Closed UK: DecodeME updates, was recruitment thread.

"Statement on Launch Day

We want to let you know that DecodeME has launched and fully opened recruitment.

In light of Her Majesty Queen Elizabeth II’s death and this period of national mourning, we seriously considered how best to proceed with the planned launch of this study today.

We recognise how much this study means to people with ME/CFS and the patience of the community in waiting for its full launch. We understand that many of you will want the opportunity to take part as soon as possible. Therefore, we are continuing as planned by opening full recruitment today at 12pm. You can take part now on our website.

We know that this period may be an upsetting and challenging time for many. We encourage anyone who would like to take part in the study or help us spread the word to do so at their own pace and when they feel comfortable doing so. You can take part on our website when you are ready.

We will publicise the study more widely at a more appropriate time in the future.

We hope that taking this course of action and prioritising the hopes of people with ME/CFS will not be seen as insensitive or disrespectful to the Queen and that it is understood that we have made this decision with the best of intentions.

Best wishes,

The DecodeME Team"

https://www.decodeme.org.uk/statement/

 

Last I heard from them was sep 2021. Nothing today.

 

Apologies for re-using one of my existing posts but it seems pointless not to do so.

 

When asking about symptoms suffered in last six months it says “less viral infections than usual”
Should it be “more”?

 

It is probably better not to rush filling in the online questionnaire, there is a lot to read before starting the questionnaire and I should have taken a break at that point, I am now paying for it.

My advice to anyone else is to take it slow and steady and have breaks if needed.

 

Definitely this. The questionnaire platform has been designed so that it is possible to save your progress and return to it, so that as many people as possible can complete it at their own pace, rather than needing to complete it in one go.

 

Thanks for asking. I've double checked with the team and we definitely mean "less".

 

Congrats @Andy and the whole team on such a successful roll-out day!
So good to listen to the interviews and hear the coverage. Amazing work.

 

Should anyone on social media want an image to help promote the study, there is a selection available for download from https://www.decodeme.org.uk/share-on-socials/

 

Thanks very much. It was, and still is, very much a fantastic team effort by all involved.

 

Fantastic news, well done to you all. I got my email and filled in my details earlier; I stumbled a bit on the name-on-birth certificate question, but it was my slow brain, not the form. All submitted now.

I have co-morbidities too, so I may not be asked to send a sample, but I've said I'm happy to be contacted about other studies. I think this is almost as important as volunteering for the main project in a way, because it means there's a ready-screened contact list available if a new opportunity comes up. The work of publicity and recruitment is such a big part of research projects, and a nice long list of willing volunteers—at least some of whom won't have changed their contact details in the meantime!—might mean less money and time has to be spent on it.

 

Thanks for posting this Peter, it prompted us to post a reminder that there is no need to complete the questionnaire in one go.

https://www.facebook.com/decodeMEst...x9ewW52DrQh8weHfgJSnxCunpgjKhDxcnzESDn3J2ou1l

 

Thanks for checking. It made me really confused,which isn’t hard

 

Thanks Kitty, and thank you for being willing to be re-contacted in the future. The design of the study does mean that even if participants aren't asked for a genetic sample, they can still contribute in various ways.

 

@Andy I have a question about the option of sharing data from NHS records. I'd like to clarify what this means - do the team get access to everything that is on record (letters from doctors etc.) including info that is not related to ME? Or is it a specific set of data like blood test results for example? I'd just like to know a bit more about this. I can email the contact given on the patient information form if that's better than asking here?

 

Does anyone have any data on the actual number of UK ME/CFS patients with a diagnosis? I am aware of a few studies looking at about 0.2% of the population and about half that meet the Canadian criteria but I can't see to find information on how many have actually been diagnosed other than the suggestion that 90% are not currently diagnosed as another estimate. My problem with both of these is that puts the number of UK ME/CFS patients who meet the DecodeME criteria at roughly 65000000 * 0.002 * 0.1 = 13,000. I imagine that potentially looks worse with comorbidity exclusions too. The study is trying to find 20,000 patients meeting both UK diagnosis and then stricter criteria. Its something I expressed concern about before and I assume therefore DecodeME has a much better estimate that suggests that 20,000 is not 154% of the available people who meet their criteria.

 

Hi Tia, I'm checking with the team and will get back to you as soon as possible.

 

I've just completed. I found the survey clear and easy to complete. Well done to the team.

 

Hi BrightCandle. I'm checking with the rest of the team to make sure of my answer and I'll come back to you, most likely tomorrow now.

 

Hi. The projections that we used are explained in the study protocol, published here, https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-022-02763-6, and discussed here, Protocol: DecodeME: community recruitment for a large genetics study of ME/CFS, 2022, Devereux-Cooke et al

The relevant section is this:

"Recruitment projections
(1) 20,000 people with ME/CFS not triggered by SARS-CoV-2. Ahead of launch we predicted that approximately half of the 20,000 participant target would be achieved via social media and charities. This prediction assumed that: (i) 1 in 250 adults in the UK have ME/CFS, (ii) two-thirds of these have a clinical diagnosis, and (iii) our sign-up conversion rate is 43% (92% consent, 82% complete questionnaire, 75% satisfy criteria and 76% return the spit kit). Further, we estimated that the UK online ME/CFS patient community is approximately 35,000 people. We additionally assumed that 90% of these have a clinical diagnosis and that we will achieve a 43% sign-up rate, implying that 9,500 of the 20,000-participant target would be achieved via social media and charities. Because of participant attrition (e.g. incomplete questionnaires and unreturned sample kits) we expected to need to persuade 46,500 individuals to sign up in order to reach our final case participant target of 20,000 people with ME/CFS.

(2) 5,000 people with ME/CFS due to SARS-CoV-2 infection. It is estimated that in December 2021 there were 506,000 people in the UK who self-report Long COVID and who first had (or suspected they had) COVID-19 at least one year previously [18]. Approximately 50% (~ 200,000) of these could meet ME/CFS criteria applied in this study although NHS diagnosis is typically slow. Consequently, we expect to quickly recruit 5,000 of this number for this project via social media and our existing connections to Long Covid Support Groups."

Now no references are given for the assumptions made on who has a clinical diagnosis and that is because for the UK they don't exist. Essentially, a best guess was made by the team when the application for funding was first made, based on such factors as likely higher interest/awareness compared to the US for CFS, as it would be viewed by most in the medical world, the existing fatigue clinics and the NHS being, in principle, available to all. So another benefit of DecodeME is that recruitment will provide some evidence for or against these assumptions.

This is how I understand things, any error made in this explanation is my own.