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

https://www.youtube.com/watch?v=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

https://www.youtube.com/watch?v=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

 

https://twitter.com/user/status/1300871448576364545

 

Start of Twitter thread.

Code:

https://twitter.com/YouMeRegistry/status/1311693911736438786

https://twitter.com/user/status/1311693911736438786

 

Code:

https://twitter.com/YouMeRegistry/status/1314234148450709504

https://twitter.com/user/status/1314234148450709504

 

Latest email from Solve.

Register for Our December Webinar Now!
You + ME: A Registry for the Whole ME/CFS Community


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 COVID19 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.

In this webinar, Solve M.E. Chief Scientific Officer Dr. Sadie Whittaker 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!

When:
Wednesday, December 16 at 10 am PT/1 pm ET

Register here.



You Make Our Webinars Possible!
Did you get helpful info from a Solve M.E. webinar? You’re not alone. Nearly 30,000 people have registered for or viewed one of our informational videos about ME/CFS in the last two years. Your gift makes all the difference in providing this open resource to the ME/CFS community.

We create as many as 10 webinars every year, each with timely research updates or targeted educational content valuable to patients, researchers, and health care providers.

You can watch all of our webinars here.

Producing them requires funding and resources. Please consider making a donation to Solve M.E. today to help us continue to provide the most accurate and up-to-date information about ME/CFS to the world at large!

 

Code:

https://twitter.com/YouMeRegistry/status/1318288344615444480

https://twitter.com/user/status/1318288344615444480

 

From an email

We’re thrilled to announce that enrollment in the You + ME Registry has reached 2,000 participants! This would not have been possible without the support of this amazing community. Together, you have not only contributed over 1 million data points that can help drive new research, but also actively engaged with us in the design and continued growth of this community resource.




Some of the things we’re most proud of from 2020 are:

• Reaching ambitious enrollment targets within six months of launch
• Partnering with organizations all over the world to initiate a global data collaborative
• Opening registrations for long COVID so we can better understand similarities and differences with ME/CFS

And we’re just getting started. We have lots of exciting plans for 2021 that we want you to be part of. If you haven’t signed up yet for this transformative research project, we need you! Register today and ask a friend or family member without ME/CFS to join too - controls are just as important.


Click here to learn more and sign up