to the report. Access the workshop recordings a READ MORE

Two Important Federal Meetings Just 4 Days Apart

November 20, 2014

With only 4 days in between them, December offers two very important meetings to the ME/CFS community. On December 3-4, the CFSAC third and final meeting of 2014; on December 9-10, the Pathway to Prevention Workshop for Advancing Treatment in ME/CFS will occur. LEARN MORE…

P2P Draft Evidence Review

October 20, 2014

The Pathway to Prevention draft evidence review has been released. Can a process that seems inappropriate for ME/CFS help inform a path forward? SMCI has utilized the collective brainpower of our Research Advisory Council, led by our scientific director, Suzanne D Vernon, PhD, to perform a careful review and response to the Evidence-Based Practice Centers’ draft evidence-based review for ME/CFS. READ MORE…

P2P Releases Systematic Evidence Review

October 1, 2014

On Sept. 22nd, the Association for Health Research and Quality (AHRQ) released the draft systematic evidence review on the Diagnosis and Treatment of ME/CFS for the P2P workshop. The Solve ME/CFS Initiative is in the process of reviewing the draft report more thoroughly with members of its Research Advisory Council in order to provide the most informed comments prior to the deadline…

P2P Workshop – Registration Now Open

September 3, 2014

Registration is now open for the Pathways to Prevention workshop for Advancing the Research on ME/CFS. Interested individuals may register to attend live or participate via webcast. It is our hope that many stakeholders will participate in this process in order to ensure the patients have a strong presence and a voice. Read more…

CFSAC Charter Up for Renewal

August 21, 2014

The Solve ME/CFS Initiative is involved in advocacy efforts aimed at improving the research landscape for the early detection, objective diagnosis and effective treatment of ME/CFS.  As part of this effort, we work to validate the burden of illness imposed by ME/CFS in agencies where national policy is made […]

CDC Stakeholder Call – Open Invitation

August 18, 2014

CDC announces CFS Patient-Centered Outreach and Communications Activity (PCOCA) Conference Call, open to all on September 9, 3pm EST. The main topic on this call will be “Can ME/CFS and FM Sleep Research Help You Sleep?” presented by Lucinda Bateman MD. LEARN MORE…

Solve ME/CFS Initiative (SMCI) Position on P2P

June 12, 2014

An NIH Pathway to Prevention workshop focusing on ME/CFS is in development. Many in the ME/CFS community have concerns. The Solve ME/CFS Initiative has them as well, specifically about the evidenced-based literature review. SMCI has taken steps to urge the NIH to correct it. Read more about what is underway…

IOM Committee Meeting 3, Diagnostic Criteria for ME/CFS

May 20, 2014

On May 5, 2014, the IOM Committee held another public meeting concerning their work on diagnostic criteria for ME/CFS. Some very compelling testimonies were given. Access the video testimonies and our written report on the patient comments submitted through our online survey…