SOLVE M.E. PARTNERS

Solve M.E. partners with key medical organizations and government agencies to influence the ME/CFS & Long Covid narratives, advocate for research funding, nurture promising findings, and articulate effective, data-driven policies and solutions. 

Our organization acts as an agent for change and unity in the ME/CFS and Long Covid communities by advocating for policies, funding, and action. We meet with senior government officials, medical and industry leaders, and scientific pioneers; only a strong and multi-faceted coalition of stakeholders will effect change at the federal level. This spirit of collaboration has led to positive and ongoing relationships with the National Institutes of Health (NIH) and the Centers for Disease Control (CDC), among many other organizations.

Below you will find a list of our current partners:

Solve M.E. and Action for ME work with postdoctoral fellows as part of the Solve/Action for ME trans-Atlantic partnership.

This two-year, jointly funded, £120,000 ($170,000) fellowship is designed to prepare researchers early in their career to excel in studies focusing on applying computational biology, biostatistics, quantitative genetic and data science to understanding the molecular basis of ME (myalgic encephalomyelitis). 

Dr. Ponting co-leads DecodeME, the largest ever ME/CFS genetic study, which is recruiting 25,000 participants. The study aims to aid development of diagnostic tests and targeted treatments by pinpointing differences in the genetic material (DNA) that may affect risk of developing ME/CFS and reveal underlying causes of the condition. Genome-wide studies have helped uncover causes of other complex diseases such as Alzheimer’s and type 2 diabetes.

Solve M.E. is part of the The Center for Solutions for ME/CFS at The Columbia University Center for Infection and Immunity, an NIH-Funded Collaborative Research Center (CRC). Solve ME is a collaborator that also serves on the Community Advisory Committee, which the CfS for ME/CFS utilizes to assist with the development and execution of the Center’s activities. 

We are partnered with our UK colleagues Action for ME and Professor Chris Ponting of the Medical Research Council Human Genetics Unit at the University of Edinburgh on the world’s biggest biomedical study of the causes of ME/CFS.

The DecodeME genome-wide association study will enroll 20,000 individuals with ME/CFS living in the UK using the You + ME platform. The goal is to analyze DNA from the saliva of people with ME/CFS to see whether the disease is partly genetic and if so, help pinpoint what causes it. The study should help us understand the disease and ultimately find treatments.

This partnership is a significant step towards our vision of creating the largest global dataset of individuals with ME/CFS, and we couldn’t be more thrilled to be working together.

Doctors with M.E. is the global professional association for medical practitioners and scientists in the field, bringing together leading experts, regional associations and the quarter of a million healthcare professionals with ME that already existed pre-pandemic. They are a unique authority on myalgic encephalomyelitis and those Long Covid patients acknowledged by NIH, NIAID and BMA narratives who risk progression to this neuroimmune disease. With professional backgrounds developed in hospitals, surgeries, universities, financial services and think-tanks, their range of expertise is both specific and multidisciplinary.

The You + ME Registry is partnered with Emerge Australia, a national organization providing information, support and advocacy for people living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Their work gives hope and help to more than 250,000 Australians living with ME/CFS.

The Global Interdependence Center (GIC) seeks to encourage the expansion of global dialogue and free trade in order to improve cooperation and understanding among nations, with the goal of reducing international conflicts and improving worldwide living standards.

GIC provides a forum for the exchange of divergent perspectives — engaging experts to identify emerging economic, social and political issues vital to the interdependent global community; organizing country and region-specific meetings, conferences and briefings for educational and networking opportunities; and promoting global partnerships among governments, non-governmental organizations, corporations, businesses and academic and research institutions.

The mission of the IACFS/ME is to promote, stimulate and coordinate the exchange of ideas related to CFS, ME and fibromyalgia (FM) research, patient care and treatment.

In addition, the IACFS/ME periodically reviews the current research and treatment literature and media reports for the benefit of scientists, clinicians and patients. The IACFS/ME also conducts and/or participates in local, national, and international scientific conferences. This is to promote and evaluate new research, and to encourage future research ventures and cooperative activities. All this is carried out as part of the effort to advance scientific and clinical knowledge of these illnesses.

LiveOn.org is a non-profit community established to support the millions of chronically ill who suffer from post-infection diseases, such as ME/CFS and Long Covid. 

Through awareness, education, personal stories, and digital connection, we are striving to help those who are suffering, their caregivers, and the healthcare community come together to support, to encourage, and to find solutions that shorten the journey to a better quality of life.

Solve M.E. co-founded the Long COVID Alliance to strengthen the fight to return millions of Americans to health. Co-founded by Hunter Howard, chair of the Global Pandemic Coalition, and Karyn Bishof, founder of the COVID-19 Longhauler Advocacy Project, the LCA is a network of patient-advocates, scientists, disease and public health experts, and drug developers, who have joined together to leverage our collective knowledge and resources to educate policy makers and accelerate research to transform our understanding of post-infectious illness.

Solve M.E. is proud to collaborate with #MEAction regularly on key national and international advocacy efforts. In 2017 and 2019, #MEAction co-sponsored ME/CFS Advocacy week bringing exceptional knowledge base, organizing skills, and media savvy. Collaborations with #MEAction resulted in major advocacy victories, like the unanimous passage of S. 225 “A resolution supporting the goals of International ME/CFS Awareness Day.” 

Solve M.E. is a proud member of the National Health Council, which brings diverse organizations together to forge consensus and drive patient-centered health policy for the 160 million people living with chronic diseases and disabilities and their family caregivers.

The Patient-Led Research Collaborative is a group of Long Covid patients who are also researchers. Comprised of researchers in relevant fields – biomedical research, participatory research, neuroscience, cognitive science, public policy, machine learning, human-centered design, health activism – in addition to having intimate knowledge of COVID-19, the Patient-Led Research Collaborative conducted the first research on Long Covid in April 2020.

Responsum Health is a healthcare startup company that develops and provides free, disease-specific patient engagement platforms and generates a personalized newsfeed of article summaries vetted by Responsum’s patient group and subject matter expert partners. For patients with chronic illness, Responsum Health replaces the need to sort and sift through the Internet on their own with a professionalized search and summary service; indeed, no other such app or platform exists.

Solve M.E. has partnered with the University of California, Los Angeles (UCLA) Iris Cantor Women’s Health Center to expand ME/CFS research through their Annual Health Pilot Program — the first time an ME/CFS study has been included. Solve M.E. will support a study by the UCLA Neuromodulation Division on a promising investigational treatment. The partnership is generously supported by Karl Zeile, a Solve M.E. board member, and Dian Zeile.

The US Action Working Group is an informal group of ME/CFS patients and advocates who communicate and collaborate with one another. They welcome those who feel they can be stronger together and who want to help improve the lives of ME/CFS patients. They focus on actions they can take in the United States, knowing that any progress helps patients everywhere.

Solve M.E. is a founding member of the World ME Alliance, formerly the International Alliance for ME. A unique alliance of ME/CFS organisations from around the world, its membership is made up of senior leads/representatives from national ME/CFS organisations, working together to achieve change for people with ME/CFS at a national and international level.

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