1. Guest, 'News in Brief' for the week beginning 14th September 2020 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

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

Discussion in 'General ME/CFS News' started by Andy, Jan 12, 2018.

  1. Andy

    Andy Committee Member & Outreach

    Messages:
    10,438
    Likes Received:
    75,566
    Location:
    Hampshire, UK
    Preview of the project.
    http://solvecfs.org/wp-content/uploads/2018/01/Chronicle_National_Patient_Registry.pdf

    ETA: Title, and minor formatting corrections.
     
    Last edited: Sep 12, 2019
    FMMM1, Hutan, Kitty and 8 others like this.
  2. Trish

    Trish Moderator Staff Member

    Messages:
    25,731
    Likes Received:
    126,242
    Location:
    UK
    Sounds really good. Solve do seem to be a very effective organisation, and great at collaboration.
     
  3. Andy

    Andy Committee Member & Outreach

    Messages:
    10,438
    Likes Received:
    75,566
    Location:
    Hampshire, UK
    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
     
    Last edited: Sep 12, 2019
    Simone, Hutan, Inara and 5 others like this.
  4. Andy

    Andy Committee Member & Outreach

    Messages:
    10,438
    Likes Received:
    75,566
    Location:
    Hampshire, UK
    Recording of the webinar now available on Facebook here
    Code:
    https://www.facebook.com/SolveMECFSInitiative/videos/2194607644084672/
     
    Simone and adambeyoncelowe like this.
  5. Andy

    Andy Committee Member & Outreach

    Messages:
    10,438
    Likes Received:
    75,566
    Location:
    Hampshire, UK
    FMMM1, Simon M, Simone and 3 others like this.
  6. Andy

    Andy Committee Member & Outreach

    Messages:
    10,438
    Likes Received:
    75,566
    Location:
    Hampshire, UK
    Webinar is now available on YouTube
    Code:
    https://youtu.be/Hc03M-lM6FE
     
  7. Ravn

    Ravn Senior Member (Voting Rights)

    Messages:
    1,093
    Likes Received:
    9,113
    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.
     
    FMMM1, Simon M, MEMarge and 6 others like this.
  8. Andy

    Andy Committee Member & Outreach

    Messages:
    10,438
    Likes Received:
    75,566
    Location:
    Hampshire, UK
    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.

    [​IMG]

    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.

    [​IMG]

    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/
     
    MEMarge, Simon M, ahimsa and 6 others like this.
  9. Andy

    Andy Committee Member & Outreach

    Messages:
    10,438
    Likes Received:
    75,566
    Location:
    Hampshire, UK
    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."
     
    ahimsa, Michelle, Simon M and 3 others like this.
  10. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    4,629
    Likes Received:
    36,099
    Location:
    Canada
    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.
     
    FMMM1, Andy and vsou like this.
  11. Andy

    Andy Committee Member & Outreach

    Messages:
    10,438
    Likes Received:
    75,566
    Location:
    Hampshire, UK
    rvallee, Michelle and Trish like this.
  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,103
    Likes Received:
    42,310
    Location:
    UK
    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/
     
    MEMarge, Simbindi, Hutan and 6 others like this.
  13. Hutan

    Hutan Moderator Staff Member

    Messages:
    9,939
    Likes Received:
    41,852
    From the Solve M.E. website:
     
    MEMarge, Dolphin, Simbindi and 3 others like this.
  14. Andy

    Andy Committee Member & Outreach

    Messages:
    10,438
    Likes Received:
    75,566
    Location:
    Hampshire, UK
    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
     
    Michelle, Kitty, FMMM1 and 9 others like this.
  15. Andy

    Andy Committee Member & Outreach

    Messages:
    10,438
    Likes Received:
    75,566
    Location:
    Hampshire, UK

Share This Page