Closed UK: DecodeME updates, was recruitment thread.

Sid said:
Perhaps recruitment could be expanded to other countries.
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I understand that that idea has been resisted due to the desire to have a fairly ethnically consistent sample to cut out unrelated genetic variation. (I still think that sampling places like Australia, New Zealand and Canada wouldn't disrupt that too much - and it would presumably be possible to create ethnically homogeneous subsets.)

Does the DecodeME team have any thoughts on when might be a good time for people in other countries to be try to get another genetic study underway, and how important that might be? For example, I think it might be feasible to get 5000 people with ME/CFS in New Zealand to participate in a genetic study, and maybe 10,000 people in Australia. Such studies also serve a general publicity role - putting ME/CFS in the news.

I'm just thinking in terms of not losing time. Of course, the publishing of the first DecodeMe genetic analysis results will hopefully create a lot of impetus, but perhaps that could be capitalised on best by having one or more replicating study all ready to go? Perhaps though, trying to get another genetic study underway now would be distracting to the DecodeME team, who would ideally provide help?

Or is it thought that national biobanks like the UK Biobank, and commercial databases like 23 and Me, and international ME/CFS biobanks will provide enough sources of replication? And/or one big genetic study will be enough to provide the needed clues, and it would be better to apply international research funds to teasing out those clues?

How have things worked in other diseases?
 
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Hutan said:
I understand that that idea has been resisted due to the desire to have a fairly ethnically consistent sample to cut out unrelated genetic variation. (I still think that sampling places like Australia, New Zealand and Canada wouldn't disrupt that too much - and it would presumably be possible to create ethnically homogeneous subsets.)
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No, they can't recruit from other countries because their control population is from the UK Biobank. If patients were from all over the world, the controls and patients would no longer be matched. They used the biobank so they'd only need to gather half as many samples.
 
It's quite hard to imagine another large-scale genetic study getting funded until this one reports, and the results have been studied by other groups. It might find something interesting that could be pursued with much smaller and more specific groups of patients and controls; or it might find no clear signal that's detectable with our current state of knowledge and analytical tools, in which case another 9,000 samples probably isn't going to add much.

What I'm really unclear about is whether there would be opportunities for reanalysis of some of the same data if we learn more about the biological underpinnings of ME. Is it possible, or even likely, that something would be missed first time but then found to be present later? I suppose it partly depends on the specifics—something that could be caused by numerous different changes in a dozen or more genes is presumably much harder to see.
 
Tom Kindlon said:
“Between its full launch date of September 12, 2022 and a data freeze performed on December 19, 2022, DecodeME recruited 17,074 female or male participants who completed a questionnaire”

20,000 today so number of new participants quite low.
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Still, they're making progress. At last update, just over half were asked for samples. Thus, we're likely around 10,000 samples.
 
RedFox said:
Still, they're making progress. At last update, just over half were asked for samples. Thus, we're likely around 10,000 samples.
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Indeed. I’m just disappointed: I have been trying quite hard on Twitter for the last while retweeting daily (or almost daily) tweets. It is now taking me a couple of minutes each day to find new ones as I generally have to scroll back to 2022 (though I did discover some new ones today using the website address). I don’t see myself keeping that up. [Have also been doing a bit on other social media too].

It just looks like there is a more than 50% chance at the current rate 25000 DNA samples won’t be reached in total, or even 20,000 without long Covid. I dislike seeing some of the £3.2 million in funding going unused.
 
NelliePledge said:
Its not even 12 months yet.
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Yes but around 3000 questionnaires filled in over the last 4 months.
And only around half go on to give DNA samples. So around 375 DNA samples a month, which all things being equal will go down over time. And I believe it will only run until Sept (?) 2024. So that’s why it looks to me there’s a more than 50% chance the target won’t be reached.

I’m not saying the target can’t be reached if more people can be reached in some way.
 
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For some things, people might hold off and see if other people come forward and only then do it close to the deadline if they saw it was necessary. But my guess is there wouldn’t be very large numbers (e.g. many thousands) who would be doing it for this. But I have no specific information to base it on.
 
Tom Kindlon said:
Just repeating what I posted elsewhere today:


This study has funding to analyse the DNA of 5000 people with ME/#CFS following Covid. At the time of this analysis, only 380 had completed the questionnaire. Hopefully more people with #LongCovid can be reached to take part in this important research.
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I'm sorry, but if only 380/5000 LC people have completed the questionnaire at this point, there is clearly an issue. I never see anyone with LC talk about decodeME. But for the last two years they have kept yapping about #teamClots, HELP apheresis and those stupid Patterson cytokines. There's a reason for this: those people know how to market themselves. DecodeME is clearly lacking in this area. Sometimes though love is needed.

Edit: to be clear, i understand that putting yourself out there too much can be counterproductive if you end up attracting patients that don't really have ME, so it's a balancing act, but it's clear that nobody with LC knows about decodeME
 
I think the problem with LC recruitment to DecodeME is likely to be a lack of diagnoses of ME/CFS by clinicians. It's hard enough for pwLC to get any specialist input and I think adding an ME/CFS diagnosis on top of an LC diagnosis won't be seen as a priority by either patients or clinicians.
 
Trish said:
I think adding an ME/CFS diagnosis on top of an LC diagnosis won't be seen as a priority by either patients or clinicians.
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I agree. Why would anyone with ME/CFS-like Long Covid seek out an ME/CFS diagnosis? It would just make an already stigmatised condition worse. And I can't imagine the LC clinics embracing ME/CFS, as delivering NICE ME/CFS compliant care to Long Covid patients constrains their treatment options.

I'm not sure what the existing UK ME/CFS clinics are doing. Are they still diagnosing people with ME/CFS, even if the trigger was Covid-19? I suspect even people with ME/CFS symptoms whose triggers probably weren't a Covid-19 infection are receiving Long Covid diagnoses these days. Expecting people to have doctor-diagnosed ME/CFS as well as Long Covid in order tp participate in DecodeME as Long Covid participants seems unrealistic, unless DecodeME has a lot of partnerships with sympathetic and informed clinics.

Would it be possible to have people with doctor-diagnosed Long Covid fill out the questionnaire? And then anyone who meets the ME/CFS criteria in terms of their questionnaire answers could participate in the genetic analysis as ME/CFS-compliant Long Covid participants?
 
Hutan said:
Are they still diagnosing people with ME/CFS, even if the trigger was Covid-19? I suspect even people with ME/CFS symptoms whose triggers probably weren't a Covid-19 infection are receiving Long Covid diagnoses these days.
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I think there's likely to be a lot in this. There's also arguably a good clinical reason for keeping the two separate, at least on people's medical records. Categorising/coding the two conditions for statistical and resource allocation purposes, and treating/managing them are different issues.

Has anyone seen Twitter polls of long haulers asking whether they match the ME/CFS criteria, but haven't been given a formal diagnosis? It's quite hard to search without signing up as a user, and I just loathe it too much!
 
Trish said:
I think the problem with LC recruitment to DecodeME is likely to be a lack of diagnoses of ME/CFS by clinicians. It's hard enough for pwLC to get any specialist input and I think adding an ME/CFS diagnosis on top of an LC diagnosis won't be seen as a priority by either patients or clinicians.
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I thought having LC diagnosis + ME symptoms was enough, if it requires a straight ME diagnosis then that would explain why we can't get those patients, i can't imagine a physician diagnosing both
 
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