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DecodeME - UK ME/CFS DNA study underway

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

  1. MeSci

    MeSci Senior Member (Voting Rights)

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    No - same one.
     
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  2. Nellie

    Nellie Senior Member (Voting Rights)

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    Me too.
     
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  3. Andy

    Andy Committee Member & Outreach

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    One of the requests I've made of the comms team is that they push out the email with the link to the survey to all people who have signed up since it was sent originally, which should catch everybody who are signing back up.

    I received the original survey email and out of interest I attempted to sign-up again using the same email address to see what would happen. Interestingly, it behaved in the same way that everybody above is describing, thanking me for signing up and sending me two "welcome" emails. I'll feed this back to the comms team as well, as it does cast some doubt on whether the issue is with our email system or with the emails being caught incorrectly by spam filters.

    If there is anybody who has recently signed-up for a second time and is willing to share the email address they used with me, it would help our investigations. Either PM me via the forum messaging system or send me an email to andy@s4me.info.
     
  4. Milo

    Milo Senior Member (Voting Rights)

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    Thank you for receiving and sharing the feedback @Andy. Nothing is ever perfect, and if it’s the only problem this team is encountering, it will just be peachy!
     
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  5. andymick

    andymick New Member

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    It would be very helpful if there was a way (a "My Account" sort of thing) where we could check whether we had signed up. I believe I have signed up twice and still have had no direct communication from these folks - they're beginning to look rather shambolic, and I for one am losing confidence in them.
     
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  6. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Hi @andymick and welcome.

    These communication problems are disappointing, but I think we should remember that this project has only begun to be funded since September, so I should imagine that there is a great deal to sort out, including employing relevant staff etc.

    So much has been done so far by volunteers, including those who are ill with ME or carers. Additionally, charity income has dropped across the board and those involved are likely to have had their resources squeezed at a time when enquiries and demand has risen.

    The start of the "collection of samples phase" is next March, which gives plenty of time for teething troubles with registration etc to get sorted.
     
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  7. Kitty

    Kitty Senior Member (Voting Rights)

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    Have emailed you, @Andy.
     
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  8. Andy

    Andy Committee Member & Outreach

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    Interim update. All those of you who had issues and gave me your email address are definitely in the DecodeME contact database. The team are currently trying to determine if there is any reason on our side of things why you wouldn't have received the email and I'll come back in due course on that.
     
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  9. Andy

    Andy Committee Member & Outreach

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    Code:
    https://twitter.com/DecodeMEstudy/status/1314207697684717569


    Obviously the update above doesn't explain why those who contacted me with other than btinternet accounts didn't receive the latest update, I hope to provide a further update there.

    For those based in the UK and who haven't completed the survey yet for whatever reason, here is the link, https://www.surveymonkey.co.uk/r/S9ZKWYH
     
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  10. Trish

    Trish Moderator Staff Member

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    Does this mean people with btinternet addresses should have received the emails about the survey now? I still haven't.
     
  11. Kitty

    Kitty Senior Member (Voting Rights)

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    Just for info, several local groups that I belong to have trouble with BT internet addresses – it seems to be a particular issue with mailing lists.
     
  12. Andy

    Andy Committee Member & Outreach

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    Honestly, I'm uncertain of the protocol that the comms team uses, it might be that they can't, or won't, make an attempt to re-send - again that is something that I will try to clarify. In the meantime, use the link above to take part, the email contains nothing else of note.
     
  13. Trish

    Trish Moderator Staff Member

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    Thanks, @Andy. I have now done the survey.
     
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  14. MeSci

    MeSci Senior Member (Voting Rights)

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    So have I - through the fog.
     
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  15. Andy

    Andy Committee Member & Outreach

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    https://www.facebook.com/decodeMEstudy/photos/a.144895943633950/224737378983139/


     
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  16. Adrian

    Adrian Administrator Staff Member

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    The things that immediately come to mind are:
    - Via contacts with local support groups. I wonder if a network of people involved with local support groups could be formed such that getting information distributed (assuming a one or two people in each group are active)
    - Via Clinics/GP surgeries etc
    - Via Carer support groups which may get people indirectly - Again there may be people online and involved here who know people involved in carer groups who could help distrubute information.

    Other than that media is probably the way to go which is a lot harder.
     
  17. Andy

    Andy Committee Member & Outreach

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    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.
     
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  18. Kitty

    Kitty Senior Member (Voting Rights)

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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
     
  19. Sasha

    Sasha Senior Member (Voting Rights)

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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 ?
     
  20. Andy

    Andy Committee Member & Outreach

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    Not that I'm aware of. I'll see what I can find out.
     
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