#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.
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Patients & community
There are so many ways you can help support research and the generation and dissemination of scientific knowledge about ME.
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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
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!
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
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
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
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.
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
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
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
Researchers at Stanford University have discovered that the brains of patients with ME display abnormalities in the white matter within the right hemisphere. It is crucial to further the research involved with these findings as they may lead to more definitive diagnoses of ME. Who: Dr. Montoya and Dr. Zeineh at the Stanford School of Medicine When: Ongoing What:
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).
#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!
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.
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
We are thrilled to announce the scientific journal WORK: a Journal of Prevention, Assessment & Rehabilitation has devoted an issue solely to M.E. research.
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.
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,
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
Recently, #MEAction received what may be the first, participant-led analysis of COVID-19, entitled What Does COVID-19 Recovery Actually Look Like? An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team. The Body Politic COVID-19 Support Group surveyed over 600 participants who had experienced/were experiencing COVID-19 symptoms for at least two weeks, revealing insights
Since a new coronavirus emerged from Wuhan, China late in 2019, some 3.8 million cases and 265,000 deaths have been reported world-wide. Governments are focused on treating patients acutely sick with COVID-19, the disease caused by the new virus SARS-CoV-2, and slowing the spread of the virus. However, a second crisis of long-term disability is
