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Solve ME/CFS Initiative Research Programs

To make Myalgic Encephalomyelitis understood, diagnosable and treatable by supporting the research work of Solve ME/CFS Initiative.

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What Is Myalgic Encephalomyelitis?

Myalgic Encephalomyelitis (ME), commonly referred to as Chronic Fatigue Syndrome (CFS) is the worst disease you’ve never heard of. It is a complex and debilitating chronic disease with a serious impact on one’s health and quality of life. Approximately 25% of people who are diagnosed with ME/CFS are disabled by the disease. The estimated annual cost in the United States alone due to loss of productivity is between $9 billion and $37 billion (CDC Grand Rounds: Chronic Fatigue Syndrome Advancing Research and Clinical Education Elizabeth R. Unger, PhD, MD1; Jin-Mann Sally Lin, PhD1; Dana J. Brimmer PhD1; Charles W. Lapp, MD2; Anthony L. Komaroff, MD3; Avindra Nath, MD4; Susan Laird, MSN5; John Iskander, MD6). Although research has shown that ME/CFS is roughly four times more likely to occur in women than men, ME/CFS strikes people from every age, racial, ethnic, and socioeconomic group.

ME/CFS is only beginning to be recognized by medical communities in the United States and Western Europe. In the United States, the Federal government spends roughly $2.00 per patient on research. In other countries, however, individuals with ME/CFS are left to suffer in silence with no support. Still, even in the United States fewer than 20% of ME/CFS patients have been properly diagnosed. Diagnosing ME/CFS is a challenging process because there is not one diagnostic test or biomarker that is conclusive. Given the poor understanding of etiology, the lack of pharmaceutical investment, the lack of FDA-approved drugs, and that no cure for ME/CFS has been identified, treatment is directed at relieving symptoms. Sometimes patients hide their symptoms to others, which makes it difficult for family members, friends, and the public to understand the challenges of the condition. Many patients are simply not believed to be sick, despite debilitating symptoms that include extreme exhaustion, non-restorative sleep, brain fog/cognitive impairment, joint pain, inflamed lymph nodes, persistent sore throat, severe headache, and neurological abnormalities, among other symptoms, including complete organ shut down. Approximately 1 – 2.4 million people in the United States and 17 million people worldwide have ME/CFS. 



Explain your idea

The comprehensive nature of our research program is underscored by two core components: 1) We initiate and support high-quality research across every phase of the discovery process 2) We work to improve the overall ME/CFS ecosystem through the following key functions: DEBUNKING fallacies and misinformation about ME/CFS CREATING opportunities for young investigators FACILITATING patients’ participation in research ADVOCATING for effective policies and federal actions PUBLICIZING current scientific and medical developments PROMOTING cross-pollination of ideas through think tanks This non-linear process can be broken down into six phases: 1. Capacity building: Includes the development of human capital, infrastructure, tools, and resources to drive ME/CFS research forward 2. Target discovery: Encompasses the identification of reliable biomarkers, indicators, or other biological culprits that can be therapeutically targeted or manipulated 3. Repurposing opportunities: The retooling of existing FDA-approved drugs for other uses when possible that may help bypass several time-consuming steps toward drug approval 4. Preclinical research: Denotes research in the basic sciences using biological specimens (e.g., patient samples, cultured cells, tissues) or model systems (e.g., animal models) to understand the mechanisms and signaling pathways that will have applications in clinical trials; this step is fundamental for targeted therapy design 5. Clinical research: Involves experimentation with human participants done in a clinical or laboratory setting; this includes clinical trials, natural history studies, clinical effectiveness, and outcome research as well as the development and improvement of clinical criteria updates 6. Therapeutic discovery: This is the goal and includes the identification and development of treatments and, eventually, a cure. SMCI acts as an agent for change and unity in the ME/CFS community by addressing gaps and focusing our efforts in advocating for policies and federal action; we meet with government officials and science leaders because only a strong coalition of these two groups will effect much-needed change at the federal level; we author dozens of opinion and technical pieces addressing current ME/CFS affairs across the Science, Research, and Policy landscapes; and we debunk fallacies and misinformation through our No Spin Zone. At SMCI we create opportunity for young investigators through our MeetME Travel Awards, which enable junior scientists and underrepresented groups to attend ME/CFS conferences and build scientific networks by paying their travel expenses for ME/CFS-focused meetings and conferences around the world. We keep our community informed using webinars and email blogs that deliver scientific research and current information. Also, we participate in domestic and international conferences and convene some of the top minds in ME/CFS to collaborate on the key issues facing ME/CFS.

Who Benefits?

Beneficiaries of SMCI’s research are the estimated 17 million people worldwide who have ME/CFS.

How is your idea unique?

SMCI seeks to engage the entire ME/CFS community in research, works to accelerate the discovery of safe and effective treatments, and strives for an aggressive expansion of funding for research that will lead to a cure. SMCI has also established a new state-of-the-art national patient registry, which will enable clinical trials, further understanding of the natural history of the disease, and includes options for data sharing and collaboration among patients, researchers, and other disease organizations. Also, SMCI has a Biobank repository of physical samples from patients to support the work of qualified researchers and accelerate the discovery process.

Idea Proposal Stage

  • Full-scale roll-out: I have completed a pilot and analyzed the impact of that pilot on the users I am trying to reach with my idea. I am ready to expand the pilot significantly.

Tell us more about you

The Solve ME/CFS Initiative (SMCI) is the oldest and largest research organization focused on ME/CFS. Since its founding in 1987, SMCI has invested more than $6 million to fund the work of scientists in the field and to conduct its own research studies.

Expertise in sector

  • 7+ years

Organization Filing Status

  • Yes, we are a registered non-profit.

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