Closed UK: DecodeME updates, was recruitment thread.

Thanks, @Trish. Was it an email or a letter?

 

It will have been an email, so obviously worth keeping an eye on your spam folder as well.

The unhelpful answer to the "how long" question is that an email is sent shortly after the receipt of the test kit at the processing centre is logged on to our system. With disruption caused by the postal strikes obviously this will take longer than it would normally, so if you haven't been notified by this time next week then it could be worth contacting the team to highlight the fact.

 

From Chris Ponting on Twitter

"#pwME: When you register for @DecodeMEstudy & complete its questionnaire I see our numbers [increasing emoji] by 1. Each time, I’m grateful for your donated energy answering Qs or spitting in a tube. Pls keep going. For the best chance of success DecodeME needs 1000s more"

 

Is it possible, when things have got rolling, to have a regular update on numbers still needed, @Andy. Like a fundraiser it may motivate people to go the extra to find others. I have managed to distribute a few flyers. If I had a figure to flag up I think I could politely hassle people on all sorts of neighbourly WhatsApp groups etc.. I know some of them have relatives with ME.

 

Yes, we will start talking publicly about where we are with figures in the future but the when and what form that might take is yet to be decided.

 

It will be interesting to see if it's possible to identify groups who're still missing from the recruitment.

Presumably there's a minority who know about the study but have concerns about submitting DNA, some of whom may still not be amenable even if all their questions were answered. Fair enough.

There are also likely to be patients who think they have ME, who may also be members of ME groups, but are currently disbarred by not having received a formal diagnosis. Also fair enough.

Plus, of course, people who know about it and are willing to take part, but haven't yet done so for a variety of reasons. Hopefully regular reminders will be enough to get them on board eventually.

But are there also people who might participate if only they knew about it or had the support/encouragement? I imagine some minority groups will be underrepresented in recruitment for research projects, and engaging them might need more than information in multiple languages. I also wonder about some over-60s, plenty of whom only use the internet in limited ways because computers haven't been part of their working lives. They might read or hear about it in the mainstream media, but how easy is it for them to find out more if they're not online? Print media sometimes assumes anyone interested in a topic can Google it, you don't often see phone numbers (which is still the preferred means of contact for many older people). I guess it might be too expensive or labour intensive to try and reach some of them, though.

 

Yea, I'm currently chasing down a diagnosis pretty much solely so I can take part in DecodeME. Any other tangential benefits of having a diagnosis will be appreciated, but tbh I don't think there are any!

 

I really hope I’m wrong but, based on past petitions etc, I’ve always felt that it might be relatively easy to get to up to about 15k (maybe fewer depending on % of exclusions) but that getting the extra 5k+ could be hard work.

I agree that having a running total could be helpful. Is there a second wave of media coverage planned?

 

Another issue is making the title obvious enough that you know if it is that one you've signed or not. There are many going around that are slightly different but on similar broader topics. And some seem to circulate for a long time.

DecodeME is a bit more memorable.

I liked the independently done video that was on here - but don't do twitter. that's not a bad one to circulate as it emphasies the 'trust' bit ie done by official orgs, how data is used etc.

 

With this person's permission, I have now posted this on Facebook in case anyone wants to share it there

Code:

https://www.facebook.com/watch/?v=508816274201948

 

Yes, or at least there will be a second concerted attempt to get the media to cover it. The challenge will be figuring out the 'hook' that will be most successful in making our 'story' interesting enough to the media that they run with it but we are working on that.

Wonderful, thank you Tom.

 

Could DecodeME get PwME from this new UK health study with 3 million participants?

 

Possibly. Going solely by that article, I would imagine it would depend on when it would be possible to ask their participants about taking part in DecodeME.

Digging further, the invitations are being sent via NHS DigiTrials, https://digital.nhs.uk/services/nhs-digitrials, which "plays an important role in clinical trials. We provide secure data about people's health and care to researchers. They must go through a strict approvals process before receiving any data. ". I'm not sure how their study qualifies as a clinical trial, it might be that we could investigate that as a recruitment route.

 

We had a medical ethics Grand Round on a similar project for newborn babies. These big projects are being set up because the have a negative cost for the NHS. Industry is paying the government to provide data to be used for commercial purposes. That might be OK but there are aspects to the consent process that looked very worrying.

The primary aim of projects like this may well be to patent information that might otherwise be free for all. That worries me significantly.

 

That was my first thought when I saw it in the paper this morning. I decided I was being absurdly paranoid ... it's good to know otherwise.

 

I have sent my tube of spit. Used the tracking number to order a postie pickup online and handed it over at the front door. Easy as pie.

 

Fantastic, thank you. We are between two stones with the postal collection service, as we were advised by Royal Mail that it would come down to the individual postie whether they would be happy handling the package or not. So we can't really highlight it as a service that people might use, in case the postie refuses it, but we can't really advise against using it either as the postie, as in your case, might well be happy to take it.

 

Well I have a helpful postie crew where I live (in a small Northamptonshire town) and I often use a reliable paid for collection service where they even bring the label! (If you buy the postage online as well.)

The Decode ME return is free though using this service as the label they send with the spit kit has a Tracked 48 service tracking number on it and the online form linked below allows you to enter this tracking number and order the pickup free of charge.

Its probably best to register and login and my guess would be the weborder system will be able to decide based on your address whether a pickup is possible.

I could understand if in some remote rural areas this kind of service might not available but I have never had a problem. I use it all the time to send birthday cards etc.

https://send.royalmail.com/collect/youritems

I have also heard that some posties are very obliging and will take things without having to order a pickup if you can catch them on the doorstep. But using this service they will ring my doorbell, which helps a lot.

 

Thanks, that's helpful info for us to have.

 

My sample went off at the local post office a week ago. No problems.

@Andy- there are quite a few comments below the facebook post from today. I have commented where I can but there was a question about how long after covid the sample could be taken. I wasn't sure but it might be good to answer.
I think the mail strike last week may have delayed samples. Several were worried at not having had an acknowledgement.