Community Resources

Research Participation

You + ME Registry: The You + ME Registry and Biobank is a collection of patient-reported data and biological samples (e.g. blood) from people living with myalgic encephalomyelitis (also known as chronic fatigue syndrome or 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. Join the You + ME Registry and help find a cure.

The Lean Test:
This study aims to assess the clinical utility of the Lean Test as well as the impact of orthostatic stress on the metabolome and the epigenome. Study participants will complete a supervised Lean Test with a randomly selected subset of study participants providing blood samples before and after testing. Both ME/CFS patients and healthy controls will be needed to complete this study.

Recruitment of ME/CFS Patients and Healthy Controls will be held at the following sites:

Clinical Trials (Domestic and International Opportunities)
The NIH U.S. National Library of Medicine updates their database with on-going clinical trials worldwide. You can sort by status of the trial, eligibility criteria, location, and topic.

Community Groups

#MEAction is a grassroots, international organization that provides a platform to empower people with ME and related conditions and advocates for patients in the pursuit of health equality. Their mission is to continually build community and provide a voice for patients, families, and allies of ME, based on the belief that while it may be difficult to individually advocate, making activism accessible can amass a louder voice for the community as a whole.

Solve ME/CFS Initiative is a non-profit disease organization that works to accelerate the discovery of safe and effective treatments for ME/CFS, strives for an aggressive expansion of research funding that will lead to a cure, and seeks to engage the entire ME/CFS community in research and advocacy. Solve ME serves patients and researchers alike, acting as an information and data hub for the ME/CFS community.

Patient Resources and Forums

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