Solve ME/CFS Initiative

Source: Solve ME/CFS Initiative solvecfs.org

The Solve ME/CFS Initiative (Solve M.E.) 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. Oved Amitay was named President and Chief Executive Officer on June 1, 2020. He was preceded by Carol Head, who served as President and Chief Executive Officer from 2013-2019. Chair of the Board of Directors is John Nicols.

Solve M.E. serves as a catalyst for critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid and other post-infection diseases.

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 (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 and 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 mission is to make ME/CFS, Long Covid and other post-infection diseases widely understood, diagnosable, and treatable. Solve M.E.'s work with the scientific, medical, and pharmaceutical communities, advocacy with government agencies, and alliances with patient groups around the world are laying the foundation for breakthroughs that can improve the lives of millions who suffer from various “long haul” diseases.

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 include: Anthony Komaroff, MD; Susan Levine, MD; Maureen Hanson, Ph.D.; Rochelle Joslyn, Ph.D.; Sheila Stewart, PhD; Daan Archer, MBA; Peter Rowe, MD; Lucinda Bateman, MD; John Nicols, Eng., MBA, and Morgan Fairchild, Advocate.

You + ME Registry

The Solve ME/CFS Initiative operates the You + ME Registry and Biobank — an online clinical study committed to identifying a cure for myalgic encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS), Long Covid and other post-infection diseases. The Registry is a fundamental strategic initiative aiming to create the world’s largest longitudinal ME/CFS database and make it available to researchers around the world. We incorporated Long Covid — which shares many similarities with ME/CFS — so that understanding one can illuminate the other.

Designed for and by patients, the Registry community is made up of people with ME/CFS, people with Long Covid and control volunteers collectively providing the research community with critical insight into the lived experience and genetics of these and other post-viral illnesses. 

Ramsay Grant Program

Solve M.E. operates a seed grant program for early-stage researchers (not to be confused with ME Association's Ramsay Research Fund). The Ramsay Research Grant Program is the largest source of private, peer-reviewed, research grants in the field of ME/CFS and one of the only avenues researchers have to obtain funding for pilot studies. The Ramsay Program has had huge success in attracting new researchers to the ME/CFS and Long Covid fields and ensuring they stay engaged, while also facilitating applications for larger grants based on promising pilot data.

Since its launch in 2016, Solve M.E. has invested $833,000 in Ramsay Grants, which in turn helped researchers receive over $7,000,000 in additional research funding — a 9X return on the investment. 

DecodeME

In December 2020, Solve M.E. announced that they had joined the DecodeME project, a UK-based research initiative involving DNA analysis of ME/CFS patient saliva.

Long COVID Alliance

Solve M.E. announced that they had co-founded the Long-COVID Alliance in February 2021 to "transform our understanding of “long haul” diseases, including ME/CFS, Long COVID, and other post-infectious chronic diseases.  The Alliance is a network of patient-advocates, scientists, disease experts, and drug developers who have joined together to leverage collective knowledge and resources to educate policy makers and accelerate research to transform our understanding of post-viral diseases. 

Funding

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

Solve M.E. received four out of four stars and 90.23 out of 100 points from Charity Navigator, America's largest independent charity evaluator.

Public awareness campaign

• Times Square Public Awareness Ad, Sept 1, 2016

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

Public Service Announcement

• Announcing The Solve Long Covid Initiative, January 2022

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The Solve Long Covid Initiative

Newsletters

The Solve M.E. Chronicle newsletter is released several times at year. Archives for past issues are available online.

Resources

Resources for People with ME/CFS & Caregivers

• As someone living with and managing ME/CFS, we know you have questions. We've compiled resources and links to information about some of our most commonly asked questions. 

Resources for Medical Providers

• Because it is not yet fully understood, there is no cure for ME/CFS, nor are there any FDA-approved drugs or treatments. However, there are interventions and symptom-reduction strategies that you can use to significantly improve patients’ quality of life. Providing compassionate and effective care for patients with ME/CFS can be challenging, like many other multisystemic chronic conditions. Patients and their providers must be partners with open lines of communication in order to effectively manage this illness. Visit our website for education on ME/CFS based on current research.

Solve M.E. Webinars

• Solve M.E. provides a free webinar series to educate patients, researchers, and healthcare providers, as well as to raise awareness of ME/CFS, Long Covid, and ‘long-haul’ diseases among scientists, political leaders, and the general public. All webinars are recorded and posted on our website and YouTube channel following the presentation so that you can access the content at your convenience.

Ways to Get Involved

We’re making breakthroughs that can improve the lives of millions who suffer from ME/CFS, Long Covid, and other post-infection “long haul” diseases. Here are some ways you can join our fight.

• Join the You + ME Registry: The You + ME Registry and Biobank is a collection of patient-reported data and biological samples from people living with ME/CFS, people with Long Covid and control volunteers. A large, rich dataset gathered over time from thousands of people will drive discovery towards potential treatments and cures.
• Take Action! Join Our Current Advocacy Efforts: Our online action tools make it easy to learn about the most current advocacy action items, connect with your elected officials, and share your story with your members of Congress.
• Share Your Story: Humans of M.E. was launched to help increase awareness of — and ultimately research funding for — the millions of people whose lives have been stolen by ME/CFS and Long Covid.
• Apply for a Ramsay Research Grant: Are you a researcher? Through the Ramsay Research Grant program, Solve M.E. invests in research studies in ME/CFS or Long Covid with a particular emphasis on engaging young investigators and researchers new to the field. Learn more and apply for a Ramsay Grant.
• Sign Up for Our Webinar Series: Solve M.E. provides a free webinar series to educate patients, researchers, and healthcare providers about ME/CFS, Long Covid and other post-infection diseases.
• Subscribe to our Newsletter: Stay up-to-date on the most recent information and expertise related to ME/CFS, Long Covid, and other post-infection “long haul” diseases, as well as programs and developments at Solve M.E.
• Donate Today: Solve M.E. relies on the generous support of patients, family members, and friends to sustain our important work. When you support us, you stand united with thousands of like-minded people who understand the devastation of these diseases.

Contact information

Solve ME/CFS Initiative

350 N Glendale Avenue Suite B #368 Glendale, CA 91206 Phone: 704-364-0016 [1]]

Online presence

• YouTube
• Web site
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• LinkedIn
• Instagram

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• Wikipedia - Solve ME/CFS Initiative

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.

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.

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.

Social Security Administration (SSA) - SSA is the United States government department for disability benefits, unemployment, and social security/welfare that handles SSD and SSI disability payments.

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.

chronic disease a disease or condition that usually lasts for 3 months or longer and may get worse over time. Chronic diseases are long-term (typically incurable and requiring long-term management) but are not necessarily severe.