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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

    Messages:
    21,810
    Location:
    Hampshire, UK
    So a bit more of an update.

    In the region of 6%, so approx 1,200, emails sent with the last update bounced, or in plain English were unable to be delivered. This was across many different email providers, and while there was a large number of BT Internet email accounts affected (part of the email delivery system was temporarily blacklisted in error by BT Internet - this is now resolved) we can't know the reason for each individual case.

    As I've said before, those who contacted me with email address are confirmed as being on our contact list. There aren't any plans to re-send the last update, but it was simply a general request for people to indicate their contact preferences, and this survey can be taken by going here, https://www.surveymonkey.co.uk/r/S9ZKWYH

    While some sort of an account management system would be useful to have, it is something that would need an amount of work, and hence DecodeME study budget, spent on it, and I am not convinced that there is the justification for that.

    Worth noting that the contact list system we are using is not the same system as will handle the recruitment and cohort-building side of things, that will be a far more 'bespoke' system.
     
    cfsandmore, Nellie, Legend and 6 others like this.
  2. Kitty

    Kitty Senior Member (Voting Rights)

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    5,053
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    This is quite common with mailing lists. Certain mail servers can be set to bounce incoming messages that are tagged as spam – and some users may not even be aware that the setting exists – so it's not always the case that people have actually changed their addresses.

    At some point, might it be worth adding the sender address to one of the social media campaigns and suggesting people add it to their safe list? Not everyone will know how (or have the energy) to do this, but it may improve delivery a bit. There are articles such as this one that explain how to do it for a number of common email providers, but I'm not sure how many users would go as far as finding out.

    https://www.getyouonline.co.uk/news/how-to-add-an-email-address-to-a-safe-sender-list
     
  3. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,769
    Location:
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    I just went to look at DecodeME's Twitter account and got a message reading, 'Caution: This account is temporarily restricted. You’re seeing this warning because there has been some unusual activity from this account. Do you still want to view it?'

    Is there a problem, @Andy ?
     
  4. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    Not that I'm aware of. I'll see what I can find out.
     
    Kitty, Sasha, Robert 1973 and 2 others like this.
  5. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

    Messages:
    3,495
    Location:
    Belgium
    Seein the same issue:
    upload_2020-11-28_11-55-41.png
    If you click on 'view profile' everything is fine again
     
  6. Andy

    Andy Committee Member

    Messages:
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    Location:
    Hampshire, UK
    Twitter wants us to confirm that the account is controlled by a human, for whatever reason. Once the member of the team whose mobile phone is registered to the account can confirm the code sent to it, all should be back to normal.
     
  7. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
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    Latest update (which has gone out via email and various other channels) and can be seen here, https://www.decodeme.org.uk/partnership-update/


    We’d like to update you on some changes to the Partnership team who are leading and delivering the DecodeME study.

    All aspects of the study, including recruitment, will now be led and delivered by the University of Edinburgh. The Edinburgh team has considerable expertise in managing studies that need large-scale recruitment, and so the required scientific standards are maintained. The London School of Hygiene & Tropical Medicine will no longer be involved.

    This decision is fully supported by remaining members of the Partnership, including the Patient and Public Involvement Steering Group.

    In all other aspects, DecodeME continues as planned and the study’s Management Group and funders (the Medical Research Council and National Institute for Health Research) are confident that the objectives for the study will be achieved.

    We will continue to provide regular updates on our website and by email to everyone who has requested updates. If you haven’t yet signed up for updates, you can do so here.

    Meanwhile, we continue to seek people with ME/CFS to register their interest in this vital study. You can help us make this project a success:

    If you have ME/CFS and haven’t yet registered your interest in taking part in the DecodeME study, please do so now.

    If you know someone with ME/CFS who might not have registered yet, please let them know about the study.

    Best wishes,
    The DecodeME team
     
    Michelle, shak8, Legend and 12 others like this.
  8. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    1,580
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    Just a note...this email went to my junk email folder. It might be worth asking those who have signed up to add an email address to contacts.
     
  9. Kitty

    Kitty Senior Member (Voting Rights)

    Messages:
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    Location:
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    I re-registered with a different address, after the last newsletter failed to reach me (it wasn't caught by the spam filter). I received this one at both addresses, so all seems to be functioning well this time.
     
  10. Sasha

    Sasha Senior Member (Voting Rights)

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    I didn't receive anything yet and I only have one email address and there's nothing in my spam box.

    Should I be concerned?
     
    Invisible Woman and Andy like this.
  11. Trish

    Trish Moderator Staff Member

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    Mine came into my main emails, which is reassuring, given past glitches.
     
    Invisible Woman, MeSci and Andy like this.
  12. Andy

    Andy Committee Member

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    I believe that the update was scheduled to go out at 12pm, so at this time, only 30 mins have gone by. I'm not sure if they are sent all at once, or they are sent in batches, and delays can potentially be introduced at the receiving end. Cutting to the chase, please wait a while longer to see if it comes through. A general tip, as was suggested by @InitialConditions up thread, if you add info@decodeme.org.uk as a contact in your address book then this will help avoid any 'diverting into spam folder' issues that might occur.
     
  13. Tia

    Tia Senior Member (Voting Rights)

    Messages:
    475
    I received mine at 12.08. Is there any reason The London School of Hygiene & Tropical Medicine will no longer be involved?
     
    Sarah94, Invisible Woman and Andy like this.
  14. Andy

    Andy Committee Member

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    From https://www.decodeme.org.uk/faqs/#latest-updates
     
  15. janice

    janice Senior Member (Voting Rights)

    Messages:
    132
    Location:
    U.K.
    I received my e-mail at 12:10 to my main e-mail place.
    So all good:thumbup:
     
  16. Sasha

    Sasha Senior Member (Voting Rights)

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    Still nothing for me...
     
    Invisible Woman, Kitty and Andy like this.
  17. Andy

    Andy Committee Member

    Messages:
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    All is now resolved.
     
  18. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,769
    Location:
    UK
    Still nothing, three and a half hours in...
     
    Invisible Woman likes this.
  19. Andy

    Andy Committee Member

    Messages:
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    Hampshire, UK
    I can ask someone to check on it if you can send me an email at andy@s4me.info
     
    Invisible Woman likes this.
  20. JemPD

    JemPD Senior Member (Voting Rights)

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    I was initially a bit concerned by this development.... Are you happy with this @Andy ?
     
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