The Solve ME/CFS Initiative is one of 12 organizations that have signed a letter asking the heads of the Centers for Disease Control (CDC) and the Agency for Healthcare Research and Quality (AHRQ) to examine the issues raised by journalist David Tuller’s analysis of the U.K.’s £5 million PACE trial for ME/CFS. Read More…
A Job for a Lone Congress Member: Speak Up for a Forgotten Disease
In a recent blog post that originally appeared on TheHill.com, Llewellyn King offers a job description for a Congress member willing to take up the cause of advocating for more ME/CFS research funding. Read More…
Dr. Ledia Martinez Assumes CFSAC Designated Federal Officer Post
Dr. Ledia Martinez has been appointed as the designated federal officer (DFO) of the Chronic Fatigue System Advisory Committee, effective immediately. Dr. Martinez replaces Barbara James, who is retiring. Read More…
Solve ME/CFS Initiative Hosts IOM Briefing in D.C.
On March 25, the Solve ME/CFS Initiative hosted a briefing in Washington, D.C., on the IOM report on ME/CFS [SEID]. The briefing gathered congressional representatives, reporters, government officials and researchers while more than 300 viewed the event through a live webcast. The landmark report was reviewed and Carol Head made a strong and compelling call for more federal research funding. Read More…
Guest Blog: Dr. Lucinda Bateman on the Discussion Surrounding the IOM Report
Lucinda Bateman, MD, specializes in the diagnosis and management of unexplained chronic fatigue, ME/CFS and fibromyalgia. Having served on the IOM committee that produced the recent report, Beyond ME/CFS: Redefining an Illness, she brings an in-depth, well-informed opinion to the conversation surrounding the IOM report on ME/CFS, the new diagnostic criteria and the proposed name, Systemic Exertion Intolerance Disease (SEID). READ MORE…
IOM Report Released – Recommends New Diagnostic Criteria, Calls for More Research, and Proposes New Disease Name
IOM Report Released – Recommends New Diagnostic Criteria, Calls for More Research, and Proposes New Disease Name. The report underscores the profound impact that ME/CFS has on the millions who suffer from it worldwide (est. 17 million) and the importance of getting people diagnosed; committee calls for more research funding. READ MORE…
The P2P Report – CFSAC Drafts Substantive, Expert Response
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
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
CFSAC Charter Up for Renewal
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 and executed. The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides […]
International ME/CFS and Fibromyalgia Awareness Day May 12
On Monday, May 12th, patients and their loved ones from across the globe will come together to help spread awareness of and compassion for ME/CFS on International ME/CFS and Fibromyalgia Awareness Day…