ME Research Actions

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#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.

Contact [email protected] to learn more!


Enroll in a Research Study

University of the West of Scotland Looking for Research Participants Featured Image

Be part of designing UWS research into ME and long COVID

UPDATE: The research team have let us know that they’ve received a huge response to this request and they now have the information they need. They’ll be in touch with people individually if they are eligible to participate in the study. If you got involved, thanks for your support! Researchers at the University of the

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Stanford study (no longer enrolling)

Who: Ron Davis’s lab at Stanford University is conducting a functional microbiome study in collaboration with Harvard University and Vassar College. They are looking for severely Ill, primarily bed-bound patients within the United States to participate. What: Participants will be asked to provide a one-time fecal swab which can be collected at home and sent

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Investigating the impact of Covid-19 on ME – Survey

Please help #MEAction UK and #MEAction Scotland by taking part in this survey to find out the effect that Covid-19 has on people with ME. Take the survey We are working in collaboration with Action for ME to gather evidence on the impact of Covid-19 on our community. We have heard many stories from people

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Impacts of Shift Work on Chronic Conditions

Who: Dr. Rachael Blasiman and Hayley Shasteen at Kent State University are interested in shift workers and people with chronic conditions. You may still participate if you do not fit in either category. What: Participation is anonymous and involves taking a survey that will take approximately 30 minutes. The survey will ask questions about shift

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ME/CFS International Family Impact Study

Who: Dr. Nina Muirhead and the Study Team at Cardiff University, United Kingdom have developed a survey with two questionnaires, one for the patient and one for a life partner or family member. If you cannot be together to complete it, you can save and return. What: An international research study, looking at the impact

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Enrolling studies: Internet-Based Participation

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

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Enrolling: Naviaux Lab Metabolomics Study

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!

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Enrolling: EDS Genetics Study

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

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Enrolling: Stony Brook University ANS Study

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

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Research News

New T-Cell Research at the University of Massachusetts

#MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, sat down with Dr. Liisa Selin, MD, PhD, and Dr. Anna Gil, PhD, recipients of an R01 grant to research immune system dysregulation in people with ME/CFS. Selin, a professor of pathology and a person with ME herself, and Gil, a viral immunologist, comprise the two-person

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Mayo Clinic logo on a open laptop screen

Exciting news about Mayo Clinic!

We’ve got some very exciting news this week! Clinicians working at the Long COVID clinic at Mayo Clinic’s campus in Rochester, Minnesota met with #MEAction to discuss treatment, research and improved community engagement for people with ME! They reached out to us because they were interested in engaging with a national patient-led organization with strong

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ME/CFS on TV (Part 3)

RETURN TO PART 1 OF THIS SERIES HERE ME/CFS ON THE ITALIAN TV SCREEN: A VIRTUOUS MODEL by Giada Da Ros Through sundry television spaces (news, fiction, talk shows), the ME/CFS community challenged existing political, medical, and philosophical approaches to the illness (and to maladies in general).  The community sought to re-appropriate the discourse, fight

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ME/CFS On TV (Part 2)

RETURN TO PART 1 OF THIS SERIES HERE “THAT’S WHY THEY DON’T BELIEVE YOU, YOU DON’T LOOK SICK!”: FICTIONAL REPRESENTATIONS OF ME/CFS by Giada Da Ros Sociologists emphasize the importance of social and cultural representation of social and cultural representation of chronic and emerging disease, both for individual and collective behavior. “(T)he fact that people

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University of the West of Scotland Looking for Research Participants Featured Image

Be part of designing UWS research into ME and long COVID

UPDATE: The research team have let us know that they’ve received a huge response to this request and they now have the information they need. They’ll be in touch with people individually if they are eligible to participate in the study. If you got involved, thanks for your support! Researchers at the University of the

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ME/CFS on TV (Part 1)

ME/CFS IN EARLY TV DISCOURSE: QUESTIONING GOVERNMENTAL POLICIES AND CHALLENGING THE CONCEPTIONS OF DISEASE AND MEDICINE  by Giada Da Ros As patients who suffer from it well know, myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a life-altering, debilitating, chronic, systemic disease that frequently and dramatically limits the activities of affected patients (Open Medicine Foundation).

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In Memory of Dr. Ronald G. Tompkins MD, ScD

Mourning the loss of Dr. Ron Tompkins

Today #MEAction joins the community in mourning the loss of Dr. Ronald G. Tompkins, MD, ScD, who passed away this week. Ron Tompkins was a clinician, clinical researcher, and friend and ally to people with ME. He was the Sumner M. Redstone Professor of Surgery at Harvard Medical School, Founding Director of the Center for

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Apply to join the UK’s ME/CFS priority setting workshops

Over 2,000 people with ME/CFS, carers and health professionals in the UK engaged with the recent survey from the ME/CFS Priority Setting Partnership.   Through three stages of participation, this process is aiming to define the top ten research priorities for people affected by this disease.    The process now has just one more step – and you could be part of it.   These

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Medieval Town of Med-Ed Featured Image

#MEAction Arrives in the Medieval Town of Med-Ed

Here’s a hearty hello from the Medieval Town of Medical Education!  Lords and Ladies,  We did it!… we got over $75,000 (£56,781) which means we have arrived at this new land on our Giving Adventure Map. I’m Laurie Jones, the Managering Elf, and I am going to tell you what awesome stalls await you at

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CDC must act now to stop flawed review of ME/CFS treatments

In advance of next week’s CDC ME/CFS Stakeholder Engagement and Communication (SEC) call, #MEAction has sent a letter to Chronic Viral Diseases Branch Chief Dr. Elizabeth Unger requesting her to clearly and directly address our four key objections to publishing a flawed evidence review of ME/CFS treatments that CDC commissioned. Read Letter The review wrongly

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