Closed UK: DecodeME updates, was recruitment thread.

Thanks (small correction: the over 18,000 DNA participants referred to an image shared last week). Disappointing. So less than 16,000 have submitted DNA samples.

 

A factor to consider is that it was only relatively recently that we invited a significant number of additional participants to donate DNA. The "4k haven't returned their spit kit" number therefore potentially includes a range of participants; from those who signed up in Sept last year, to those that had signed up previously but were only invited to donate DNA in June, and those that will have signed up after the publicity surrounding our latest publication in August.

Team members with knowledge of such things have remarked that the questionnaire completion rate and DNA sample kit return rate is noticeably higher for DecodeME than in similar studies in other diseases. So we are very hopeful of receiving a substantial proportion of that 4K in time, but with recruitment coming to a close it is also prudent for us to try to encourage as many as possible to return theirs as soon as they can.

 

Thanks. Just to clarify: as I said before, when I use words like "disappointing" with regard to recruitment numbers, this isn't a criticism of the DecodeME team who have done heroic work. I just would like as much of the funding to be used as possible. It did look from a long way out that the 5000 long Covid cases might not be reached, but I was still hoping that the 20,000 other samples could be arrived at.

Fingers crossed like you say a lot of those 4K people who have kits do send them in.

I also thought from the wording last week that we were at over 18,000 DNA samples hence my disappointment.

 

I put a post in an MEA fb group i a member of today, to nudge people and there were a couple of comments & there was some confusion about how many more participants are required... I thought that since we had 18k & the target originally was 25k that we are currently 7k short of target, but someone else believes we still need twice that number. Unfortunately all the official DECODE posts etc just say 'we still need more', which could mean 100 or 20k. I wish it could at least say we still need 'many more' or a lot more or something. IMHO it has no sense of urgency about it.

Not in any way a criticism - the team have done an amazing job... just wondering so i can be clear about the actual state of play. I want to have my facts straight

 

So our target is to receive 20k pre-Covid samples and 5k post-Covid samples. We are closing in on the pre-Covid, at least in numbers sent a spit kit, but things to consider is that not everyone we send a kit to will send it back, and not every kit we receive back will have a viable sample in it.

So how many more participants and samples will we need to hit the 20k? Well, unfortunately that is the million dollar question, and as we can't answer it, all we can do is keep encouraging as many people to sign up, complete the questionnaire and return their spit kits as possible. My pessimistic, and very much unofficial, personal guesstimate is that another 5k would definitely see us over that particular line, but I hope that I'm wrong.

Sadly, we have had to accept that we won't get anywhere near to the post-Covid target as we are seeing very low numbers from that group signing up.

 

Just to add a bit of info:

From today’s newsletter:

- “almost 20,000 participants have also been invited to provide a DNA sample.”

- “we currently have over 4,000 spit kits that have been sent out and not yet returned.”

So under 16,000 samples have been successfully returned at the moment, out of 25,000 (5000 Post-Covid ME/CFS and 20,000 others).

 

Thanks @Andy
I had no idea we were getting close to the closing date until this most recent newsletter. Was it publicised for a while (the closing date in november) & i just missed it?

 

No, this is the first time we have publicised it.

 

ah good glad i not missed it..... I must say it has lit a fire under me somewhat! I been dealing with so much with other health stuff on top of ME this year and no carer, that i only told people i know well, it's been on my to-do list for months. But i have gone mad telling everybody on my friends/email list now, and sod them if they dont like it - it'd be heart breaking if we dont get enough samples to make it worthwhile!

I wont be able to do anything else all wk now lol but its worth it.

I'd suggest making the deadline loom even larger in any way you can, banners across social media posts (simlar to Last 7 Days banner over the top of the 'SALE posters in shops) with CLOSING DATE NOV 15th it might galvanise people who, like me, care a lot and have tried, but maybe could try harder.

It might also be an excuse for another press release, especially with covid numbers going up again? just a thought

 

There was this comment at the end of June:

I'm not sure how many people noticed it but I did highlight it in a few places at the time e.g.

 

yes i clearly missed that

am not on twitter & honestly i come on here when i am way too ill to be doing so, i just come on cos i lonely & end up reading things i have no recollection ive seen 20 seconds later

Anyway have done all i can now, so fingers crossed

 

Here’s hoping lots of others have similar enthusiasm. It will definitely be disappointing if the 20,000 non-Covid cases don’t get reached.

 

I also think they did a good job. They must have managed to recruit a significant fraction of all people in the UK with a ME/CFS diagnosis. There's an often-cited estimate that 250,000 people in England and Wales are affected, but I imagine most of them are undiagnosed.

 

Indeed.

As I understand it there will be a valid result anyway with 16,000 samples. The statistical difference from 20,000 is as long as a piece of string, as long as the protocol is followed. Nevertheless, getting to 20,000 would be better and it is worth every effort to reach it. It is tantalising that there are enough enrolees and all that is needed is to get samples in, but I agree that it is up to individual choice.

 

This surprises me. I will ask "my people" who have big social media platforms to see if we can't help push this part across the line. 5000 LC respondents in the UK must be doable surely.

 

The low participation from long covid patients could be due to the messaging and information around DecodeME. It was made with ME/CFs in mind, before the the long covid arm was added, and hasn't been updated enough.

For example this tweet says nothing about long covid patients being needed.
https://twitter.com/user/status/1703684107870339213


If we followed the link, we land on the "Take Part" page that again says nothing about long covid patients being needed.

The "Home" page has a small bit about long covid.

I recommend the following:

Update the "Take Part" page to prominently mention that Long Covid patients being needed.

Design a new picture that can be used on Twitter that mentions both ME/CFS and Long Covid.

If it hasn't been done yet, contact Long Covid patient organisations and social media influencers to help with recruitment.

 

Oh, that's going to be a bit of a roadblock. I assumed the study would be evaluating a "pwLC" and include/exclude based on enrolment questionnaire.