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

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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Enrolling: NIH Intramural Study

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

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Enrolling: Harvard brain scan PEM study — local only

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.

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Research News

Where Does Your Donation Go?

Do you ever wonder where your money goes when donating to your favorite charity? We certainly do! Why? Because we want to make sure that every gift we receive generates the greatest impact in our collective fight for research, medical education, and public recognition of myalgic encephalomyelitis/chronic fatigue syndrome. This is why we wanted to

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IACFS ME logo

Register for the IACFS/ME Conference

Join IACFS/ME, the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and people with ME, supporters, clinicians, and researchers for the 2021 IACFS/ME Virtual Conference, held August 19-21, 2021. Attendees will have access to three days of virtual workshops, lectures, and updates on recent developments in ME/CFS research.  Some of the conference events include: “Orthostatic Intolerance

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CDC website in browser tab

Sign on to #MEAction’s response to flawed CDC review

MEAction Response to CDC #MEAction has released a draft response to the CDC’s flawed systematic evidence review on ME/CFS treatments. Sign our form by August 15, 2021 to have your name added to #MEAction’s response before we formally submit it as a public comment on August 16. We need to demonstrate strong community opposition in

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TWO WEEKS TO SEND IN YOUR RESEARCH IDEAS

Help prioritise ME/CFS research by filling in this survey A major UK project is looking for your input. They want to know what research you think should be funded in the future, and the deadline for adding your ideas is fast approaching. Your responses must be in by Monday 5th July 2021. Find out more

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Graphic of people sitting on stools having a discussion

Cochrane redux

Get caught up!  Start with Cochrane Analysis: What’s Here, What’s Missing, Conclusions What has gone on before Cochrane Reviews are well-known systematic reviews of studies in healthcare, and are internationally recognized — enough to be considered the last word in healthcare as far as some medical publications are concerned.  In 2019, Larun et al. wrote

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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

Read More »
National Institutes of Health (NIH) logo on side of building

#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

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