1. Guest, the 'News in Brief' for the week beginning 10th May 2021 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 when energy allows)

    Messages:
    12,927
    Likes Received:
    93,395
    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
    Snow Leopard, FMMM1, Hutan and 9 others like this.
  2. Trish

    Trish Moderator Staff Member

    Messages:
    32,239
    Likes Received:
    153,240
    Location:
    UK
    Sounds really good. Solve do seem to be a very effective organisation, and great at collaboration.
     
  3. Andy

    Andy Committee Member (& Outreach when energy allows)

    Messages:
    12,927
    Likes Received:
    93,395
    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 when energy allows)

    Messages:
    12,927
    Likes Received:
    93,395
    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 when energy allows)

    Messages:
    12,927
    Likes Received:
    93,395
    Location:
    Hampshire, UK
    FMMM1, Simon M, Simone and 3 others like this.
  6. Andy

    Andy Committee Member (& Outreach when energy allows)

    Messages:
    12,927
    Likes Received:
    93,395
    Location:
    Hampshire, UK
    Webinar is now available on YouTube
    Code:
    https://youtu.be/Hc03M-lM6FE
     
  7. Ravn

    Ravn Senior Member (Voting Rights)

    Messages:
    1,359
    Likes Received:
    11,615
    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 when energy allows)

    Messages:
    12,927
    Likes Received:
    93,395
    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 when energy allows)

    Messages:
    12,927
    Likes Received:
    93,395
    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."
     
    MEMarge, ahimsa, Michelle and 4 others like this.
  10. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    6,224
    Likes Received:
    50,511
    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 when energy allows)

    Messages:
    12,927
    Likes Received:
    93,395
    Location:
    Hampshire, UK
  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    6,058
    Likes Received:
    49,751
    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/
     
    Last edited by a moderator: Dec 19, 2020
    MEMarge, Simbindi, Hutan and 6 others like this.
  13. Hutan

    Hutan Moderator Staff Member

    Messages:
    13,450
    Likes Received:
    55,444
    Location:
    New Zealand
    From the Solve M.E. website:
     
    MEMarge, Dolphin, Simbindi and 3 others like this.
  14. Andy

    Andy Committee Member (& Outreach when energy allows)

    Messages:
    12,927
    Likes Received:
    93,395
    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 when energy allows)

    Messages:
    12,927
    Likes Received:
    93,395
    Location:
    Hampshire, UK
  16. Andy

    Andy Committee Member (& Outreach when energy allows)

    Messages:
    12,927
    Likes Received:
    93,395
    Location:
    Hampshire, UK
    Start of Twitter thread.
    Code:
    https://twitter.com/YouMeRegistry/status/1311693911736438786
     
    ahimsa, cfsandmore, Simon M and 4 others like this.
  17. Andy

    Andy Committee Member (& Outreach when energy allows)

    Messages:
    12,927
    Likes Received:
    93,395
    Location:
    Hampshire, UK
    [​IMG]

    Code:
    https://twitter.com/YouMeRegistry/status/1314234148450709504
     
  18. Andy

    Andy Committee Member (& Outreach when energy allows)

    Messages:
    12,927
    Likes Received:
    93,395
    Location:
    Hampshire, UK
    Latest email from Solve.

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

    [​IMG]

    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!
     
    ahimsa, cfsandmore and Trish like this.
  19. Andy

    Andy Committee Member (& Outreach when energy allows)

    Messages:
    12,927
    Likes Received:
    93,395
    Location:
    Hampshire, UK
    Code:
    https://twitter.com/YouMeRegistry/status/1318288344615444480
     
  20. Andy

    Andy Committee Member (& Outreach when energy allows)

    Messages:
    12,927
    Likes Received:
    93,395
    Location:
    Hampshire, UK
    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.


    [​IMG]

    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
     

Share This Page