Government Advocacy

Wanted: Patient Participation in Quality of ME/CFS Medical Care Survey

January 23, 2015

The Chronic Fatigue Syndrome Advisory Committee’s Centers of Excellence Working Group invites the participation of all ME/CFS patients, 18 years of age and older, worldwide, but particularly within the United States, to participate in an online survey the purpose of which is to determine the […]

Public Release of the IOM ME/CFS Study February 10

January 23, 2015

The IOM’s Committee on the Diagnostic Criteria for ME/CFS will hold a public release event for its consensus report on February 10th, 2015 from 11:00 am-12:00 pm EST. Participants may attend live or view via webstream. LEARN MORE and REGISTER…

The P2P Report – CFSAC Drafts Substantive, Expert Response

January 15, 2015

On 1/13/2015, the CFSAC met and finalized its response and feedback to the P2P draft report. SMCI participated in the process, with Carol Head, president and CEO, serving on the CFSAC working group. SMCI will endorse the CFSAC response in it’s feedback to the P2P panel concerning the report. LEARN MORE…

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…