DecodeME - UK ME/CFS DNA study underway

[Nellie]

No email.

 

[Binkie4]

No email so reregistered with link provided by Andy. Two emails within a minute with links to info about study but no link to a survey.

 

[Andy]

I've had the same message, I think (haven't checked) and I am definitely in the UK! No link to survey.

Was this an additional email to the two welcoming you to the study?

 

[Kitty]

I didn't receive anything (I have been checking the spam folder), so just subscribed again. Two identical emails welcoming me, but nothing yet about the survey.

 

[MeSci]

Was this an additional email to the two welcoming you to the study?

No - same one.

 

[Nellie]

I didn't receive anything (I have been checking the spam folder), so just subscribed again. Two identical emails welcoming me, but nothing yet about the survey.

View attachment 12126

Me too.

 

[Andy]

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.

 

[Milo]

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.

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!

 

[andymick]

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.

 

[MEMarge]

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.

 

[Kitty]

Either PM me via the forum messaging system or send me an email to andy@s4me.info.

Have emailed you, @Andy.

 

[Andy]

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.

 

[Andy]

Please note, for our last two email updates, there has been an issue with emails delivering to btinternet accounts which has resulted in them bouncing.

This issue appears to have now been identified and future emails should deliver without error.

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

 

[Trish]

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

 

[Kitty]

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

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.

 

[Andy]

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

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.

 

[Trish]

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

 

[MeSci]

So have I - through the fog.

 

[Andy]

Numbers update

The total number of people in the UK who have signalled their intent to take part in the DecodeME study currently stands at 20,780, not including people who have signed-up offline.

Thank you to all who have registered so far, be it those of you in the UK or those of you overseas who’re graciously waiting in the wings should you be needed. We’re still some time away from recruitment for the study beginning and it’s great to see such a number get involved in advance of the study taking place.

We’re at a point where we’ve already reached a lot of the ME community who are active online and are now looking at alternative ways to reach as much of the community as possible. Even so, there will still be people online who haven’t come across our posts, yet come across the study, or who haven’t got around to signing up yet.

For this reason, it’s important we all continue to spread the word to people to sign up to the study at decodeme.org.uk

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

 

[Adrian]

We’re at a point where we’ve already reached a lot of the ME community who are active online and are now looking at alternative ways to reach as much of the community as possible. Even so, there will still be people online who haven’t come across our posts, yet come across the study, or who haven’t got around to signing up yet.

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.