Open [UK] Rosetta Stone Study - Immune marker study

[Chandelier]

MEA Research: Recruiting: The Rosetta Stone study at Imperial College, London - The ME Association

Find out how you can take part in the Rosetta Stone study into ME/CFS and Long Covid, funded by the ME Association at Imperial College London

meassociation.org.uk

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MEA Research: Recruiting: The Rosetta Stone study at Imperial College, London​

October 27, 2026
Professor Danny Altmann and Professor Rosemary Boyton have been given the green light to begin work on the largest biomedical study into ME/CFS and Long Covid that the ME Association or any other UK charity has commissioned. 

The £1.2M project, which is expected to last until the end of October 2028, aims to apply advanced molecular analysis to matched cohorts of people with lived experience of ME/CFS and Long Covid,comparing their results to each other and to those of healthy controls.
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[V.R.T.]

which is expected to last until the end of October 2028

Is this a tentative publication date or the end of patient involvement/sample and data processing?

 

[JellyBabyKid]

MEA Research: Recruiting: The Rosetta Stone study at Imperial College, London - The ME Association

Find out how you can take part in the Rosetta Stone study into ME/CFS and Long Covid, funded by the ME Association at Imperial College London

meassociation.org.uk

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MEA Research: Recruiting: The Rosetta Stone study at Imperial College, London​

October 27, 2026​

Professor Danny Altmann and Professor Rosemary Boyton have been given the green light to begin work on the largest biomedical study into ME/CFS and Long Covid that the ME Association or any other UK charity has commissioned. ​

​

The £1.2M project, which is expected to last until the end of October 2028, aims to apply advanced molecular analysis to matched cohorts of people with lived experience of ME/CFS and Long Covid,comparing their results to each other and to those of healthy controls.​

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This is disappointing; shame samples can't be provided to a local GP practice;

Must be able to visit Imperial College in West London in person

DecodeME saliva sample and bowel cancer screening are both done by post.

 

[Kitty]

This is disappointing; shame samples can't be provided to a local GP practice

Maybe there's some technical reason, e.g. that the blood draws have to be processed in the same lab or within the same time frame?

I might be able to do it, but it'd be expensive because London's access facilities are so rubbish and I'd need an overnight stay. I don't feel inclined to spend £300 and give up activities I value for at least a week and possibly two, when there might be enough people who live in London and/or don't need wheelchair access.

 

[NelliePledge]

Obviously 1000 is a lot of people but given many 1000s of people routinely send stool and saliva samples by post surely they could have done that. And then possibly for blood tests some able to go into London and what about going out to a group of housebound people like the me biobank do it just seems unimaginative to not try to overcome that hurdle.

 

[Jonathan Edwards]

I worry that recruiting peopl with this sort of approach wi produce a huge risk of bias.

 

[Jonathan Edwards]

Obviously 1000 is a lot of people

Does it say 1000. That sounds unrealistic and more than likely to be needed.

 

[Robert 1973]

DecodeME saliva sample and bowel cancer screening are both done by post.

When I was referred to the National Amyloidosis Centre at UCL I sent blood by post for testing. Because I was housebound the community nurse came to take the blood for me and it was posted in specially provided containers and packaging.

I don’t know if it would be possible to use community nurses or HCAs for this type of research but there must be an affordable way to collect samples from people who are housebound. The biobank managed to do it with nurses visiting people at home.

 

[NelliePledge]

Does it say 1000. That sounds unrealistic and more than likely to be needed.

Yes a thousand in total from the 3 groups pre Covid ME, long Covid, people who had standard “short” Covid and recovered within 4 weeks

 

[Jonathan Edwards]

Yes a thousand in total from the 3 groups pre Covid ME, long Covid, people who had standard “short” Covid and recovered within 4 weeks

OK, found it - presumably 250 in each of four groups including healthy controls. I would have thought 100 was plenty and 50 probably enough. But never mind.

 

[hotblack]

This is disappointing; shame samples can't be provided to a local GP practice;

DecodeME saliva sample and bowel cancer screening are both done by post.

Very. I’m sure they were talking about sending stool samples before. I’d be interested in what has changed.

Including all illness severities in Rosetta is very important to the team.

If you are unable to leave your home we are not currently able to recruit you into this study, but if this becomes possible in the future we will update you.  

Hmmm

 

[wigglethemouse]

We've had many ME/CFS studies looking for markers that don't properly process blood collection in a controlled and timely manner, meaning one study does not correlate to another, or even one sample to another in the same study. Half-life for many metabolites is short and samples need to be processed in identical manner and frozen quickly in order to make meaningful comparisons. In this study it looks like sample collection will be one lab - so hopefully controlled processing is their intention. This is good news!

 

[hotblack]

In this study it looks like sample collection will be one lab - so hopefully controlled processing is their intention. This is good news!

I kind of get your point. But CureME have managed to include housebound people for years. It’s more work but excluding more than half of your study group seems not particularly good news.

Half is a guess but I think a conservative one, we have figures showing 25% severe and I think its not unreasonable to say a good percentage of moderate outside Greater London would find it hard. So you’re looking at a study of mild people and mild/moderate in London. That seems like a missed opportunity when they were talking about inclusion.

 

[hotblack]

I found what I had remembered which was from this interview where Danny Altman (about 18 minutes in) specifically talks about people being able to do stool samples at home and mail them. I think it’s fair to ask why the plan has changed and what impact that will have on the study.

 

[Utsikt]

Stool and urine samples have to be the most accessible type of samples, and we already have worked out the infrastructure on how to do it.

 

[V.R.T.]

If there is immune pathology in MECFS detectable in blood, stool, saliva etc samples, I think it's fairly likely that the signal will be significantly stronger in severe pwME. I feel like it's sort of like immune tissue biopsy in that it's something much more likely to tell us something useful than yet another study of mild and moderate people's blood. Although jnm did mention a while back that it may be a funding/ethics approval issue that keeps people from doing these kinds of studies.

I'm glad this study is underway though and I hope they do attempt to replicate the CD38/CD24 finding.