On December 9 & 10, 2014, the NIH Office of Disease Prevention held its Pathway to Prevention Workshop for “Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”. If you were unable to participate in the meeting or watch the live stream, you can access the video archive HERE.
On day 2, our own Dr. Suzanne Vernon spoke to the panel about the importance of the patient perspective and their voice in research in a session they titled “What Outcomes Represent Improvement, Recovery, Prevention, Benefits or Harm?” You can advance to her presentation at time code 3:46:00
Upon the conclusion of the workshop, the panel began writing their report and recommendations. The draft report will be posted on the workshop website on Thursday, December 18, 2014. Comments will be accepted through Friday, January 16, 2015.
The Solve ME/CFS Initiative will work with members of its Research Advisory Council and other advisers to issue a response to the report. Many other individual advocates and organizations will be doing the same, including members of the federal CFS Advisory Committee (CFSAC), upon which we play an active role.
The Solve ME/CFS Initiative will publish its reaction and response to the draft report on this blog as soon as it is available. Any stakeholder is also invited to offer their response to the draft report. Please reference the corresponding line number of the report, and submit your comments via:
Email – firstname.lastname@example.org
Office of Disease Prevention
National Institutes of Health
ATTN: Paris A. Watson
6100 Executive Boulevard, Suite 2B03
Bethesda, MD 20892