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:

 

Action for ME

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.

 

Center for Solutions

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. 

 

 

Decode ME

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.

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.

 

Emerge Australia

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.

 

 

IACFS/ME: International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

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.

 

International Alliance for Myalgic Encephalomyelitis 

The International Alliance for ME (IAFME) is a collective comprised of advocacy and patient groups throughout the world. IAFME aims to lead a coordinated and appropriate public health response to Myalgic encephalomyelitis from the World Health Organisation (WHO), a specialized agency of the United Nations which is headquartered in Geneva, Switzerland.

 

 

The London School of Hygiene & Tropical Medicine | LSHTM

The You + ME Registry is partnered with The London School of Hygiene & Tropical Medicine, a public research university in Bloomsbury, central London, and a constituent college of the University of London that specialises in public health and tropical medicine.

 

 

Long COVID Alliance

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.

 

#MEAction

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.” 

 

UCLA

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 (USAWG)

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.