Closed UK: DecodeME updates, was recruitment thread.

Hi @Andy . Should I be concerned that, while I have received notification that my sample has been received, I haven't heard that my DNA has been successfully extracted? Just wondering. Happy to redo it if needed.

 

The sample processing centre's operational issues extend beyond booking in samples to completing the DNA extraction process itself. As far as we can tell, everything is just taking far longer than they originally promised us; they have only processed a portion of the backlog that built up so far so our assumption would be that they haven't got to yours yet.

In the unlikely event that they can't extract any DNA from your sample we will let you know officially, in the same way that if they successfully extract it then we will confirm it with you, but I can't currently give you an idea of the likely timescale involved.

 

Great idea to update people when their DNA has been extracted.

 

@Andy - thanks for the reply

 

Can you help promote the study?

We are looking for a couple of people in the UK, who have participated in DecodeME (including donating saliva), and who are willing to appear on film talking about their experience. Ideally you would be someone at the severe end of the spectrum, and/or male and and/or from the BAME community.

The filmmaker is called Jeremy Jeffs. He will call you to ask some questions and will then develop the film script from your responses. He will then visit you at home, ideally with someone else present. The script will be provided on an iPad for you to read, as needed. He will also keep movement to a minimum for energy purposes. He can also do a bit of filming at a time and go away and come back if you need breaks. He understands ME and is very mindful of the physical and cognitive impact of filming and taking part.

Start a private conversation here on the forum or email me at andy@s4me.info if you're interested.

 

To facilitate sharing on Twitter, though her appeal may be for other interviews as well?

 

No, we are describing the same project.

 

I posted my spit test on 17th October and have never received any confirmation of receipt. Is there still a backlog?

 

Hi. If you can email info@decodeme.org.uk, explaining the details then they can check on this for you. As far as we know, the backlog of booking in samples at the processing centre has been cleared so we would have expected this to include your sample, if it had reached the centre. My suspicion is that is has been lost in the post, but the team can check for you.

 

Thanks, Andy.

As still recovering from Christmas family visit travel I hadn't got round to contacting them, but I've had an email this morning from DecodeME saying they hadn't received a sample from me. I've replied explaining the above.

 

Chris and I spoke with Jackie from Long Covid Podcast before Christmas, and it was released today.

Long Covid Podcast 67 - DecodeME - a chat with Prof Chris Ponting & Andy Devereux-Cooke

"Episode 67 of the Long Covid Podcast is a chat with two wonderful people from the Decode ME genetics study – Professor Chris Ponting who is the lead on the study, and Andy Devereux-Cooke, co-founder of the Science for ME forum and also an investigator (PPI) on the DecodeME Management Group.

We discuss the study itself as well as some of the background behind it."

https://www.buzzsprout.com/1835170/11825155

 

Just listened @Andy and also posted it on my facebook page.

Such a very clear exposition. Congratulations to you, Chris and Jackie.

I have been wondering about numbers. Are we recruiting satisfactorily enough?

 

Thanks Binkie, appreciate the kind words.

Are people still participating, by completing the questionnaire and by sending us DNA samples? Yes, and we are grateful to everyone who does. Would we like to see even more people participating? Yes, absolutely.

We will continue our efforts to promote the study ourselves, but everytime that members of the community share the study is incredibly valuable. So if people want links to share, https://www.decodeme.org.uk/portal/ takes people straight to where they can take part or continue their participation, or we have a number of shareable options here, https://www.decodeme.org.uk/ways-to-share/, which include one click sharing to Twitter, Facebook and Whatsapp, suggested messages and a poster, flyer, info sheet and printable leaflet.

 

A member of the community has let us know that they have had success in asking if a local, to them, newsletter would feature the poster advertising the study. Circulation of only 2,000 households but we obviously never know who might see it and all efforts like these add up.

 

Social media post.

"Today our team members Chris Ponting, Claire Tripp and Diana Garcia visited the National Biosample Centre to meet the team processing DNA spit kits for DecodeME.
We're grateful to the team there for showing such genuine interest in the lives of people with ME.
Our team described the lived reality of ME, its severity, and what DecodeME means for science and to our community.
As staff extract the DNA of thousands of participants, it is important to remember that each one is an individual living with this deeply disabling disease."

Facebook: https://www.facebook.com/decodeMEst...FW5Tny9gV6cAb6zUGn2TH1ABCcrPEYc1xYK8FLYxZPEYl

 

It seems my spit kit has either arrived 3 months late or been found somewhere. Just need to wait & see if they can extract DNA from it now.

 

Our latest post on social media:

"If you’re taking part in DecodeME, here’s your gentle reminder to make sure that you’ve completed the steps you need to.

If you’re completing the questionnaire, don’t forget that you can save your progress and return to your responses at a later time. This means you can answer the questions at a pace that works for you. Once you’ve made it to the end of the questionnaire, don’t forget to click submit so we can use your responses for key data analysis.

If you’re submitting a saliva sample, don’t forget to follow the easy-read instructions provided in your spit kit and post it back to us. We’re aware that some people who have been notified that they’re eligible for the spit-kit stage have not received their kits through the post yet, but rest assured you haven’t been forgotten and they will be reaching you in coming weeks."

Facebook: https://www.facebook.com/decodeMEst...X8jsL9RzRzCngMZCk1ibw5gYf2LYw7JF1UVrYEd8HctVl

Twitter

 

I would also add to this

"If you think that you completed the DecodeME questionnaire but didn't answer 30+ questions, then you will have signed up to receive updates from us but not taken part in the study itself."

There are still a considerable number of people who signed up to receive updates from us who haven't even clicked through to complete the study questionnaire. Obviously a number of people, typically carers or family members, wanted updates but didn't intend to take part themselves but we think there is still a significant number of patients yet to take part. We understand that some of them won't have the resources to be able to take part but we are still coming across people who think that signing up for updates was all that they needed to do.