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 members are needed for this study.
 
When:  recruitment begins in June and runs until August.
 
Where:  recruiting centers will be located in Baltimore and Nashville.
 
How to participate: for a detailed list of scheduled recruitment dates please visit the official recruitment webpage.
https://www.ehlers-danlos.com/hedge-recruitment/ 
Facebook
Twitter
WhatsApp
Email

Latest News

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

Read More »

New Volunteer Leadership Program Led by Experts!

We are thrilled to announce that Chimére Smith and Terri Wilder will be joining #MEAction as consultants to execute a new volunteer leadership training program funded by the Ford Foundation! We are so thrilled that we will be able to expand our volunteer programs to include robust training and provide fulfilling roles and opportunities for

Read More »

Research Update: The NIH Intramural ME/CFS Study

National Institutes of Health researchers who began what may be the deepest biological investigation ever of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are writing up their findings and plan to circulate a draft among their large team of scientists and physicians for feedback soon.  “The study will help patients and should move the field forward in

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top