You + ME : A Registry for the ME/CFS and Long-COVID Communities

After months of collaborative development with community members and researchers, we opened the You + ME Registry for enrollment in June 2020. You + ME is driven by a big vision — building a community of thousands contributing health information to create the largest dataset ever for ME/CFS research. Many research projects have come to a stop due to COVID-19 stay-at-home orders and lab closures, but You + ME is completely online, turning each individual and their data into a research project incubator from the comfort and safety of home.

There is emerging evidence that many individuals who were infected with the novel coronavirus, which causes the COVID-19 disease, are suffering with persistent symptoms – the “long-haulers”.

To better understand the reasons behind this, we are using the You + ME Registry and Biobank to collect data and biological samples from individuals with and without persistent symptoms. We will also compare these data to information from people with myalgic encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS), to characterize similarities and differences between the two groups.

In this webinar, Solve M.E. Director of Research Programs Allison Ramiller and CEO Oved Amitay take a closer look at what the registry has to offer, and how to make the most of your You + ME experience!

[luvinmaks]

Thank you! Eighteen long years with CFS/ME and much humiliation from the medical field. I'm surprised I'm still alive. I had to leave the video after 5 minutes but will come back another time and try another few minutes.

[dawnknight]

Suggestion: because most of the people watching this are fatigued. How about making much shorter videos- 10 minutes maximum. Short concise and snappy. With simple slides, or pictures/ graphs. 👍😸

[mudslinger]

I have ME. I could not endure the rapid fire monotone vocal fry droning. Like hearing a quacking duck, ten minutes was too long. Others add annoying high pitch noises that isnt music to us. Is your intended audience non ME? Huge disconnect, wish someone asked ME sufferers before they record a track too harsh for us to listen to. I suggest vocal coaching like any other profession needs training...