Solve ME/CFS Initiative
The Solve ME/CFS Initiative (SMCI) is a not-for-profit organization in the United States started in 1987 by Marc Iverson, aimed at ending ME/CFS. Originally the organization was named the CFIDS Association of America, but changed its name in 2014. Presently, Carol Head serves as President and CEO and Dr. Zaher Nahle serves as Chief Scientific Officer (CSO) and Vice President for Research. Chair of the Board of Directors is Victoria (Vicki) J. Boies, PsyD.
History[edit | edit source]
Kim McCleary served as the CEO of Chronic Fatigue and Immune Dysfunction Syndrome Association of America or CFIDS Association of America for 22 years, from 1991 until June 2013. During that time the Association was instrumental in developing a policy ruling for the Social Security Administration that recognized Chronic Fatigue Syndrome (CFS) as a disabling condition; fought to create Chronic Fatigue Syndrome Advisory Committee (CFSAC), the ME/CFS advisory committee to the Health and Human Services Department; exposed the Centers for Disease Control & Prevention (CDC) misappropriation of millions of dollars designated by Congress for CFS research; and led fundraising and public awareness campaigns. At this time, the organization has decided to focus on advancing research, both in the private and governmental sectors.
Aims[edit | edit source]
The organization's aim is: a world free of ME/CFS.
Research Advisory Council[edit | edit source]
The Research Advisory Council is a volunteer advisory group made up of ME/CFS experts in medicine and research that guide the research efforts of the Solve ME/CFS Initiative. Members in 2017 are: Anthony Komaroff, MD; Susan Levine, MD; Jose Montoya, MD; Sheila Stewart, PhD; Natalie Block, MD; Daan Archer, MBA; Tarek Absi, MD; Peter Rowe, MD; Michel Silvestri, PhD; Zeina Nahleh, MD; Lucinda Bateman, MD; Andreas Kogelnik, MD, PhD; John Nicols, Eng., MBA, and Morgan Fairchild, Advocate.
Biobank[edit | edit source]
Funding[edit | edit source]
100% of their funding comes from individuals — patients and their loved ones. The Solve ME/CFS Initiative has a program called Team Resolve, which is a grassroots community fundraising program for those interested in fundraising on a smaller local level using innovative ideas such as sponsoring a pancake breakfast, hosting a party, or turning a hobby into a way to fundraise.
Solve ME/CFS Initiative received four out of four stars and 90.23 out of 100 points from Charity Navigator, America's largest independent charity evaluator.
Public awareness campaign[edit | edit source]
Newsletters[edit | edit source]
The Solve ME/CFS Chronicle newsletter is released several times at year. Archives for past issues are available online.
- Summer 2016 Headlines include: "The Solve ME/CFS Initiative Research Plan;" "Research Study Conclusions in Brief;" "The Federal Government and ME/CFS: The Year in Review;" "SMCI Volunteers and the Silver Screen: Making a Difference;" and "Patient Voices"
- Spring 2016 Headlines include: "Solve ME/CFS Initiative Launches New In-House Research Program;" "NIH Provides Details on New Intramural Study;" "Solve ME/CFS Initiative Announces New Research Advisory Council;" "Solve ME/CFS Initiative Announces New Research Grants Program;" "Solve ME/CFS Initiative Meets with NIH, Congress;" "Solve ME/CFS Initiative Updates Its Report Card on Revised CFSAC Responses;" "Dr. Zaher Nahle Serves on CDC Workgroup;" and "Carol Head Joins CFSAC Subcommittee on Centers of Excellence"
- Winter 2015 Headlines include: "Significant Breakthrough for ME/CFS at the NIH;" "Overcoming the Challenges of a Complex Disease;" "Updates on Solve ME/CFS Initiative-Funded Research;" and "Humans of ME/CFS: We Want to Hear Your Story."
Webinars online[edit | edit source]
- Apr 20, 2017 Webinar with Susan Levine, MD, "A 360° Approach to Solve ME/CFS"
- Mar 15, 2017 Webinar with Peter Rowe, MD, "A Clinical Approach to ME/CFS in Adolescent and Young Adults: A Practical Primer"
- Mar 2, 2017 Webinar with Emily Taylor, "6 Ways to Maximize Your Congressional Advocacy Impact"
- Oct 20, 2016 Webinar with Christopher Armstrong, on recent metabolomics studies
- Sept 8, 2016 Webinar with Elizabeth Unger, PhD, MD, "Update on CDC's Public Health Approach To ME/CFS"
- Sept 1, 2016 Webinar with Maureen Hanson, Ph.D., "Current and Previous Research on ME/CFS at Cornell University"
- May 19, 2016 Webinar with Jarred Younger, Ph.D. "Chronic Fatigue Syndrome and Myalgic Encephalomyelitis: Can we find answers in the brain?"
- April 21, 2016 Webinar with Avindra Nath, MD, "Post Infectious Myalgic Encephalomyelopathy/Chronic Fatigue Syndrome"
- March 17, 2016 Susan Levine, MD, "The Future of ME CFS"
- Nov 19, 2015 Dane B. Cook, PhD, "Deciphering Post-Exertion Malaise: The Intersection of Biology and Behavior"
- Oct 15, 2015 Dr. Alan Light "New Developments in ME/CFS Research"
- Aug 3, 2015 Dr. Zaher Nahle, Vice President of Research and Scientific Programs at the Solve ME/CFS Initiative
- Jul 16, 2015 Peter Rowe, MD, "Inducing Post-Exertional Malaise in ME/CFS: A Look at the Research Evidence"
- Dec 16, 2014 Carol Head and Suzanne Vernon, PhD, "ME/CFS Research Year-End Summary"
- Nov 14, 2014 Lucinda Bateman, MD, "Can ME CFS and Fibromyalgia Research Help You Sleep?"
- Oct 23, 2014 Peter Rowe, MD, "Neuromuscular Strain in ME/CFS"
- Oct 1, 2014 Derya Unutmaz, MD, "Decoding the Human Immune Response"
- Sept 18,2014 Dane B. Cook, PhD, "Deciphering Post-Exertional Malaise"
- Aug 21, 2014 Patrick O. McGowan, PhD, "Epigenetics of ME/CFS"
- Jul 31, 2014 Suzanne Vernon, PhD, "Research Institute Without Walls: Progress & Promise"
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Contact information[edit | edit source]
- Solve ME/CFS Initiative
- 5455 Wilshire Blvd, Ste 806
- Los Angeles, CA 90036-0007
- Phone: 704-364-0016
Online presence[edit | edit source]
Learn more[edit | edit source]
- Wikipedia - Solve ME/CFS Initiative
- 2016, Introducing the seed grant Ramsay award program
- 2016, SMCI engaged with NIH officials to further appropriate MECFS funding
See also[edit | edit source]
References[edit | edit source]