Solve ME/CFS Initiative's ME/ CFS Patient Registry: You + M.E.

Preview of the project.

http://solvecfs.org/wp-content/uploads/2018/01/Chronicle_National_Patient_Registry.pdf

ETA: Title, and minor formatting corrections.

 

Webinar: Solve ME/CFS Initiative, "You + M.E.: A community resource, built by the community", 6th December 2018

Register at https://register.gotowebinar.com/register/5744870584301904899

ETA: Title

 

Recording of the webinar now available on Facebook here

Code:

https://www.facebook.com/SolveMECFSInitiative/videos/2194607644084672/

 

If anybody wants to take the survey on data collection that is mentioned then it can be found here, https://sadiewhittaker.typeform.com/to/ajXoAC

 

Webinar is now available on YouTube

Code:

https://youtu.be/Hc03M-lM6FE

 

After a quick scan of their website (https://solvecfs.org/eligibility/) I wasn't clear about whether the You + M.E. registry was a US or an International initiative so sent them an email enquiry. Here's their reply: International.

Pre-register here if interested: https://solvecfs.org/you-m-e-registry/

Will be interesting to see more detail next year.

 

From an email sent today by Solve

Thank you for being one of the first to pre-register for the You + M.E Registry and Biobank. It’s been awhile since we’ve checked in, so we wanted to give you a progress update.

As you know, the goal of You + M.E is to collect health information and biological samples from people living with ME/CFS and healthy volunteers, and to make the anonymized data and samples available for research. The growth of this Registry will create an information hub that will help us better characterize ME/CFS and define disease subtypes.

There are two key components to achieve this goal:

1. Collaboration and partnerships with other registries and research groups that will allow us to build the biggest dataset possible
   
2. Tools that will incorporate rich sources of data, including a way to record health information on an ongoing basis

You might be wondering why the Registry is taking longer than we anticipated to launch. The answer is that we’ve been working hard behind the scenes to establish partnerships: you may have seen our recent announcement here.



We’ve also developed a mobile app for easy capture of data over time. We recently ran the app through beta testing with a group that included people living with ME/CFS and their loved ones, and experts from clinical care, research, and technology. Feedback from this test group is currently being incorporated. Below are some screengrabs of the beta version app.



Thank you for your patience and continued partnership as we build a big data revolution for ME/CFS!
​

A reminder that this Q&A with Sadie Whittaker from Solve discussed the registry and app, https://www.s4me.info/threads/video...r-from-solve-me-cfs-initiative-may-2019.9425/

 

A video preview of the registry.

Code:

https://youtu.be/Anz5fwcWLOw

And a You+ME Impact Tool, https://youandmeregistry.com/m-e-impact-tool/, that they say is "designed to create a visual way to communicate the impact of ME/CFS."

 

I will certainly be taking part. Looking forward to it. At first I wasn't sure because it was supposed to have been already funded as part of a NIH grant and seemed to duplicate efforts:

But precise.ly don't appear to have made any progress. There was an announcement that the service would have started early this year but it almost appears to have closed down. It appeared to be quite big, a side venture from the 23andme founder. But now what?

https://www.jax.org/news-and-insights/2017/september/new-chronic-fatigue-center-grant

So basically SMCI is doing the work that NIH already funded? Or is it different? Additive? Which is probably a good idea since they can't seem to commit to anything but that already appeared to have significant funding. Will this patient registry be part of the common data elements? What happens to that precise.ly funding then?

Still not much transparency about what is happening out of NIH funding. Same old same old.

 

Just to highlight you can pre-register on the Registry website, https://youandmeregistry.com/, and if you have any feedback you can send it to registry@solvecfs.org

 

Solve M.E. Announces Launch of You + M.E. Registry and Biobank to Transform the Study of ME/CFS and Post-viral, Chronic Illnesses Likely Impacted by COVID-19
Jul 15, 2020

full article here
https://www.biospace.com/article/re...hronic-illnesses-likely-impacted-by-covid-19/

 

From an email from Solve.

We are thrilled to report that the You + M.E. Registry & Biobank has enrolled over 1,300 participants, including 1173 people with ME/CFS and 149 non-ME/CFS control volunteers!

In the medical community, we have seen firsthand the power of big data in solving the mysteries of medicine. Big data has transformed our understanding of many diseases, enabling us to characterize disease subtypes, and develop personalized therapies for serious illnesses.

When our team set out to develop the You + M.E. Registry and Biobank 2 years ago, we knew we were onto something big. But to do it right, we knew we had to start small - within our own community. To this end, we held 1:1 in-depth interviews, and integrated people with ME/CFS, caregivers, clinicians, and researchers into our design, development and testing.

Recently, we took this a step further by sending a Community Feedback Form to learn more about the You + M.E. experience. Here’s what we’ve learned :

1. There is a lot of enthusiasm in the community - within minutes of sending out the survey, over (50) Community Members filled out the survey! We’ve logged feedback from (95) people so far.
2. Over 75% of Community Members surveyed reported an overall You + M.E. satisfaction score of 7 or higher out of 10 (wahoo!)
3. Half of the Community Members surveyed downloaded our Symptom Tracking App, and of that group, 78.6% reported a score of 7 or higher out of 10.

One Community Member said :

“I am so pleased to have joined this app.
I don't feel so alone now or so out of control.
By logging how I feel, I am able to make more sense of my condition.
Thank you for all you are doing.” -- Person living with ME