Closed UK: DecodeME updates, was recruitment thread.

SNT Gatchaman said:
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.
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Trish said:
I think the difficulty is that they have to have been diagnosed with ME/CFS as well. I don't think that's happening very often, even if they fit the criteria.
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Yes, Trish is right, we do need people to have received an official ME/CFS diagnosis. And also, anecdotally, we have heard that clinicians are reluctant to give an ME/CFS diagnosis following Covid, proven infection or otherwise.

And from our FAQ,
"I have Long Covid, can I take part?

We think many people with Long Covid will meet the criteria for ME/CFS, but not everyone. If a health professional has given you an ME/CFS diagnosis, then you can take part."
 
Hoopoe said:
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.
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Thank you but I don't agree. We don't want Long Covid patients, we want people who have received an ME/CFS diagnosis.
 
Trish said:
I think the team have done a fantastic job getting as many participants as they have so far. There are so many reasons why people may hesitate about giving their DNA, and the effort of actually signing up and providing the sample and sending it off is more than some want to manage. The pandemic can't have helped too.

I hope this last push will get the numbers over the line.
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Indeed, and well done & gratitude to everyone who has promoted the study in whatever small way.

BTW when i said yesterday that i'm trying harder now, i just meant that it jumped higher on the priority list. I've been sacrificing self care in order to do other absolutely critical things so promoting Decode outside my immediate circle was lower on the list but since this could be a game changer & theres a risk to the result if the numbers dont come up, its become more important than bathing, for a few days anyway!
 
JemPD said:
Indeed, and well done & gratitude to everyone who has promoted the study in whatever small way.

BTW when i said yesterday that i'm trying harder now, i just meant that it jumped higher on the priority list. I've been sacrificing self care in order to do other absolutely critical things so promoting Decode outside my immediate circle was lower on the list but since this could be a game changer & theres a risk to the result if the numbers dont come up, its become more important than bathing, for a few days anyway!
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Thank you for all your efforts, but please look after yourself first. As Jo mentions above, we do already have sufficient numbers to run the analysis, but we will continue our recruitment efforts up to the recruitment end date as the more samples we can add to the analysis will both increase the chances of us finding anything and increase our confidence in whatever we do find.
 
With lots of things in life where you might be needed as a volunteer, you can hope someone else will do it, and only do it if it turns out you are required. I think it is possible in this case that there may be some people who put off doing it in the hope they wouldn’t be required but might do it when the deadline is running out and they learn the target hasn’t been met.
 
Andy said:
Thank you for all your efforts, but please look after yourself first. As Jo mentions above, we do already have sufficient numbers to run the analysis, but we will continue our recruitment efforts up to the recruitment end date as the more samples we can add to the analysis will both increase the chances of us finding anything and increase our confidence in whatever we do find.
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Thanks Andy for your care. The way i see it is that one more missed bath wont make much difference in the scheme of things. But Decode might lead to me being able to get treatment so i can take as many baths as i like, so temporarily, its worth it.



Dolphin said:
With lots of things in life where you might be needed as a volunteer, you can hope someone else will do it, and only do it if it turns out you are required. I think it is possible in this case that there may be some people who put off doing it in the hope they wouldn’t be required but might do it when the deadline is running out and they learn the target hasn’t been met.
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this, precisely this
 
Andy said:
Email newsletter

"Firstly, a big, one year since launch, thank you to everyone who has participated in the study so far. We couldn’t do it without you!

We now have some important information to share:

We are now in the final stage of participant recruitment and, if you haven’t already done so, you have until the 15th of November 2023 to complete your online questionnaire.

At 5pm on the 15th of November, we will be closing our registration portal to both new participants and to those who have signed up but not completed their questionnaire.

Participants, who sign up and complete their questionnaire by the 15th of November deadline, and who are invited to participate in the DNA stage of the study, will be sent a spit collection kit. Final deadline for posting these back to DecodeME is the 31st of January 2024. As there can be unpredictable delays with the post, especially over the holiday season, please post your kit back to us as soon as possible and before this date, if you can.

This is the last call to sign up and be part of the DecodeME study. Please join those in the ME/CFS community who are doing something extraordinary by taking part.

Almost 25,000 people have already signed up and completed their questionnaire, and almost 20,000 participants have also been invited to provide a DNA sample. This is great news, thank you to everyone who has participated!

However, we still need more people, and this is the last chance to be part of this ground-breaking study. So, if you, or someone you know, are 16 or older, live in the UK and have a diagnosis of ME/CFS, please do take part now to help us decode ME/CFS at http://www.decodeme.org.uk/portal

Finally, we currently have over 4,000 spit kits that have been sent out and not yet returned. If you have received your kit, but have not yet returned it, please send it back to us as soon as possible. If you have questions about returning your sample, then our FAQ page has a number of answers that might prove useful. Each sample returned will strengthen the results of our research, so we appreciate every kit sent back.

If you have been waiting more than three weeks for your kit, since receiving an invite to take part in the DNA stage, please contact the DecodeME team, email info@decodeme.org.uk team or on 0808 196 8664, and we will investigate and order you a replacement kit, if required. The final deadline for requesting replacement kits is the 15th of November 2023.

So, if you are yet to complete your questionnaire or haven’t yet signed up as a participant in the DecodeME study, but would like to do so, please visit www.decodeme.org.uk/portal before the 15th of November.

Thank you for supporting the study,

Warmest wishes,
The DecodeME Team"
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I went round Facebook and shared the deadline to dozens of groups today.
Unfortunately you only reach a small percentage of members of groups with this method. Maybe 5% (?) which might reach 10% or more if posts get some likes and particularly if they get some comments.
So feel free to do either if you see the posts.

I've also pinned it to the top of my Instagram, Facebook and Twitter accounts.

Hopefully quite a number of people will make a big push to try to reach people in the next 8 weeks or so.
 
Andy said:
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.
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Trish said:
I think the difficulty is that they have to have been diagnosed with ME/CFS as well. I don't think that's happening very often, even if they fit the criteria.
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I know we've discussed it before, but is there any way the study can be tweaked to accept people who have been diagnosed with Long covid and pass the ME/CFS screening questions? I'm sure that the 5000 Post-Covid ME/CFS target could be achieved in a short time if that was done. We all know that a doctor's diagnosis of ME/CFS in a Long Covid patient isn't really more reliable than self-reporting on a good screening survey (well, with most doctors anyway), so I don't think there would be any loss of accuracy in the sample.

It's just that you have all of the infrastructure there, you have the funding approved. And the replication of any genetic finding in a LC ME/CFS cohort would create enormous beneficial publicity and access to further funds. The potential pay off from the effort to change the entry criteria is huge.

There was some tweaking of the entry criteria when it was realised that the exclusion of some co-morbidities was reducing eligible numbers too much. So maybe a further tweak is possible?
 
I would be very strongly against any tweaking. any information on LongCovid will be a peripheral bonus for what is supposed to be a rigorous study of ME/CFS. I would actually tend to discourage any consideration of LC until the time comes for a post-hoc analysis of those diagnosed with ME who happened to have had Covid.

My biggest concern with this study was that if the sample was a small minority of the population base it might skim off people with some genetic trait of no relevance for spurious reasons. Trying to catch another 'LC' population is to me the wrong thing to do. That may just increase the chances skimming irrelevances. Much better to focus on getting a deeper sample of straightforward ME/CFS. If they had Covid that is fine, but it should not bias recruitment.
 
Hutan said:
I know we've discussed it before
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We have, and while I acknowledge that there is a certain amount of logic to the argument, it is not possible for a number of different reasons that I have previously explained.

Hutan said:
There was some tweaking of the entry criteria when it was realised that the exclusion of some co-morbidities was reducing eligible numbers too much.
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The entry criteria was adjusted after we recognised that certain exclusions, while being sensible to apply in a clinical setting or trial, make less sense for us to apply them to our participants in a genetic study. More detail on this can be read here in our blog posted at the time of the change, https://www.decodeme.org.uk/inviting-more-participants-to-donate-dna/
 
Major study hopes to tackle ME stigma
Storm Newton, Health Reporter
Researchers behind the world’s largest study of chronic fatigue syndrome, also known as ME, are hoping to tackle the “stigma” associated with the disease as well as working towards potential treatment.
It comes as the team behind DecodeME urged more people living with myalgic encephalomyelitis (ME) to sign up as a participant before the November deadline.
DecodeME is aiming to find a genetic cause of the condition which is estimated to affect 250,000 people in the UK.
Symptoms include extreme tiredness, problems sleeping and problems concentrating.
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Major study hopes to tackle ME stigma (yahoo.com)
 
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Jonathan Edwards said:
I would be very strongly against any tweaking. any information on LongCovid will be a peripheral bonus for what is supposed to be a rigorous study of ME/CFS. I would actually tend to discourage any consideration of LC until the time comes for a post-hoc analysis of those diagnosed with ME who happened to have had Covid.

My biggest concern with this study was that if the sample was a small minority of the population base it might skim off people with some genetic trait of no relevance for spurious reasons. Trying to catch another 'LC' population is to me the wrong thing to do. That may just increase the chances skimming irrelevances. Much better to focus on getting a deeper sample of straightforward ME/CFS. If they had Covid that is fine, but it should not bias recruitment.
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RedFox said:
Restricting participation to people with diagnosed ME is the right thing to do. If this works out (half seriously) we can always do a DecodeLC study later.
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These arguments might make sense if we could have a lot of faith in the diagnoses of CFS or ME/CFS made by doctors. But, we can't. The key thing in trying to ensure as homogenous sample as possible is the screening survey that is part of DecodeME. Therefore, I don't think that people with a diagnosis of Long covid who then 'pass' the screening survey will be substantially different to those with a diagnosis of CFS or ME/CFS who pass the screening survey, except that they have developed their ME/CFS criteria compliant illness recently. For both cohorts, the main benefit of the diagnosis (of CFS or ME/CFS or Long Covid) by a doctor is the increased chance that other obvious reasons for the symptoms (anaemia, thyroid issues...) have been ruled out. I believe that someone diagnosed with LC who ticks all the ME/CFS boxes is just as likely to have 'straightforward ME/CFS' as some one diagnosed with ME/CFS or CFS who ticks all the ME/CFS boxes. Therefore, to get a deeper sample of 'straightforward ME/CFS', the key is getting the largest number of people possible.

ME/CFS appears to have lots of initiating causes. A SARS-CoV-2 infection seems to be just one of these. I imagine that hardly anyone will have received an ME/CFS diagnosis since Long Covid was recognised. So, by taking the approach DecodeME has, it effectively ruled out sampling people who have developed ME/CFS in the last 3.5 years. Excluding people with ME/CFS-criteria-compliant LC makes as much sense as excluding people with ME/CFS-criteria-compliant CFS who developed their illness after an EBV infection.

The argument that a sample is skimming off people with certain non-ME/CFS related genetic traits doesn't seem any more of a problem in a ME/CFS compliant post-2020 sample than in an ME/CFS compliant pre-2020 sample. And of course, if you have the samples, you can always exclude them. Sensitivity analyses can done, removing the LC ME/CFS people from analyses. If you don't have the samples, you don't have the choice.

Also, there are so many benefits that flow from a recruitment effort in Long covid groups. More people would come to understand what ME/CFS is, and might understand about PEM, and the issues with exercise therapies.

But, of course it's the DecodeME team's call. I'm assuming that there are funds just sitting there, available for the analysis of ME/CFS-criteria-compliant LC samples, that will disappear if the samples aren't there. I could well be wrong about that.
 
Hutan said:
But, of course it's the DecodeME team's call. I'm assuming that there are funds just sitting there, available for the analysis of ME/CFS-criteria-compliant LC samples, that will disappear if the samples aren't there. I could well be wrong about that.
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Andy said:
You are.
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Ah, thanks. I did think that funding might be a significant factor in the decision-making. I guess things often cost more than expected, and that's certainly the case in the current economy.
 
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Major study hopes to tackle ME stigma

"Researchers behind the world’s largest study of chronic fatigue syndrome, also known as ME, are hoping to tackle the “stigma” associated with the disease as well as working towards potential treatment.

It comes as the team behind DecodeME urged more people living with myalgic encephalomyelitis (ME) to sign up as a participant before the November deadline."

https://www.independent.co.uk/news/health/symptoms-university-of-edinburgh-dna-leeds-b2416303.html
 
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