Closed UK: DecodeME updates, was recruitment thread.

A new blog/email newsletter.


What We Achieved in 2022

"As we resume work for the year ahead, we want to take the opportunity to look back on 2022 and see all we have achieved so far in this study.

Summary:

• We opened phase 1 to a few hundred paper participants in January. Their feedback led to us rewriting and improving the study questionnaire.
• We fully launched the study on 12 September to all participants and opened the online portal for registrations. In the first week, over 10,000 people signed up and over 7,000 of those had already completed the DecodeME questionnaire.
• At the time of writing, we have over 23,000 people registered as a user on the DecodeME participant portal. Of those, over 17,000 participants have completed the questionnaire, and nearly 9,000 people have already been sent a spit kit.
• The DecodeME study protocol was published in BMC Neurology in July making the study’s methods and design transparent and available to researchers all around the world.
• We held various webinars throughout the year and a list of these and their recording and transcripts can be found on our website.

If you haven’t yet signed up as a participant, please click Take Part

Please note that you do not need to receive an invitation to take part. Having previously registered for updates on the study’s progress does not register you as a participant."

More at https://www.decodeme.org.uk/what-we-achieved-in-2022/

 

I’m a little disappointed in the numbers. Looks like all in the ME community need to continue, or start, to highlight this in whatever way they can.

 

Is it still possible to hit the target number of people providing samples? Will this affect the timeframe, or anything?

 

I’m not part of the study but my impressions are:
(I) Yes
(II) The quicker they reach the target, the quicker results will be available.

I’m sure Andy or someone who is part of the team can answer with more authority if they feel inclined. Happy to delete or edit if I’ve picked things up incorrectly.

 

I'm also saddened by the turnout of only 9,000.

 

We obviously hope it is still possible to hit our target but we only have funding for a set period, so there may come a point where we have to close recruitment to allow for analysis of all of the samples that we do have. We are grateful to everybody who has already shared details of the study, we were never going to be able to recruit all we hoped in one go, and Dolphin is right, the more people who share the bigger the chance that we will hit our recruitment target.

And to clarify, the turnout so far is over 17k who completed the questionnaire, the 9k figure is of those who were asked for a DNA sample, which is obviously dictated by our selection criteria. Given that this is the first time that anybody has attempted to apply the selection criteria we are using to so large a cohort we couldn't know what our selection rate would turn out to be; we had hoped that it would be higher but it just means that we need more people (based in UK, 16+ and diagnosed with ME/CFS) to complete the questionnaire.

 

I wish you and your team the best. It's estimated 250,000 people in the UK have ME, but how many actually have a diagnosis? We need to recruit a significant fraction of all people with diagnosed ME in the country, quite a hard task.

 

I'm not sure what the highest number of questionnaire responses ever is but I'm certain that 9000 DNA samples already represents the largest ME/CFS genetic data set collected by any research group anywhere.

We've been discussing the impact of the questionnaire results on the genetic analysis today in the team, and the answers from everyone will inform and improve the analysis of the genetic data, so everybody who takes part is having a very real impact on what we achieve.

 

I'm not sure what more we as individuals can do.

I post regular updates on my fb page but have very little response apart from one friend linking me with a Healthwatch study on ME completing which exhausted me. I did tell them that and advised them to look at Decode for an example of an ME friendly survey/questionnaire.

Mr B is doing his bit and has found through rowing friends 3 siblings/relatives who have ME, none of whom seem to be connected with an ME organisation. He has passed on the Decode links but has not heard back whether they have chosen to connect.

From the years I lived here before ME really affected my life, I know a lot of people although many have become acquaintances rather than friends as I have withdrawn from the social life on offer, but none has revealed that they know anyone else with ME. I am wondering how far the stigma from the Pace days might have had an effect. In the early days soon after I was diagnosed, one did contact me to tell me her daughter had been diagnosed with ME, had been unable to work and was criticised by family as lazy but had been cured by vit D and was then working full time as a teacher. When vit D didn't cure me, there was no more interest. I had a clear impression that stigma was a part.

This was all around 2008. I felt I always sensed an embarrassment when I revealed my diagnosis but it was hard to know if that was me or the other person, both influenced by the then narrative.

Now I am beginning to tell people individually about Decode but I see very few people so that's not spreading it far. it's a good way in to say I am going to 'spit for science'- and I will see what emerges.

I am contemplating sending a letter to selected friends that I don't see with information about Decode and asking them if they know anyone with ME that they could send it on to. It would need to be on a coherent day. I didn't even feel like writing a Xmas letter this year and this post has been written over two days. Do we have any A5 flyers preferably with a picture from Decode I can attach to the letter ? I am unable to check this at the moment ( severe brain fog) and I'd like to post this now or it will be lost. Sending links alone to people not involved in ME already is perhaps not inviting enough.

 

Thank you for all of your efforts, I and the rest of the team deeply appreciate it. Please note that, when we appeal to the community to do what they can to spread the word about the study, we aren't hoping for people such as yourself to take on board that message, as you obviously are doing what you can already, but those people who have the capacity to take some sort of action but who currently aren't.

Unfortunately we don't have a way to target messages like this more specifically, so please don't take it as a criticism of your efforts. And we are also aware that many people won't have the capacity to help promote the study, so our messaging isn't meant for that group either.

We have some posters, leaflets and information sheets available at https://www.decodeme.org.uk/ways-to-share/ that can be downloaded and printed at home, if you have access to a printer.

 

Thanks @Andy. Don't worry- I wasn't feeling criticised, just concerned that we connect with as many people as possible.

 

Firstly, for the avoidance of any doubt, this wasn’t a criticism of the DecodeME: I was highlighting the numbers in case people never read it to show the target hadn’t been reached or even nearly reached.

This is probably pretty obvious but I reckon for a lot of people, they won’t apply and do all the steps the first time they hear of it. One can be struggling with all that life throws at one at any one time and not feel one has the bandwidth to take on any more. So hearing it at different times maybe from different people will help.

It’s also great when people not closely connected to the ME community (not part of groups) can be reached as @Binkie4 has done.

 

I think it's fair to say that if the study doesn't meet its target, that most of the blame can be put on the healthcare system for refusing to cooperate. It would have probably met its target otherwise.

 

No, I don't think it is.

 

I think it is a pretty big achievement to get 9,000 samples in. I always thought that it would be reasonably straightforward to get the first half of the number wanted and that getting the second half would need some pushing.

Is now the time to try other avenues for publicity. I am wondering about journalists like Jerome Byrne or Frances Ryan to do pieces in daily papers or trying to get professional medical bodies or more general charities like Versus Arthritis to email members.

 

For what it’s worth, every one new person who is reached may be “worth” more than one person as some may go on to reach out to other people. And some of those may reach out to other people again, etc.