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DecodeME - UK ME/CFS DNA study underway

Discussion in 'ME/CFS research news' started by NelliePledge, Jun 23, 2020.

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  1. Andy

    Andy Committee Member

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  2. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Just a reminder....
    Could also be helpful with regard to journalists interested in after effects of Covid-19, to make them aware of ME and that some good research going to happen.

    I realize that things in 2020 didn't go as planned, especially due to the pandemic, so really just a reminder in case it got lost.

    Edited for clarity.
     
  3. Andy

    Andy Committee Member

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    And I've sent it on.

    We now have an updates page, https://www.decodeme.org.uk/updates/
     
    sebaaa, Simon M, ahimsa and 6 others like this.
  4. Andy

    Andy Committee Member

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    Code:
    https://twitter.com/DecodeMEstudy/status/1349325346253008902
    https://twitter.com/user/status/1349325346253008902
     
    sebaaa, Kitty, Binkie4 and 13 others like this.
  5. Andy

    Andy Committee Member

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    Transcript, or at least the first part, of the recent webinar by patient and advocate Anna Redshaw.
    https://the-slow-lane.com/2021/01/20/decode-me-winter-webinar-part-1/
     
    Amw66, sebaaa, MEMarge and 3 others like this.
  6. Sasha

    Sasha Senior Member (Voting Rights)

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    This is great - George Monbiot provided a link to DecodeME in his article today about Long Covid / ME.

    Are sign-ups going up, @Andy?

    Edit: Fixed link.
     
    Last edited: Jan 21, 2021
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  7. Andy

    Andy Committee Member

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    I think something went wonky with your embedded link, the article in question is on the forum here, George Monbiot: UK journalist, writing about ME/CFS and long covid - Guardian article 21/1/21

    Other members of the DecodeME team can look at numbers of sign-ups and amount of 'traffic' to the website, so I've asked them to do so for me.
     
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  8. Andy

    Andy Committee Member

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    It looks like the article has provided a boost to sign-up figures in the region of several hundreds compared to our daily average. While that might not look much, DecodeME was more mentioned in passing in the context of the whole article, so it's probably not a bad result overall.
     
    ukxmrv, EzzieD, Michelle and 11 others like this.
  9. Andy

    Andy Committee Member

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    Code:
    https://twitter.com/DecodeMEstudy/status/1352564044583071744
    https://twitter.com/user/status/1352564044583071744
     
    Amw66, JemPD, Binkie4 and 19 others like this.
  10. Andy

    Andy Committee Member

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    Post weekend update on figures following George Monbiot's article; around 1,000 visits to the website and around 600 new sign ups, which is way above our average, unsurprisingly.
     
    cfsandmore, EzzieD, sebaaa and 17 others like this.
  11. Andy

    Andy Committee Member

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    This has blog has been sent out via email to those on the list, with the additional info
    Code:
    https://twitter.com/DecodeMEstudy/status/1354036481057288195
    https://twitter.com/user/status/1354036481057288195


    Code:
    https://www.facebook.com/decodeMEstudy/posts/278860783570798


    As always, shares and re-tweets gratefully appreciated by the DecodeME team.
     
    cfsandmore, Kitty, Hutan and 7 others like this.
  12. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Only able to skim ATM -- but seems to be a timely email / Tweet/ post. :thumbsup:

     
    Last edited: Jan 26, 2021
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  13. Sasha

    Sasha Senior Member (Voting Rights)

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    Excellent email!

    Mine has some slight odd formatting in that the line spacing increases after the 'Read the blog here' button.

    No big deal, obviously, but might be worth keeping it in mind for next time.
     
    Kitty and Andy like this.
  14. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    I'm a bit worried that the numbers have plateaued at or around 20,000 since the initial wave of sign-ups. My understanding is there needs to be significantly more than 20,000 registered due to numbers reducing during screening. Is there a plan to try and ramp this number up?
     
    Last edited: Jan 26, 2021
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  15. Andy

    Andy Committee Member

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    Simply, yes. There are plans for advertising of various sorts, PR efforts, continued engagement, and the patient community itself can play a big role. Also bear in mind that we are funded for 4 years, so while we would very much like to reach our recruitment target far earlier, we have time to run a lengthy recruitment campaign.
     
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  16. Andy

    Andy Committee Member

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    Amw66, MEMarge, Legend and 2 others like this.
  17. Kitty

    Kitty Senior Member (Voting Rights)

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    Hopefully, being able to enlist the help of GPs and ME/CFS clinics when formal enrolment begins will help to boost the numbers. There must be patients who've never engaged with charities, groups, or online advocacy, or who have done in the past but drifted away because their health declined or they got tired of it. They may be unaware of the project – the fact that several hundred people signed up for further info after George Monbiot's article hints at this too.
     
  18. Andy

    Andy Committee Member

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    Covid willing, of course. Will also depend on whether the clinics survive the probable change in the guideline.
     
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  19. Kitty

    Kitty Senior Member (Voting Rights)

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    Indeed! I wonder if it would be worth talking to people (if no-one in the team knows already) with a knowledge of how general practice admin works?

    For instance, might it be possible for a practice administrator or manager to extract a list of records tagged with ME or CFS from the patient database? If so – or if it might be possible in some practices – it's worth considering whether it'd be allowable to approach them as well as the head of practice. If the latter decides that patients can be notified actively (as opposed to just sticking up a poster in the waiting room), the administrator is likely to be the staff member asked to do the work anyway.

    I don't know much about the potential methods of communication or the protocols, to be honest – just that obviously, the more staff members who see the info, the more likely it is that a key individual is reached who's willing to put in a bit more effort because of a personal interest.
     
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  20. Kirsten

    Kirsten Established Member (Voting Rights)

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    I don't know if it's just in Scotland, but we have a thing called NHS SHARE ( https://www.registerforshare.org/ ) where you can sign up to agree to allow researchers access your anonymised coded data to see if you are suitible for their studies and then you get contacted to ask if you would consider taking part. Might be worth looking into?
     
    cfsandmore, Amw66, Kitty and 3 others like this.
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