Closed UK: DecodeME updates, was recruitment thread.

Thanks, it looks like another member of our team was able to respond to them.

 

On the subject of notifications of samples being received back, currently we are suggesting that participants allow 3-4 weeks for that confirmation to come through. The main reason for this are the delays that we are seeing with the post, despite using Royal Mail's Tracked 48 service we are seeing that it can take weeks for the sample to be delivered. Sadly this causes frustration all around, especially for some who see the examples of people receiving notification far sooner than they do.

 

Thanks, @Andy.

For anyone else concerned, this advice presumably overrides your Friday advice:

"if you haven't been notified by this time next week then it could be worth contacting the team to highlight the fact."

 

Sadly, yes.

 

I'm actually relieved that this is a common problem - hopefully it means that I don't have to worry so much!

 

I spent a lot of last night going around ME/CFS Facebook groups, skimming their rules and posting it with a covering note. Some of these have huge memberships (one with over 40,000 members).

The post now has 87 shares, a lot of them mine.
Unfortunately my page says the post only has a reach of 1619 currently and the video has 677 views. Some of my image posts reach a five figure amount of people. So disappointing numbers. If people could give it a like where they see it (and even better also comment), that might help it be shown to more people.

I have 3405 followers on Instagram and already it has 514 views so doing a little better, relatively speaking.

 

"SHARE is an NHS Research Scotland initiative. It has been created to establish a register of people, aged 11 and over, interested in participating in health research.

Participants agree to allow SHARE to use the coded data in their various secure NHS computer records to check whether they might be suitable for health research studies. All information is confidential; no-one can access this information without your permission. This information can be incredibly useful when it comes to developing new treatments and cures for a wide variety of health conditions."

https://www.registerforshare.org/

Yesterday an email went to all those who have registered with SHARE and have the appropriate codes in their NHS records, inviting them to participate in DecodeME, as Anna highlights below.

 

DecodeME are part of the latest National Institute of Health Research newsletter, https://mailchi.mp/nihr/bpor-autumn (you will have to scroll quite a bit to find it in the Research News section).

Article on their website, https://www.nihr.ac.uk/news/people-...ds-largest-genetic-study-of-the-disease/31538

 

I believe from asking my local chemist a while back that the posters they display are ones that are provided to them by their head office, and tend to be NHS-based/related. Would it be worth asking any of the chemist groups/HQ whether they might either provide posters or leaflets via their chemists?

 

I received a notice that my spit kit had been received on the 4th November after sending it on Mon 24th Oct.

So that was ten days. Not really 48 hrs is it? More like 240. But from what I read the spit kit can preserve DNA for months so hopefully they should be able to use it.

What they said was.

 

Hmmm, I sent mine three weeks ago and still haven't heard if they've recieved it. I think I'll email them about it.

Edit - Sorry just read Andy's email above, I'll give them another week then email!

 

Yes, unfortunately we are still seeing delays with both the Royal Mail, in delivering spit kits to participants and in then delivering spit kits to the processing centre, and with the processing centre itself, in advising us that kits have been received and in processing those kits (extraction of the DNA and quality control).

The issues with the Royal Mail, seemingly, vary widely for people, with some reporting delivery as expected while some report the opposite; the issues at the processing centre seem to be staffing related. This does mean that we can't really do much about either, as much as we would like to.

So while we understand it will seem an excessive amount of time, we'd be grateful if people could allow four weeks to pass before contacting the team about spit kits they have sent but not yet had confirmation of receipt.

 

I too will give them another week.

 

Latest webinar.

"This webinar will be a chance to hear about how the study is going since its launch in September and have your questions answered.

There will also be a questions and answers (Q&A) section. Please Send us your questions ahead of the webinar by replying to this email.

The webinar is on Wednesday 16th November, 1 - 2pm (GMT) on Zoom and Facebook Live.

There are only 500 spots to watch the webinar on Zoom, but if you don't manage to get one in time, don't worry! You can also watch on Facebook live via our Facebook page or watch the recording when it becomes available on our website.

Register at https://us02web.zoom.us/webinar/register/WN_rdOz3IpNTwKU5bt203PBdg

Join Sonya Chowdhury and Chris Ponting to hear more about the study and some preliminary findings from the questionnaire stage. You will also learn more about how you can help us spread the word and reach more participants.

If you can’t make the webinar, don’t worry. There will be a recording available afterward on our website.

To watch the recording of our last webinar click HERE."

 

'Largest genetic study of ME could finally provide answers around the condition'

"Researchers are now inviting people with ME (myalgic encephalomyelitis), also known as CFS (chronic fatigue syndrome), to take part in what will be the world’s largest genetic study of the condition, which affects more than 250,000 Brits"

https://www.mirror.co.uk/news/health/largest-genetic-study-could-finally-28479324

 

I haven't received acknowledgement despite sending my sample over a month ago, so I've emailed them:

"Dear Decode ME,

I sent my sputum sample to you on 13th September, but haven't received acknowledgement from you.

Could you tell me whether you have received it?

Thank you."

Having just received acknowledgement, I've realised that I put September instead of October! It still took well over a month to get an acknowledgement.

 

Recently either @Tom Kindlon or @Adam or someone posted a link on here to use to promote Decode on facebook. I have searched for it in vain this morning, am very foogy & goofy i cant find it but i am doing my sample today wanted to put something online about it.

Can somebody help me out please if youknow where it is, TIA

 

Do you mean this post Jem? https://www.s4me.info/threads/uk-de...12pm-12th-sept-2022.29463/page-13#post-443690

 

yes @Andy thank you

 

That's great that they included the web address for DecodeME (even though the link isn't live).

I wonder why they ran the story today, rather than at launch?