Community

Research Participation


Current Opportunities

Exercise Tolerance Testing in ME/CFS:
This study aims to assess the impact of exercise on the microbiome, the metabolome, the proteome, and the epigenome. Study participants of both ME/CFS patients and healthy controls will undergo a supervised exercise tolerance test with questionnaire, blood, stool, and saliva collections before and after testing.

This study is actively recruiting Healthy Controls at the following sites:


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:

  • Bateman Horne Center (Salt Lake City, UT)

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


The ME/CFS community has such strength in supporting each other as we navigate towards answers for this devastating disease. These are just a few of the patient forums available to find out more information on advocacy and learn about each other's journeys.

 

#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 (SMCI) 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. SMCI serves patients and researchers alike, acting as an information and data hub for the ME/CFS community.

Patient Resources


Have something to say? Need some more information? Here are some of the online places you can visit to read about what others are experiencing, share what you have encountered on your own path, or review some of the resources that may have some additional information.

Patient Forums

Science for ME is "where science and the ME/CFS community meet" with numerous message boards similar to a Reddit discussion board.
Phoneix Rising provides people with ME/CFS information to support their health and well-being. They publish articles and a newsletter, maintain the largest ME/CFS forum in the world, and have the biggest database of information about ME/CFS on the web.
Founded by Cort Johnson, Health Rising is dedicated to providing timely, accurate information to people with ME/CFS and fibromyalgia.
Written by Simon McGrath, the ME/CFS Research Review blog aims to explain the most promising biomedical findings with in-depth explanations of the science in the latest published studies.


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Additional References

CDC: America's Hidden Health Crisis: Hope for Those Who Suffer from ME/CFS

CDC: What is ME/CFS?

FDA: The Voice of the Patient. A series of reports from the FDA's Patient-Focused Drug Development Initiative for ME/CFS

HHS: Chronic Fatigue Syndrome Advisory Committee (CFSAC)

HHS Office on Women's Health: Chronic fatigue syndrome

MECFSnet: Website maintained by RTI with resources, news, and events

National Academies of Science: Beyond ME/CFS: Redefining an Illness (publication)

NIH: Trans-NIH ME/CFS Working Group

NIH Director's Blog: Moving Towards Answers in ME/CFS

NINDS: Common Data Elements (CDE)

RTI: RTI International

 

Ask Our Researchers Series