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. Sadie Whittaker is the Chief Scientific Officer. 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 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
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.

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

https://www.youtube.com/watch?v=cF2OuYFDriY

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

Webinars online
2014 Series
 * Jul 31, 2014 Suzanne Vernon, PhD, "Research Institute Without Walls: Progress & Promise"
 * Aug 21, 2014 Patrick O. McGowan, PhD, "Epigenetics of ME/CFS"
 * Sept 18,2014 Dane B. Cook, PhD, "Deciphering Post-Exertional Malaise"
 * Oct 1, 2014 Derya Unutmaz, MD, "Decoding the Human Immune Response"
 * Oct 23, 2014 Peter Rowe, MD, "Neuromuscular Strain in ME/CFS"
 * Nov 14, 2014 Lucinda Bateman, MD, "Can ME CFS and Fibromyalgia Research Help You Sleep?"
 * Dec 16, 2014 Carol Head and Suzanne Vernon, PhD, "ME/CFS Research Year-End Summary"

2015 Series
 * Apr 17, 2015 Lucinda Bateman, MD, "Will SEID Diagnostic Criteria Improve Diagnosis and Treatment?"
 * Jun 18, 2015 Lily Chu, MD, MS, "Post-Exertional Malaise: History, Characteristics, Evidence"
 * Written questions and answers to Dr. Chu's webinar


 * 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


 * Aug 3, 2015 Dr. Zaher Nahle, Vice President of Research and Scientific Programs at the Solve ME/CFS Initiative
 * Oct 15, 2015 Dr. Alan Light "New Developments in ME/CFS Research"
 * Nov 19, 2015 Dane B. Cook, PhD, "Deciphering Post-Exertion Malaise: The Intersection of Biology and Behavior"

2016 Series
 * 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


 * April 21, 2016 Webinar with Avindra Nath, MD, "Post Infectious Myalgic Encephalomyelopathy/Chronic Fatigue Syndrome"
 * May 19, 2016 Webinar with Jarred Younger, Ph.D., "Chronic Fatigue Syndrome and Myalgic Encephalomyelitis: Can we find answers in the brain?"
 * Sept 1, 2016 Webinar with Maureen Hanson, Ph.D., "Current and Previous Research on ME/CFS at Cornell University"
 * Sept 8, 2016 Webinar with Elizabeth Unger, PhD, MD, "Update on CDC's Public Health Approach To ME/CFS"
 * Oct 20, 2016 Webinar with Christopher Armstrong, on recent metabolomics studies
 * Nov 10, 2016 Webinar with Dr. Anthony Komaroff, MD, "Hot Areas in ME/CFS Research"
 * Written questions and answers to Dr. Komaroff's webinar

2017 Series
 * Mar 2, 2017 Webinar with Emily Taylor, "6 Ways to Maximize Your Congressional Advocacy Impact"


 * Mar 15, 2017 Webinar with Peter Rowe, MD, "A Clinical Approach to ME/CFS in Adolescent and Young Adults: A Practical Primer"
 * Apr 20, 2017 Webinar with Susan Levine, MD, "A 360° Approach to Solve ME/CFS"

2018 Series

 * May 24, 2018, Webinar on "Update: Hot Areas in ME/CFS Research" presented by Dr. Anthony Komaroff
 * Written questions and answers to webinar


 * Jul 19, 2018, "Crossroad of the immune response and the microbiome: Impact on ME/CFS" by Derya Unutmaz, MD
 * Aug 30, 2018, "Back to School Part 1: 504 Education Plans and Medical Accommodations for ME/CFS in Public Schools" by Lisette Duarte, Disability Education Advocate
 * Sept 18, 2018, Webinar on “Appropriately and Accurately Assessing Symptoms in Patients with ME,” given by Dr. Leonard Jason
 * Written questions and answers to webinar


 * Oct 18, 2018, Webinar on "Back to School Part 2: IEPs for students with ME/CFS in Public Schools" by Lisette Duarte, Disability Education Advocate
 * Dec 6, 2018, "You + M.E.: A community resource, built by the community" by Sadie Whittaker, PhD
 * Dec 13, 2018, "ME/CFS Involves Brain Inflammation: Results from a Ramsay Pilot Study" given by Dr. Jarred Younger

Webinars newsletters with links to download slides

 * 2014 Webinar Series
 * 2015 Webinar Series
 * 2016-2018 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
 * LinkedIn

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