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 Research Director. Chair of the Board of Directors is Victoria (Vicki) J. Boies, PsyD.

History
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 CFS as a disabling condition; fought to create CFSAC, the ME/CFS advisory committee to the Health and Human Services Department; exposed the CDC's 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 of advancing research, both in the private and governmental sectors.

Aims
The organization's aim is: a world free of ME/CFS.

Research Advisory Council
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
The Solve ME/CFS Initiative operates the SolveCFS BioBank & Patient Registry. By doing so, an obstacle to researchers finding appropriate patient groups for research is ameliorated.

Funding
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.

In April 2016, Solve ME/CFS Initiative announced that it received a award from the Robert Wood Johnson Foundation to boost the SolveCFS BioBank & Patient Registry.

Public awareness campaign

 * Times Square Public Awareness Ad, Sept 1, 2016

Newsletters
The Solve ME/CFS Chronicle newsletter is released several times at year. Archives for past issues are available online.

LATEST ISSUES
 * 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

 * Nov 10, 2016 Webinar with Dr. [[Anthony Komaroff], "Hot Areas in ME/CFS Research"]
 * Written questions and answers to Dr. Komaroff's webinar


 * 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"]
 * Part 1 - Written questions and answers to Dr. Levine's webinar
 * Part 2 - Written questions and answers to Dr. Levine's webinar


 * Nov 19, 2015 [[Dane Cook|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"]
 * Part 1 - Written questions and answers to Dr. Rowe's webinar
 * Part 2 - Written questions and answers to Dr. Rowe's webinar
 * Part 3 - Written questions and answers to Dr. Rowe's webinar
 * Part 4 - Written questions and answers to Dr. Rowe's webinar


 * Jun 18, 2015 [[Lily Chu], MD, MS, "Post-Exertional Malaise: History, Characteristics, Evidence"]
 * Written questions and answers to Dr. Chu's webinar


 * Apr 17, 2015 [[Lucinda Bateman], MD, "Will SEID Diagnostic Criteria Improve Diagnosis and Treatment?"]
 * 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 Cook|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"]

Webinars newsletters with links to download slides

 * 2016 Webinar Series
 * 2015 Webinar Series
 * 2014 Webinar Series

Contact information

 * Solve ME/CFS Initiative
 * 5455 Wilshire Blvd, Ste 806
 * Los Angeles, CA 90036-0007
 * Phone: 704-364-0016

Online presence

 * YouTube
 * Web site
 * Facebook
 * Twitter

Learn more

 * Wikipedia - Solve ME/CFS Initiative
 * 2016, Introducing the seed grant Ramsay award program
 * 2016, SMCI engaged with NIH officials to further appropriate MECFS funding