“Each person living with ME/CFS is first and foremost a unique individual. This means their genetic composition, environmental exposures, and personal experiences lead to a unique symptom profile. My belief as a person with ME/CFS and 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, and triggers into carefully designed research studies. This will allow clinicians and researchers to better interpret study results and thus better progress for patients. This will be made possible with the You + M.E. Registry.”— Camille, a patient and researcher
“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, and 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 and help drive scientific breakthroughs that will improve the lives of the millions struggling to live with ME/CFS all over the world. The You + M.E. Registry will open up opportunities for people severely ill with ME/CFS and their loved ones to provide valuable data and biosamples for research.”— Sanna, a patient
“I fell ill with ME/CFS in 2010. I’m excited that the You + M.E. registry will make it easier for us to participate in research and 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, a patient
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 another post-viral chronic illness, 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 and 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, and I want to do everything I can to help him. It’s hard to see someone go through this condition and not want to help. Being a part of the Registry and Biobank is one easy way to do that.”— Gabe, a healthy control
We want to encourage the entire community to engage with You + ME as researchers. Here’s a few ways:
- Propose research questions in the community forum. Other community members can “upvote” your question and researchers can respond and 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, and make great contributions to research. Check out the researcher portal here.