1. See the 'News in Brief' from w/c 12th August, by clicking here, Guest.
    Dismiss Notice

Video: Science for ME Q&A with Dr Sadie Whittaker from Solve ME/CFS Initiative, May 2019

Discussion in 'Researcher Interactions' started by Andy, May 9, 2019.

  1. Andy

    Andy Committee Member & Outreach

    Messages:
    7,064
    Likes Received:
    52,484
    Location:
    Hampshire, UK

    The Science for ME forum are delighted to talk to Dr Sadie Whittaker from Solve ME/CFS Initiative about Solve's work, in particular their patient registry, related app and biobank, as well as their Ramsay Award programme, that awards grants to fund much needed research into ME/CFS and which, at time of posting, is open to applications.

    ** Apologies for the audio/video not quite being as good as we'd have liked, we hope that you are still able to enjoy the video regardless **

    Links:
    Solve ME/CFS Initiative - https://solvecfs.org
    Pre-register to the registry - https://solvecfs.org/you-m-e-registry/
    Ramsay Award programme, https://solvecfs.org/smci-ramsay-award-program/
    Apply for an award, https://solvecfs.org/applying-for-an-award/

    ETA: @Sly Saint has kindly created a transcript, see here https://www.s4me.info/threads/video...-me-cfs-initiative-may-2019.9425/#post-166849.
     
    Last edited: May 22, 2019
  2. Andy

    Andy Committee Member & Outreach

    Messages:
    7,064
    Likes Received:
    52,484
    Location:
    Hampshire, UK
    Screenshots from the app (as also shown at the end of the video).

    Page1.png

    Page2.png

    Page2a.jpg

    Page3.png

    Page4.png
     
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,255
    Likes Received:
    27,657
    Location:
    UK
    on it
     
  4. Andy

    Andy Committee Member & Outreach

    Messages:
    7,064
    Likes Received:
    52,484
    Location:
    Hampshire, UK
    Thank you :heart:
     
  5. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

    Messages:
    320
    Likes Received:
    2,004
    Thanks @Andy. I really enjoy the patient/researcher discussions - it gives a different feel to the normal interviews and presentations, sort of more personable.

    It really resonated with me when Sadie said about the power of the biomedical knowledge within big Pharma. I had heard the same advice from a long long retired VP of R&D in the UK of such a company. He stated that some of the most brightest minds work in big Pharma, and they have the knowledge and experience/history of market and unmarketed drugs for different disease processes.
     
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,255
    Likes Received:
    27,657
    Location:
    UK
    Struggled with this transcript. Can't hear properly/understand some of what Dr Whittaker says.
    I've removed a lot of 'you know's 'right's and 'likes' to try and make it easier to read, but there are a number of places where I couldn't figure out what exactly she was saying. So there are quite a few ??.
    If anyone would like to fill in the gaps I can make the necessary changes.

    Here's what I've done (will have to split over a couple of posts).

    eta: spaces removed
     
    Last edited: May 12, 2019
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,255
    Likes Received:
    27,657
    Location:
    UK
    part 2
    eta: spaces removed
     
    Last edited: May 12, 2019
    mariovitali, Inara, Aroa and 7 others like this.
  8. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    820
    Likes Received:
    5,391
    Slightly off putting that Sadie has the initials SW!

    Seriously though a great interview and transcription. Thank you both.
     
    Barry, oldtimer, Andy and 1 other person like this.
  9. Andy

    Andy Committee Member & Outreach

    Messages:
    7,064
    Likes Received:
    52,484
    Location:
    Hampshire, UK
    In private conversation someone asked if the ability to add user-defined symptoms would be available in the app, and as I didn't know the answer I asked Solve, and as I thought the answer was pretty useful I'm posting it here, with their permission.

     
  10. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    2,143
    Likes Received:
    17,408
    Location:
    Canada
    User-defined data is very sharp double-edged sword. It especially adds to the thing everyone forgets about web apps: moderation, so much moderation.

    It's one of those things that are best for later.
     
  11. theJOYdecision

    theJOYdecision Established Member (Voting Rights)

    Messages:
    98
    Likes Received:
    658
    Location:
    New Zealand
    This biobank initiative is so flippen cool! :thumbup:
     
    MEMarge, Trish and Andy like this.
  12. Andy

    Andy Committee Member & Outreach

    Messages:
    7,064
    Likes Received:
    52,484
    Location:
    Hampshire, UK
    Please like and retweet/share these if you appreciated Sadie and Solve giving us the opportunity for this Q&A.



     
    Amw66, TiredSam, rvallee and 6 others like this.
  13. Andy

    Andy Committee Member & Outreach

    Messages:
    7,064
    Likes Received:
    52,484
    Location:
    Hampshire, UK
    Oops, sorry, just realised I hadn't updated the original post and YouTube video description with the link to @Sly Saint 's transcript - many thanks to Sly Saint for creating that for us.
     
    Aroa, Amw66, MEMarge and 2 others like this.
  14. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

    Messages:
    554
    Likes Received:
    3,919
    What worries me is anyone can use the app, so people misdiagnosed could well use it. Are we just going to end up with nothing meaningful from information gathered? Apologies if this same question has been asked already.
     
  15. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

    Messages:
    320
    Likes Received:
    2,004
    There was a launch presentation by Solve ME/CFS that you probably want to watch to understand more if you haven't seen it already. At 19mins she talks about setup where you complete a diagnostic criteria section, and tick whether the diagnosis has been confirmed by a healthcare provider


    Obviously, where this app is used in clinical studies such as the recently announced Australian ME Biobank I'm sure they will have their own entry criteria, stricter than this App alone.

    I guess the true answer to your question is they won't know for certain until they give it a go.

    If you have further thoughts you could reach out to Solve and ask your questions directly....
     
    obeat, Andy and Sunshine3 like this.

Share This Page