Closed UK: DecodeME updates, was recruitment thread.

Andy said:
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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as I posted in previous post
Symptoms include extreme tiredness, problems sleeping and problems concentrating.
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Andy said:
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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Good article in terms of explaining the importance of the study and the need for more samples:


Ms Chowdhury added: “We hope to better understand the biological root causes of ME – that’s a starting point and not an end point. But the more data we have about the genetics, the easier it’s going to be for drug companies to identify potential treatments.

“We suspect there may be drugs on the market currently that can be repurposed. And by having the genetic data, then we hope that that will give the information that’s been desperately missing thus far.”

Prof Ponting said DecodeME has already had a “fantastic response” from those impacted by the disease, but thousands more samples are still needed.

https://twitter.com/user/status/1705226496770548102

https://twitter.com/user/status/1705226900786786514

https://twitter.com/user/status/1705228581310198102

https://twitter.com/user/status/1705229100254691580

https://twitter.com/user/status/1705229499049099349
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Hutan said:
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.
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It is a problem if there is an attempt to recruit patients through a new communication route linked to Covid. This is entirely matter of the unknown bias that may be introduced by recruiting online. I was significantly concerned about this from the start because it would be much better (if it had been possible in this context) to recruit through a population-based trawl through some pre-determined register in case notes or whatever. Recruiting through internet volunteering has the potential to screw things up badly.

Having looked at various bits of evidence in the context ofd the study I concluded that this problem, as long as kept in mind, would probably not make any positive results uninterpretable. However, to set. up a new route of recruitment, again through the internet but involving a different channel seems to me unnecessarily damaging to the soundness of the result. One set of confounding factors could probably be teased out.Two different sets might be impossible to sort.

I don't think this has anything to do with the precision of ME/CFS diagnosis.
 
Jonathan Edwards said:
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.
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Jonathan's comments (if I have grasped them correctly) came to mind when I heard about this study*, on the radio, earlier today.
Seems a lot of long covid may be explained by organ damage - demonstrated by MRI - so not reflective of ME.
Thought occurs that limiting genetic studies (GWAS - e.g. DecodeME), to those diagnosed pre-covid, may help to focus on a "purer" ME population.
Sure the DecodeME can be separated i.e. based on pre/post covid diagosis - so (thankfully) no issue.

*"Longer-term organ abnormalities confirmed in some post-hospitalised COVID patients -"
"A study looking at the longer-term impact of COVID-19 has found that nearly a third of patients displayed abnormalities in multiple organs five months after infection, some of which have been shown through previous work to be evidence of tissue damage."
https://www.ox.ac.uk/news/2023-09-2...nfirmed-some-post-hospitalised-covid-patients
 
I've done lots of sharing of DecodeME to groups on Facebook.
I thought I would try out a different tactic by tagging people and encouraging people to tag others.

share and tag version 3.png
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Unfortunately it hasn't really taken off in terms of tagging others.

The important UK #DecodeME study has less than 16,000 DNA samples. It has funding for 25,000 (including 5,000 people whose illness followed Covid). I think enough people are likely on Facebook but just need to be reached. I’ve done a lot of ordinary sharing. But I think more people could be reached if people both shared and tagged people.

I think most of the people I’m tagging are likely already signed up but hopefully people will share and tag others. Hopefully many of them will then share and tag and a snowball effect can be obtained.

I could write lots about the importance of the study but it could put people off reading and acting on this message. The study’s Facebook page https://www.facebook.com/decodeMEstudy and main website has plenty of info: https://www.decodeme.org.uk
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My post is here (currently with 15 shares)

https://www.facebook.com/tom.kindlo...tpW9JzFs3TiduTr9AeDgoQeKhEFxuumDSJojFELriHMGl
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and another person separately shared it from scratch (has 8 shares)
https://www.facebook.com/carole.bru...jKni7DjYccbDc45UUuy3LhBynpnTZgDDq3Lb1WE77JMFl
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in a FB group i a member of i shared a hand written post explaining & plugging Decode, i got one like & comment from someone who'd already done it. My posts generally do get responses so it was odd.

However i noticed yesterday that someone else had simply shared a link to the questionnaire page of the Decode site (so the little image that came up was about filling in a questionnaire for ME/CFS study, and she got about 20 comments & likes & people saying they had followed the link & signed up.

I'm just saying this here because i wonder if people (in their energy depleted state) are initially are turned off by being a part of research because they think it might be onerous or too demanding, and so just skim by without reading the actual post which says how easy it is.

I can use this now because i contacted eveyrone i can think of, but just mentioning it JIC.
 
Thanks for posting the link to X/twitter. I finally deleted ("deactivated") my account.

It looks like there's a typo (extra word?) in the quote in the image, in the last sentence:

"We do not have hard scientific data that is will enable us to move towards treatment."

I noticed when transcribing the quote (posting the text and image Mastodon).

I've no idea what the correct quote is, and I'm not planning on listening to the radio program, so I just deleted "is" -- hope that's correct!
 
From a DecodeME email.

"You’re invited to the next DecodeME webinar.

This webinar will be a chance to hear updates about the study's progress and have your questions answered.

It’s on Thursday 12th October, 1:00pm (BST) on Zoom and Facebook Live.

There are only 500 spots to watch the webinar on Zoom for those who don’t have Facebook. But if you don't manage to get one in time, don't worry! You can also watch on Facebook live via our Facebook page, or watch the recording when it becomes available on our website.

Register here

Thursday's Webinar will be a chance to hear updates on the project including the preliminary results from the questionnaire data. You can read the published paper HERE.

Join Chris Ponting, Sonya Chowdhury and Sian Leary from the DecodeME team to hear the latest news and what's next for the project.

There will also be a Q&A session at the end.

Send us your questions ahead of the webinar by replying to this email.

If you can’t make the webinar, don’t worry. There will be a recording available afterward on our website.

You can watch the recordings or read the transcripts from our previous webinar HERE."
 
From Cort Johnson:

Huge Decode ME Study is Closing Soon – and it Needs Your Help

The big "genome-wide association studies" or GWAS studies are unique at being able to pluck out the genetic factors that leave one susceptible to disease - and can directly lead to new treatment possibilities.

They play a crucial role in understanding disease study and thanks to the pluck and vision of our researchers - we finally have one - the UK's DeCode ME study.

The DeCode ME study has funding for a cool 25,000 participants and is closing its doors to new participants in just over a month. Right now, though, it appears to be about 25% shy of its goal.

In GWAS studies the participants are the juice that makes the study successful. More people are better, in fact, they are much, much, much better. The more participants the study has, the better chance it has at getting at the core elements of ME/CFS.

If you're over 16, live in the UK, and have ME/CFS, GWAS wants you - and believe me - you want it! Find out more about GWAS and how to participate (hint - it's really easy) and contribute to all of our futures in

Last Chance to Make History – the Huge Decode ME Study is Closing Soon – and it Needs Your Help


https://www.healthrising.org/blog/2023/10/05/decode_me-study-closing-soon/

https://twitter.com/user/status/1710088537142395186
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Good to see this from a UK local support group I'm on the email list for

Subject: XXXXXXXXXXXXXX - DeCodeME news


Hello Everyone

DeCodeMe has announced that they will be closing their project's registration portal to both new participants and also to those who have signed up but not returned their questionnaire at 5pm Wednesday 15th November 2023.


Health rising are reporting that they are over 25% short of their target of 25,000 participants.

If you haven't taken part but would like to go to
https://www.decodeme.org.uk/portal/
 
Dolphin said:
If there are any recruitment numbers mentioned, I’d be interested in hearing them to help with a last minute recruitment push.
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numbers seemed confusing and contradictory. I can only assume that different graphics used data from different dates.

Started off saying they had asked 20500 people for dna, then it (on a later graphic) said they had asked 20000, but only sent out 19,000 spit kits.

So far.....it appears they have had 15,500 kits returned, suggesting a shortfall of 3,500 against kits sent out.

So......they need more people, and more returned spit kits, but as for a number.....no idea.

ETA - so I suppose, as they are aiming for 25,000, that means they need at least 8,500 more people to return spit kits. Possibly 9,500 depending on which version of the numbers given is accurate today.
 
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Wonko said:
numbers seemed confusing and contradictory. I can only assume that different graphics used data from different dates.

Started off saying they had asked 20500 people for dna, then it (on a later graphic) said they had asked 20000, but only sent out 19,000 spit kits.

So far.....it appears they have had 15,500 kits returned, suggesting a shortfall of 3,500 against kits sent out.

So......they need more people, and more returned spit kits, but as for a number.....no idea.

ETA - so I suppose, as they are aiming for 25,000, that means they need at least 8,500 more people to return spit kits. Possibly 9,500 depending on which version of the numbers given is accurate today.
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The 20,500 figure is the most up to date one, the slide quoting 20,000 must have been created from slightly older information and the discrepancy between the two slides not spotted. Spit kits are sent out in batches which, while recruitment is still open, is why the number of kits sent out will always lag behind those who have been selected to donate DNA.
 
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