Closed UK: DecodeME updates, was recruitment thread.

I got my mail saying they'd been successful yesterday too (sample sent October). I wondered if there's sometimes a lag between the samples actually being analysed and batches of email going out. Anyway, it's good to know I can now tick it off my stuff-that's-not-yet-resolved list!
 
Communications and Engagement Manager
The University of Edinburgh - CMVM / MRC Human Genetics Unit
Location: Edinburgh
Salary: £36,333 to £43,155
Hours: Full Time
Contract Type: Fixed-Term/Contract
Placed On: 23rd March 2023
Closes: 20th April 2023
Job Ref: 6939

Fixed Term Contract until August 2024

We are looking for a skilled communications professional to lead on the delivery of top quality, creative and engaging content and recruitment of participants for the DecodeME project, the world’s largest study of ME/CFS.

The Opportunity:

The DecodeME research partnership is a collaboration between researchers and people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), carers and the public.

The Communications and Engagement Manager will be a key component of this team at the University of Edinburgh’s Institute of Genetics and Cancer.

This role will be responsible for advising on and delivering DecodeME’s strategic priorities, specifically on how to engage and communicate with study participants. This role will create and implement a communications strategy, create content and manage diverse study promotion channels and activities, working side-by-side with PPI (patient and public involvement) members, charities, and UoE Comms and PR teams.

https://www.jobs.ac.uk/job/CYM399/communications-and-engagement-manager
 
I looked for a short sentence explaining that severely affected are included in DecodeME.

Brain-fogged, it took me a while to note that in the FAQs, providing the sample is under a different column than signing up, where only the questionnaire is mentioned.

Still didn't find a sentence that had the info I was looking for in the FAQs but from different other places on the website now hope it's OK to word it like this:

"Also severely affected can take part -- from home, even while lying in bed. If you're very severely affected, you might need someone to help fill in the questionnaire and if you're housebound, you need someone who takes the Freepost with your sample to an ordinary postbox to send it."

Could someone who has participated let me know if this is accurate?

Also any suggestion on better wording would be highly appreciated.

@Andy tagging you to suggest to the DecodeME team to add a first sentence to the FAQs also in the signing up column along the lines that yes, both filling in the questionnaire and providing the sample is designed to include severely affected. And after the details about the questionnaire, add under which columns more details about the sample (spit kit) can be found?

Also if it's correct that you can take part while lying in bed, perhaps explicitly add that?
 
Ariel said:
Does anyone know how long I should wait for a replacement spit kit before contacting them?
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My note that DNA had been extracted took a long time to come. In Feb, I wrote to ask if they had been able to use the sample/say I was willing to repeat it and had a reply straight away saying they were working on the samples, then in mid March had a letter that the DNA had been extracted.

From completing the questionnaire in Sept to receipt of the DNA acknowledgement letter took 5-6 months.

Maybe you already know that you are being sent a second spit kit? If that is the issue, sorry I can't help. My impression is that parts of the process move quickly and others very slowly. Hope that the numbers are building up.
 
Binkie4 said:
Maybe you already know that you are being sent a second spit kit? If that is the issue, sorry I can't help. My impression is that parts of the process move quickly and others very slowly. Hope that the numbers are building up.
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Yes I recently received a message about the same time as everyone else except instead of saying it has been extracted they said they are sending another kit.
 
@MSEsperanza I'll pass your suggestions and observations on to the team.

Ariel said:
Yes I recently received a message about the same time as everyone else except instead of saying it has been extracted they said they are sending another kit.
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As Binkie notes, some parts of our sample system work quickly, others parts not so much. In general, the parts that work quickly are the ones directly under our control, while the slower parts are where we have to rely on organisations such the Royal Mail and the UK Biocentre.

While we are using Royal Mail's small parcel service that is meant to deliver within 48-72 hours, we are seeing delivery delays of up to 5 weeks. So we ask that anybody expecting to either receive a spit kit or paper questionnaire, or confirmation of receipt of a spit kit or paper questionnaire sent back to us, to allow 4 weeks or so. After allowing this time, the best way to chase something up is to email the team on info@decodeme.org.uk.

We appreciate that this sort of length of time is frustrating for all; we continue to try to improve this side of things but unfortunately our options are limited.

And a final note about extracting DNA from the samples. We are seeing an extraction failure rate of approx 10% from all samples, which seems to be similar to that experienced by other GWAS, and can happen for a variety of reasons.
 
Exciting, and relieving, to get to this next step.

"The first batch of DNA from #DecodeME participants is on the way to @thermofisher to begin analysis. Thank you to for all the recent positive messages. It’s great to see this stage of the study get going! #pwME #MECFS There is still time to take part: rb.gy/okh"

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Code: 
https://www.facebook.com/photo?fbid=695948769199886&set=a.128908609237241
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Sorry, I’ve not managed to keep up with this thread. Can someone tell me the latest numbers are on participants?

Is this published someone on the site?

I think this may have been discussed before but has the team considered putting a running total on the site?
 
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Robert 1973 said:
Sorry, I’ve not managed to keep up with this thread. Can someone tell me the latest numbers are on participants?

Is this published someone on the site?

I think this may have been discussed before but has the team considered putting a running total on the site?
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As of January, over 17,000 people had completed their questionnaire and over 9,000 were asked to give a sample. That's the most recent update I know of. For context, they want the DNA of 25,000 total pwME. Not everyone is asked to give DNA, perhaps due to comorbid conditions etc., but the answers from the questionnaire will be the biggest ever survey on ME and contain valuable information.
 
Robert 1973 said:
Sorry, I’ve not managed to keep up with this thread. Can someone tell me the latest numbers are on participants?

Is this published someone on the site?

I think this may have been discussed before but has the team considered putting a running total on the site?
Click to expand...
Redfox has kindly posted the last public update we have made on the participant figures above; I've asked for an update on the current figures and will come back when I have that.

We don't publish a running total on the website. As far as I know it wouldn't be possible to automate it, so it would become another task, albeit a minor one, for our team to process. Unhelpfully I can dimly remember that we did discuss publishing a running total, but can't remember the detail of that conversation; as we didn't action it my assumption was that it was felt that it wasn't a priority for us to implement.

Frankly, we don't get, or otherwise see, many enquiries at all about the numbers participating, so there doesn't seem a substantial need for it. I'm happy to be convinced otherwise though.
 
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