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. Vice President of Advocacy and Engagement Emily Taylor was named as Solve M.E. President and CEO on April 8, 2024. She was preceded by Kristin Jacobson (October 2023-April 2024), Oved Amitay (2020-2023) and Carol Head (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 infection associated chronic conditions and illnesses (IACCIs).

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 infection associated chronic conditions and illnesses (IACCIs) 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.

Solve Together

Solve M.E. launched its new patient-centered real-world data platform Solve Together in September 2023. Solve Together builds upon the work of the You + ME Registry to further our understanding of ME/CFS and Long Covid, and the valuable data contributed to You + ME continues to be used by researchers.

Solve Together brings extensive advantages to the patient community and researchers. It integrates multiple data sources designed to speed up the discovery of treatments and cures. Solve makes data on post-infectious diseases accessible to researchers, expediting the identification of diagnostic and therapeutic targets. Patients can create reports for their doctors, sync health-tracking wearables, and discern their distinct symptom and health trends. Solve Together will also enable Solve to connect researchers with individuals interested in participating in clinical research studies.

Any U.S. adult can join Solve Together, whether they have ME/CFS, Long Covid, other post-viral fatigue-related illnesses, or none of these conditions (serving as “Control” participants). Joining is free, voluntary, and participants can opt out anytime.

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. 

In September 2023, You + ME transitioned to Solve's new patient-centered real-world data platform, Solve Together.

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

In August 2022, Solve launching the first of its kind national TV and Radio Public Service Announcement (PSA) campaign about Long Covid entitled “How Long?”. The goal of the campaign was to broaden awareness of Long Covid, ME/CFS and other post-infection diseases, create empathy for those who suffer their devastating impact, and highlight the need for research to adequately help patients. The campaign featured :60, :30 and :15 TV and radio ads in English and in Spanish.

Solve created the campaign in collaboration with the Entertainment Industry Foundation (EIF), a unique non-profit that leverages the powerful voice of the entertainment industry to develop and enhance programs on the local, national and global level that facilitate positive social change. The EIF has been instrumental in developing and promoting many important healthcare initiatives, such as Stand Up to Cancer.

Through this partnership, the campaign was supported by nearly $60 million in donated airtime with an estimated audience of nearly 1 billion.

In October 2022, the PSA was followed by a satellite media tour to raise awareness about Long Covid, ME/CFS, and other post-infection diseases. ME/CFS and Long Covid medical expert and Solve Research Advisor Council member Dr. Peter Rowe and Solve board member, health equity expert, and Long Covid Patient Cynthia Adinig conducted 27 media interviews with nationally affiliated TV and radio news programs in a single day, discussing the desperate need for treatments and cures. Their interviews received over 400 national airings, reaching an estimated audience of 7 million (TV, radio, online).

In each interview, Dr. Rowe explained the complexities of diagnosing and treating Long Covid, emphasizing that it’s not a “new” problem, but just the latest in a long line of post-infection diseases, such as ME/CFS. Dr. Rowe told journalists that we must connect the dots and link Long Covid to other post-viral illnesses like ME/CFS in order to apply learnings from prior research. He emphasized the real need to include ME/CFS and other post-infection disease patients in all studies of Long Covid.

• 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]]

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• Wikipedia - Solve ME/CFS Initiative

See myalgic encephalomyelitis.

See chronic fatigue syndrome.

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.

See Chronic Fatigue and Immune Dysfunction Syndrome.

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.

See Chronic fatigue syndrome advisory committee.

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.

See Centers for Disease Control and Prevention.

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.