Community Stories
Patients
“Each person living with ME/CFS is first + foremost a unique individual. This means their genetic composition, environmental exposures + personal experiences lead to a unique symptom profile. My belief as a person with ME/CFS + a bioinformatics researcher is that the key to understanding all the facets of this disease will start with incorporating this spread of symptoms, severities, onsets + triggers into carefully designed research studies. This will allow clinicians + researchers to better interpret study results and thus better progress for patients. This will be made possible with the You + ME Registry.”
— Camille, Researcher + Person with ME/CFS 
“My life has been deeply impacted by ME/CFS since 2013. At my very best, I can do laundry, cook using a stool, do light cleaning + walk very short distances outside, though I usually need a wheelchair to go most places. At my worst I am completely bedridden. I am extremely motivated to participate in research + help drive scientific breakthroughs that will improve the lives of the millions struggling to live with ME/CFS all over the world. The You + ME Registry opens up opportunities for people severely ill with ME/CFS + their loved ones to provide valuable data + biosamples for research.”
— Sanna, Person with ME/CFS 
“I fell ill with ME/CFS in 2010. I’m excited that the You + ME Registry makes it easier for us to participate in research + for researchers to gain access to our data. More researchers will conduct more studies with better results – because they’ll include more subjects, with better diversity. But this will only happen if we all participate. So let’s sign up and do it!”
— Tracy, Person with ME/CFS 
Healthy Controls
Healthy volunteers are a critical part of the success of You + ME. A healthy volunteer or control is someone with no known significant health problems who participates in research. To understand what is different for someone with ME/CFS, Long Covid or other post-viral illnesses, we need to be able to compare their biology to someone who is healthy.
“My mom has ME/CFS, so I know first-hand about the importance of being a healthy control. By volunteering to provide my health data + blood sample, I know I am helping researchers uncover what has gone wrong with my mom’s biology. This is a small sacrifice for me, but could have a major impact for individuals affected by ME/CFS.”
— Emily, a healthy control 
“My cousin is affected by this disease + I want to do everything I can to help him. It’s hard to see someone go through this condition + not want to help. Being a part of the Registry and Biobank is one easy way to do that.”
— Gabe, a healthy control 
Healthy Controls
We encourage the entire community to engage with You + ME as researchers. Here’s how:
- Propose research questions in the community forum. Other community members can “upvote” your question+ researchers can respond + use your ideas to build community-driven studies
- Apply to become a You + ME researcher yourself! Become a citizen scientist, look for patterns in the data + make great contributions to research. Check out the researcher portal here.
