DecodeME - UK ME/CFS DNA study underway

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Andy said:
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.
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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.
 
Andy said:
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.
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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
 
Sasha said:
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 ?
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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.
 
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
 
Andy said:
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
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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.
 
Sasha said:
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?
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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.
 
Andy said:
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.
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I received mine at 12.08. Is there any reason The London School of Hygiene & Tropical Medicine will no longer be involved?
 
Tia said:
Is there any reason The London School of Hygiene & Tropical Medicine will no longer be involved?
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From https://www.decodeme.org.uk/faqs/#latest-updates
Why have there been changes to the Partnership?

After careful consideration, in the interests of delivering the study aims most effectively, it was decided that the University of Edinburgh should lead the recruitment and management of people participating in the study. It is supported by the Patient and Public Involvement Group.
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