- Last Updated: 08 December 2015 08 December 2015
Save the Date! May 2
Our spring event will be held on Saturday, May 2, 1 p.m. at Newton-Wellesley Hospital, Newton, MA. Speakers are Dr. Suzanne Vernon, Scientific Director, and Carol Head, CEO. Please plan to join us for this review of cutting edge ME/CFS research, conducted using a collaborative process by researchers in different fields.You may have heard about the Research Institute Without Walls, and the SolveCFS BioBank. Come learn more and find out how you can participate in research. Watch for our April newsletter for more details.
About the Solve ME/CFS Initiative research program. Since the organization was founded in 1987, the Association has invested more than $31 million in initiatives to bring an end to the pain, disability and suffering caused by ME/CFS.
The Solve ME/CFS Initiative (SMCI) has directly funded or leveraged more than $12 million in ME/CFS research studies in the past 5 years alone, all aimed at accelerating progress toward accurate diagnosis and effective treatment of ME/CFS. SMCI is the largest source of ME/CFS research funding aside from the federal government. For more information about SMCI’s research programs, see SMCI Fact Sheet
March 20 - Final call for participating in IOM survey
After reading the report (or the Report Brief and supporting materials), tell us what you think. The survey is open until midnight EDT on Friday, March 20. Afterwards, the summarized results of the survey will be provided to the Chronic Fatigue Syndrome Advisory Committee (CFSAC) as valuable stakeholder input.
Please note that this is not a multiple-choice survey. There are four open-ended "content" questions plus a general comment field. If you have read and thought about the report we would love to hear from you. Responses from people outside the U.S. are also welcome. Please respond by March 20, 2015.
- What are the positive things in the Report that we can use to move forward?
- What questions do you have?
- What goals would you like to see accomplished with regard to this illness in the next 3 - 5 years? Are these goals supported by the Report?
- What parts of the Report are problematic for you?
- Do you have other comments you would like to share?
March 25 - SMCI Briefing in Washington – webcast participation
On March 25, the Solve ME/CFS Initiative will host a briefing on the Institute of Medicine report in Washington, D.C. The briefing, which will include media, congressional leaders and executive branch decision-makers,is intended to further the IOM report momentum and turn the report into action, particularly by urging additional federal research funding.
The briefing will feature three speakers:
- Dr. Ellen Wright Clayton, Chair of the IOM Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Dysautonomia: Postural Orthostatic Tachycardia Syndrome (POTS)
- Morgan Fairchild, Actress, Activist and Patient
- Carol Head, Solve ME/CFS Initiative President/CEO
You are invited to join via webcast. Register for the briefing event here:
For more information
P2P final report to be released April 14
The Final Report of the 2014 Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome will be posted April 14. We hope it will incorporate the many suggestions made by patients, advocates, and ME/CFS organizations including the Chronic Fatigue Syndrome Advisory Committee. Watch this page for the report.