Solve ME/CFS Initiative

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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. 

ME/CFS - An acronym that combines myalgic encephalomyelitis with chronic fatigue syndrome. Sometimes they are combined because people have trouble distinguishing one from the other. Sometimes they are combined because people see them as synonyms of each other.

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.

Myalgic encephalomyelitis (ME) - 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.

Myalgic encephalomyelitis (ME) - 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.

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.