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DecodeME - UK ME/CFS DNA study underway

Discussion in 'BioMedical ME/CFS News' started by NelliePledge, Jun 23, 2020.

  1. Andy

    Andy Committee Member & Outreach

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    We are still working on a lot of the detail and will be until we open recruitment in March 2021, so might be worth waiting for the moment. Alternatively, starting the conversation with him now could be useful - perhaps an email pointing the study out to him, stressing how important you feel it is and asking him what support he will be able to give to it?
     
  2. Kitty

    Kitty Senior Member (Voting Rights)

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    Thank you – as he's a fairly recent appointment and probably still getting to grips with the brief, it might be best to keep our powder dry. Provided he stays in post, I could contact him in early February and give him the heads-up so he can be ready to say something about it.

    It's possible he's already aware, of course, if he knows someone with ME; but I suspect news of the study hasn't yet made a big impact beyond patients and their immediate circles of family & friends, as there's so much else going on.

    I'll put a note in my calendar to remind me. :emoji_thumbsup:
     
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  3. Andy

    Andy Committee Member & Outreach

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    Chronic fatigue syndrome may hold keys to understanding post-Covid syndrome: David Tuller and Steven Lubet July 21, 2020
     
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  4. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    At the CMRC 2020 conference Kristian Spreckley of the UK Biobank talked about their history and capabilities and how they will facilitate the UK DecodeME project. This was in March, before the award of the project and the project had it's current name.

    I enjoyed watching it, not too technical, and I grasped how the DecodeME team cleverly utilise existing infrastructure to make their project happen. There really has been an awful lot of planning up front on this project.

    Code:
    https://youtu.be/eOMXWIivkRI
     
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  5. Andy

    Andy Committee Member & Outreach

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  6. Andy

    Andy Committee Member & Outreach

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  7. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Thank you for the update, @Andy .

    Some suggestions:

    It would be extremely helpful for me to have a (very) short text on the DecodeME website that could be copied and used as template for an e-mail asking friends and family to circulate the call for getting involved in the study / declaring interest in participation.

    I'm thinking of an e-mail text that can be easily forwarded without needing introductory remarks or any additional explanation.

    Also, a printable leaflet for download would be nice.

    And how about a "DecodeME in the news" section on the website?
     
  8. JemPD

    JemPD Senior Member (Voting Rights)

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  9. Kitty

    Kitty Senior Member (Voting Rights)

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    I agree, once the design assets are ready, it will be easier to circulate the news outside of social media or personal contacts. In situations where I can't just forward a digital link, I don't want to use my own wording – it has to be considered so carefully, and I think it would be better to wait for the project materials to be produced.
     
  10. Andy

    Andy Committee Member & Outreach

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    Thanks for the suggestions, I'll pass them on.

    The MEA has a leaflet about the study that can be downloaded via this page, https://meassociation.org.uk/2020/07/free-leaflet-decodeme-the-largest-ever-genetics-study/, or directly from https://meassociation.org.uk/wp-con...st-Ever-Genetics-Study-Launched-July-2020.pdf, which might be the sort of thing you are thinking of.

    And in regard to a "DecodeME in the news" section - the study doesn't officially start until September, so is not yet in receipt of any funds, so all the current efforts are actually done voluntarily or before any moneys can be paid to anybody, so I believe our intention is to have a more regularly updated section along the lines of "In the news" as you suggest once we actually have someone in a paid position to be able to do it.
     
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  11. Simbindi

    Simbindi Senior Member (Voting Rights)

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    It would be great to have a template letter patients could send to their GP practice. There are notice boards up at the surgery for A4 posters. Additionally, given the Covid-19 problems, I would be happy to ask them to put it in their electronic news letter when the research is in the recruitment phase.
     
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  12. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    It's amazing what you've achieved already with voluntary work only, in particular the splendid website. Again, thanks to all involved.

    All my suggestions are for the time when your team will have the resources to consider them.

    Another one of that category, for the website:

    In the "About Us" section I would find it helpful to have links added to the mentioned institutions/ organizations; if possible, also links added to the logos of the involved organizations on the main page (a partnership between....) -- so that the logos are clickable.
     
    Last edited: Aug 3, 2020
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  13. Andy

    Andy Committee Member & Outreach

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  14. Andy

    Andy Committee Member & Outreach

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  15. Andy

    Andy Committee Member & Outreach

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  16. NelliePledge

    NelliePledge Moderator Staff Member

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    Well done @Andy and the DecodeME team. That’s amazing to get so many people interested even before the project starts.
     
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  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  18. Andy

    Andy Committee Member & Outreach

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  19. Andy

    Andy Committee Member & Outreach

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    DecodeME email and website update.

    Email
    Screenshot 2020-08-26 at 14.39.54.png

    Website update, which expands on the above, https://www.decodeme.org.uk/funding-announcement-gets-a-big-response/

    If you are signed up and haven't seen the email by tomorrow, please check your spam folder. If it's not there, I'd suggest that the best next option would be to try to sign up again. Finally, if you haven't received it and can't sign up again, let me know below - we may not be able to solve individual problems but it's useful for us to know.

    Remember, once recruitment opens we will need everybody to sign up seperately to that, so you won't miss out in the chance to take part even if you don't get these updates sent to you.

     
    Last edited: Aug 26, 2020
  20. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Not sure why media link not working but it says today is the start of DecodeME funding as it’s 1 September!

     

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