Enrolling: International ME/CFS Family Impact Study
January 26, 2021
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This online international ME/CFS Family Impact Study looks at the quality of life of patients and their family members.
ME Research Actions
#MEAction aims to grow the scientific field through outreach, education, and fellowship opportunities for young investigators, and by empowering patients to understand, engage with and participate in research.
How to get involved
Researchers and Clinicians
- If you’re a researcher interested in learning more about this field, start here to browse a list of resources.
- If you’re currently in the field, we’d love to support you by disseminating information about your work to the community by:
– Writing about your research for our website.
– Getting the word out about your currently enrolling research study.
– Helping with press outreach around your forthcoming research publication. - We’re also always looking for researchers and students to contribute to MEpedia, our crowd-sourced encyclopedia on the science and history of ME.
To learn more, email [email protected].
Patients & community
There are so many ways you can help support research and the generation and dissemination of scientific knowledge about ME.
- You can contribute to our MEpedia project.
- You can write articles about science for our website, and support our scientific outreach and field-growing efforts.
- You can also sign up for our newsletter, follow us on Twitter, and join one of our Facebook groups to keep up to date about currently enrolling studies.
Contact [email protected] to learn more!
Enroll in a Research Study
Enrolling studies: Internet-Based Participation
February 11, 2020
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What: Researchers at Southern Connecticut State University are currently enrolling individuals in a study that will examine an intervention app for people living with ME/CFS. This app monitors daily perceived and expended energy and fatigue levels. Participants will be asked to complete an online survey about their health history, ME/CFS symptomology, as well as current
Enrolling: Naviaux Lab Metabolomics Study
July 21, 2019
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Who: Looking for adult women with ME, Lyme’s Disease (post-treatment), or healthy controls that are currently living in Southern California or live within two hours of San Diego. Note that you will need to avoid food for three hours prior to your blood draw. What: Participants for the new Naviaux Lab Metabolomics Study are needed!
Enrolling: EDS Genetics Study
May 22, 2019
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What: The Ehlers-Danlos Syndrome (EDS) Society is recruiting individuals to participate in a genetic evaluation study. ME/CFS and EDS have a range of similarities and overlap. EDS is a connective tissue disorder in which musculoskeletal pain, joint pain/hypermobility, and fragile skin are considered common manifestations. Who: 1000 individuals with Hypermobile EDS as well as their family
Enrolling: Stony Brook University ANS Study
May 14, 2019
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Who: Researchers at Stony Brook University– funded by the National Institue of Health What: The goal of this study is to use data obtained from participants to compare the relationships between fatigue, physical activities and autonomic function (heart rate variability). Individuals with ME/CFS as well as healthy controls are needed. Those who participate over the entire
Enrolling: NIH Intramural Study
March 12, 2019
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Overview The objective of this research study is to look in-depth at the clinical and biological characteristics of ME/CFS. Participants with ME/CFS are inpatients at the clinical center at NIH for approximately two weeks on their first visit and another two weeks if they return for the second round of the study. There will be
Enrolling: Harvard brain scan PEM study — local only
February 19, 2019
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Who: Michael VanElzakker, PhD, Massachusetts General Hospital/ Harvard Medical School is looking for participants living in, or near the Boston area to join his study. What: Participants will rest on their backs in a high-resolution MRI machine that is capable of measuring both the concentrations of certain chemicals and the movement of oxygenated blood in the brain.
Enrolling: Take an online survey to give feedback on a new app for ME
February 15, 2019
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Listen to the article: Who: Doctors from Columbia Medical center are interested in creating a mobile app called “my ME/CFS” for those with Myalgic Encephalomyelitis (ME). What: A survey that would provide information to doctors that are aiming to create this application; the app would provide a place for individuals with ME to report
Enrolling: NIH Focus Group on PEM
January 7, 2019
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Overview The NIH is currently looking for volunteers with ME/CFS to participate in a focus group that will be used to learn more about PEM in daily life as well as to hear about your experiences with Cardio Pulmonary Exercise Testing (CPET) if you have experienced it. They are particularly looking for people in the
Enrolling: Online Pediatric Research Survey
November 5, 2018
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As there is currently limited research on pediatric ME/CFS, the purpose of the study is to improve our understanding of the symptoms and experiences of youth with ME/CFS by conducting a research survey. Who: The Center for Community Research at DePaul University When: Ongoing What: We would like to invite children/adolescents (ages 5-17) with myalgic
Research News
NIH official confirms $1.15 billion funding for long COVID research
We want to make you aware of new funding allocated through the Covid-19 relief package that has potential to make a real impact for ME, and why our federal agency work is at the forefront of all that we do. It was announced before the new year that $1.25 billion will be allocated to the
January 14, 2021
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#MEAction sends letter to NIH ahead of ME/CFS meeting
Last week the U.S. National Institutes of Health (NIH) announced it will hold its next ME/CFS Telebriefing on Thursday, Nov. 5 at 11am Eastern Time. #MEAction staff and volunteers worked quickly to draft a letter with detailed questions for NIH in advance of this meeting. You can read the full letter here. We will keep
November 4, 2020
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All Doctors Should Go To This Website For ME Information!
We are thrilled to share that The US ME/CFS Clinician Coalition has launched a website to provide clinicians with expert information on the diagnosis and management of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS).
September 18, 2020
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ME/CFS and Long COVID: What’s the Connection?
#MEAction hosted a seminar for post-COVID-19 “long haulers” on Friday, August 7, to learn more about ME/CFS as a potential diagnosis after viral infection, in partnership with Body Politic and the COVID-19 Working Group New York. Watch the seminar now!
August 25, 2020
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REPORT PART 2: NIH LACKS COORDINATED RESPONSE FOR LONG COVID RESEARCH
The NIH is shaping research initiatives to study the long-term consequences of COVID-19 (long COVID), but it lacks the coordinated, outcomes-focused strategy necessary to deliver biomarkers and treatments to the people who need them.
July 29, 2020
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REPORT PART 1: NIH IS NOT ADVANCING ME/CFS RESEARCH
The NIH is doing little to expedite a coordinated, outcomes-focused plan for ME/CFS research, an enormous missed opportunity in the era of COVID-19. Editor’s note: This is part of a report series on what the NIH is (and isn’t) doing for ME/CFS and long COVID research. For our Report Summary see here. For Report Part 2: NIH
July 29, 2020
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ANNOUNCING A SPECIAL JOURNAL ISSUE DEDICATED TO ME
We are thrilled to announce the scientific journal WORK: a Journal of Prevention, Assessment & Rehabilitation has devoted an issue solely to M.E. research.
July 22, 2020
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£3.2million granted for largest ME/CFS DNA study ever
Funding for the world’s largest genetic study into myalgic encephalomyelitis (ME), led by a partnership of patients and scientists, has been announced. Thanks to £3.2 million funding, awarded jointly by the Medical Research Council and National Institute for Health Research, work can begin on DecodeME, the ME/CFS DNA study that hopes to reveal the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition.
June 23, 2020
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The UK ME/CFS Biobank: a rich resource of samples and data
It is a strange time to be writing about the work of the UK ME/CFS Biobank (UKMEB); as I write, our office has been closed for over two months and clinical visits have been paused indefinitely; samples cannot currently be distributed. COVID-19 has created many challenges to our work and the research of many others,
June 3, 2020
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Washington Post Editorial Says Some COVID-19 Patients Will Develop ME
The Washington Post published an editorial last Saturday about how researchers are warning that COVID-19 may lead to long-term, debilitating illnesses, like myalgic encephalomyelitis (ME), in some patients. The editorial was written by former Washington Post reporter, Brian Vastag, and #MEAction co-founder, Beth Mazur, both of whom have ME. Many people infected with COVID-19 are
June 2, 2020
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