Government Advocacy

I Thought It Was a Typo…

August 21, 2015

During the course of interviewing for this position, I was reviewing the amount of government spending on ME/CFS. I came across a figure of $5.4 million in one article. I assumed the number must have been a typo. Read More…

Pathways to Prevention

June 24, 2015

Last week’s long-awaited briefing on the National Institute of Health’s Pathways to Prevention (P2P) report on ME/CFS failed miserably at continuing the momentum created earlier this year by the Feb. 10 Institute of Medicine publication on the disease. Read More…

Solve ME/CFS Initiative Reappointed to CFSAC Position

June 11, 2015

The Solve ME/CFS Initiative has been reappointed as one of the liaison organizations for the Chronic Fatigue Syndrome Advisory Committee (CFSAC) for the term May 2015 through May 2017. Read More…

Solve ME/CFS Initiative Hosts IOM Briefing in D.C.

April 2, 2015

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…

SMCI Comment on the Institute of Medicine Report – Part 1 of 5

April 1, 2015

In February, the IOM released its landmark report on ME/CFS [SEID]. In this first of a five-part blog series, Dr. Suzanne D Vernon, SMCI Scientific Director breaks down the report piece by piece, beginning with making the critical distinction between a research case definition and clinical diagnostic criteria. Read More…

Morgan Fairchild Joins SMCI in DC for IOM Report Briefing

March 12, 2015

Morgan Fairchild Joins SMCI in DC for an IOM Report Briefing: On March 25, SMCI will host a briefing on the IOM report in Washington, D.C. The goal is to further the IOM report momentum and turn the report into action, particularly by urging additional federal research funding.
Learn more and register to participate…

Guest Blog: Dr. Lucinda Bateman on the Discussion Surrounding the IOM Report

February 27, 2015

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…

Guest Blog: Changing the Conversation – IOM Report Sparks Re-evaluation of ME/CFS in the Media

February 13, 2015

On Tuesday the IOM released its report, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness”. This landmark report has been highlighted the media this week in more than 300 articles including JAMA, Annals, Science, Nature and a host of accessible lay media including NYT, Al Jazeera America, NPR, CBS Online and HealthDay. In this guest blog, Cort Johnson discusses how the IOM report is changing the conversation. READ MORE…