DecodeME - UK ME/CFS DNA study underway

[Andy]

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

Simply, yes. I can't really add anything to the answer in our FAQ, that the decision was taken in order to give us the best chance of achieving the goals of the study, and that the decision was supported by the PPI Steering Group.

 

[Sasha]

I can ask someone to check on it if you can send me an email at andy@s4me.info

Thanks but don't want to provide the email address I registered with.

But if I haven't got a message yet, I suspect others won't have - might be worth checking if a chunk of people have been missed off.

 

[MeSci]

Thanks but don't want to provide the email address I registered with.

But if I haven't got a message yet, I suspect others won't have - might be worth checking if a chunk of people have been missed off.

I've had mine. For some reason I didn't receive the last one, so signed up again as instructed.

 

[Andy]

Just a note that I'm happy to enquire for anybody who hasn't received an email, however, sometimes the answer will be that there is no explanation of why you haven't received it. Efforts are made by email providers to limit the amount of spam that you receive, and sometimes they decide incorrectly that emails from contact lists such as ours are spam and block them even before they get to your computer. If this is the case then, typically, all we will be able to tell you is that the email was sent.

 

[Adrian]

Just a note that I'm happy to enquire for anybody who hasn't received an email, however, sometimes the answer will be that there is no explanation of why you haven't received it. Efforts are made by email providers to limit the amount of spam that you receive, and sometimes they decide incorrectly that emails from contact lists such as ours are spam and block them even before they get to your computer. If this is the case then, typically, all we will be able to tell you is that the email was sent.

Emails can bounce from time to time - they may have a log of any bounces which could be resent. There can also be delays in the system sometimes I wonder if bulk emails get delayed.

One of the things I have noticed here is that one ISP bounces a lot of emails from us. Other bounces seem to be occational. So it could be one particular email provider.

@Sasha would you mind saying who your email provider is (e.g. gmail or BT, outlook, etc) as it may be useful to see if others using the same provider have got an email.

 

[JemPD]

Simply, yes.

Great, thanks, thats good enough for me

 

[Sasha]

@Sasha would you mind saying who your email provider is (e.g. gmail or BT, outlook, etc) as it may be useful to see if others using the same provider have got an email.

It's TalkTalk.

 

[wigglethemouse]

I think Luis Nacul was co-principle investigator. Does this mean Chris Ponting is now sole principle investigator? That would make sense given Nacul moved to Canada and is no longer based at CureME Biobank.

Also, I believe at the beginning there was talk that the Cure ME team may be involved in validating a percentage of questionnaires to confirm diagnosis. What was the outcome of that?

I personally like one center responsible and doing the management as that means clear ownership of the project. Good luck.

 

[Jonathan Edwards]

Luis Nacul is still very much part of the LSHTM Unit as I understand it.
However, it seems that the original collaborative plan did not prove workable.
I don't think going over the reasons would help anyone.
The important things are that the project is going ahead and both units deserve full patient support for future work.

 

[Binkie4]

@Andy - I don't have an email either. Am using microsoft outlook.

 

[Andy]

@Andy - I don't have an email either. Am using microsoft outlook.

Thanks. Please either send me an email at andy@s4me.info or just tell me here the last part of your email address (i.e. @gmail.com, @yahoo.com, etc).

 

[Binkie4]

@hotmail.com

thanks.

 

[Andy]

Does this mean Chris Ponting is now sole principle investigator?

Yes, that's correct.

Also, I believe at the beginning there was talk that the Cure ME team may be involved in validating a percentage of questionnaires to confirm diagnosis. What was the outcome of that?

That didn't make it into the accepted application.

 

[FMMM1]

Yes, that's correct.


That didn't make it into the accepted application.

Does anyone know when they are due to start requesting samples? OK it may be difficult to be definitive i.e. due the pandemic.

 

[Andy]

Does anyone know when they are due to start requesting samples? OK it may be difficult to be definitive i.e. due the pandemic.

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

There may be a short delay to the recruitment start date which was planned in March 2021. We will update our website if there is a delay and email people who have signed up for updates.

 

[Mithriel]

I trust Chris Ponting, he seems to have our interests at heart but the move to the University of Edinburgh worries me as it was the home to Michael Sharpe and still harbours Jon Stone. Their views are very pervasive.

 

[Trish]

Universities are huge institutions. The bad actions of people in one department should not reflect on the good work of others. I'm not at all worried about Sharpe and Stone's association with Edinburgh University. They are irrelevant.

 

[Andy]

Universities are huge institutions. The bad actions of people in one department should not reflect on the good work of others. I'm not at all worried about Sharpe and Stone's association with Edinburgh University. They are irrelevant.

Just to confirm this, Wikipedia reports that Edinburgh University has 4589 academic staff and 6107 administrative staff.

 

[Nellie]

@Andy
Me too, @mac.com
Thanks

 

[Andy]

Feedback from our communications team regarding non-delivery of emails.

"According to the report on the [latest] email, we're not facing any delivery issues relating to a particular email provider like we faced last time with btinternet. Hotmail.com addresses (3,014 contact) have an overall bounce rate of 0.13% [so 4 emails] and hotmail.co.uk addresses (2,154 contacts) have an overall bounce rate of 0.05% [so 1 email]. We don't have enough sign-ups with talktalk addresses to provide specific info on them but the 'other' section isn't notably high on bounce rates either.

What I've found so far when people have come directly to us to ask why they've not received emails is that the 2 most common reasons have been either 1) the typed their email in incorrectly, or 2) they didn't opt-in to emails when they registered their interest in the project.

I'd suggest to the people on the forum to contact info@decodeme.org.uk and I'll check their emails."

ETA: Corrected the number of emails, because math is hard (apparently).