Solve ME/CFS Initiative

Source: Solve ME/CFS Initiative solvecfs.org

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

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. 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

2017 Series

• 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"

2016 Series

• Nov 10, 2016 Webinar with Dr. Anthony Komaroff , MD, "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

2015 Series

• 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"

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?"

2014 Series

• 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"

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

See also

• Carol Head
• Zaher Nahle
• SolveCFS BioBank & Patient Registry
• Dikoma Shungu

Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) - Chronic Fatigue and Immune Dysfunction Syndrome is another term for Chronic Fatigue Syndrome, but one which emphasizes the immunological aspects of the disease. Popular in the 1990s, this term has apparently fallen into disuse.

chronic fatigue (CF) - Persistent and abnormal fatigue is a symptom, not an illness. It may be caused by depression, multiple sclerosis, fibromyalgia, chronic fatigue syndrome or many other illnesses. The term "chronic fatigue" should never be confused with the disease chronic fatigue syndrome.

Chronic Fatigue Syndrome Advisory Committee (CFSAC) - (sometimes pronounced SIF-SACK) A US government advisory council that met twice per year, covering current topics related to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Meetings usually lasted for two days and the results were presented to the Secretary of Health and Human Services (HHS). After 15 years, on September 5, 2018, CFSAC's charter was not renewed by the Department of HHS, effectively dissolving the committee without notice or warning.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

National Institutes of Health (NIH) - A set of biomedical research institutes operated by the U.S. government, under the auspices of the Department of Health and Human Services.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.

muscle strain An injury involving a stretched or torn muscle or tendon (tendons are fibrous cords of tissue that connect muscle to bone).