Solve ME/CFS Initiative

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
(Redirected from SMCI)
Jump to: navigation, search
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.[1]Maryellen Gleason serves as Interim CEO after the departure of Carol Head in 2019.[2] Dr. Sadie Whittaker serves as the Chief Scientific Officer.[2] Chair of the Board of Directors is Victoria (Vicki) J. Boies, PsyD.[3]

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 (SSA) 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 (HHS); 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.[4]

Aims[edit | edit source]

The organization's aim is: a world free of ME/CFS.[5]

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]

The Solve ME/CFS Initiative operates the SolveCFS BioBank & Patient Registry.[6] By doing so, an obstacle to researchers finding appropriate patient groups for research is ameliorated.

Funding[edit | edit source]

100% of their funding comes from individuals — patients and their loved ones.[7]

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.[8]

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.[9]

Public awareness campaign[edit | edit source]

Solve ME/CFS Initiative Times Square Public Awareness Ad By SolveCFS (Sep 1, 2016)

Newsletters[edit | edit source]

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

Webinars online[edit | edit source]

2014 Series

2015 Series

Written questions and answers to Dr. Chu's webinar
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

2016 Series

Part 1 - Written questions and answers to Dr. Levine's webinar
Part 2 - Written questions and answers to Dr. Levine's webinar
Written questions and answers to Dr. Komaroff's webinar

2017 Series

2018 Series[edit | edit source]

Written questions and answers to webinar
Written questions and answers to webinar

Webinars newsletters with links to download slides[edit | edit source]

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]

See also[edit | edit source]

References[edit | edit source]

  1. "Same Mission | New Name - Solve ME/CFS Initiative". Solve ME/CFS Initiative. Retrieved Aug 16, 2018. 
  2. 2.02.1 "Solve ME/CFS Initiative Staff". Solve ME/CFS Initiative. Retrieved Oct 10, 2019. 
  3. "Board of Directors - Solve ME/CFS Initiative". Solve ME/CFS Initiative. Retrieved Aug 16, 2018. 
  4. "CFIDS Association Announces New Name – Solve ME/CFS Initiative" (PDF). solvecfs.org. Solve ME/CFS Initiative. May 30, 2014. PDF. 
  5. "About Us - Solve ME/CFS Initiative". Solve ME/CFS Initiative. Retrieved Aug 16, 2018. 
  6. "SolveCFS BioBank - Solve ME/CFS Initiative". Solve ME/CFS Initiative. Retrieved Aug 16, 2018. 
  7. "Funding ME/CFS Research - Solve ME/CFS Initiative". Solve ME/CFS Initiative. Retrieved Aug 16, 2018. 
  8. "Charity Navigator - Rating for Solve ME/CFS Initiative". Charity Navigator. Retrieved Aug 16, 2018. 
  9. "SMCI Receives Robert Wood Johnson Foundation Award". solvecfs.org. Solve ME/CFS Initiative. 

Myalgic encephalomyelitis or chronic fatigue syndrome, often used when both illnesses are considered the same.

Myalgic encephalomyelitis or M.E. has different diagnostic criteria to chronic fatigue syndrome; neurological symptoms are required but fatigue is an optional symptom.<ref name="ICP2011primer">{{Citation

Systematic Exertion Intolerance Disease. A new term with new diagnostic criteria designed to replace chronic fatigue syndrome.<ref name="IOM2015">{{citation| last1 = Institute of Medicine| author-link = National Academy of Medicine| last2 = Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome| title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.