Government Advocacy

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…

Guest Post: Dr Larry Baldwin on Post-Exertional Debility in ME/CFS

May 14, 2014

Dr. Larry Baldwin, licensed physician and ME/CFS patient, worked with our Scientific Director, Suzanne D. Vernon, PhD to provide comment on post-exertional debility to the Institute of Medicine Committee on Diagnostic Criteria for ME/CFS. We are happy to provide his compelling and intelligent insights here as a guest blog post…

Social Security Ruling Rescinded and Replaced for ME/CFS

May 8, 2014

The Social Security Administration rescinded their standing ruling on ME/CFS (SSR 99 2-p) and replaced it with SSR 14-1p bringing clarity to the evidence needed to determine eligibility. It is important that you know what is expected should you be applying for social security disability. Read more…