Open [UK] Rosetta Stone Study - Immune marker study

Chandelier

Chandelier

Senior Member (Voting Rights)
meassociation.org.uk

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 meassociation.org.uk


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.
​
 
Chandelier said:
meassociation.org.uk

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 meassociation.org.uk


​
​

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.​
​

Click to expand...
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
Click to expand...
DecodeME saliva sample and bowel cancer screening are both done by post.
 
JellyBabyKid said:
This is disappointing; shame samples can't be provided to a local GP practice
Click to expand...

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.
 
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.
 
JellyBabyKid said:
DecodeME saliva sample and bowel cancer screening are both done by post.
Click to expand...
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.
 
Last edited:
JellyBabyKid said:
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.
Click to expand...
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.  
Click to expand...
Hmmm
 
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!
 
wigglethemouse said:
In this study it looks like sample collection will be one lab - so hopefully controlled processing is their intention. This is good news!
Click to expand...
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.
 
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.
 
hotblack said:
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.
Click to expand...
Karl Morten at Oxford has talked about the pitfalls of using those samples for his metabolic and cellular energy studies, specifically for the reason I mention. I think it set back the group in their work quite a bit.

You can't compare a sample taken at the lab and processed and frozen within 30 minutes to one that was collected 10 hours ago and then processed back at the lab unless that particular metabolite is very stable over time out of the blood in the type of tube it was collected in.

I took part in a US study where they collected samples at home (15 minutes from the lab) and centrifuged and froze the sample on dry ice in my kitchen. Having the researcher perform this at the participant home site and rush back to the lab for freezing at -80C is expensive compared to having a group of participants come to the lab at the same time and batch processing quickly using exactly the same equipment and procedures. But you do get to include homebound patients.
 
Sure, fair points @wigglethemouse and I’m not dismissive of potential importance of sample handing on results.

But the story from this project and how it has been sold (and arguably justified funding) has changed and in quite a short time. I would like them to explain why and be up front about the impacts this may have on results.

If they had started saying this study would be limited to a subsection of patients for specific reasons and outlined them I would probably still not be happy but would understand why. This feels closer to a bait and switch. My view is that this is not good form or good science.

Maybe the reasons were not technical but ethics approval or money or who knows what. I think it’s fair to ask and expect answers from the team on why the limit and why the change.

We desperately need more inclusion of severely affected patients but we see them excluded again and again.
 
Last edited:
I hope the study turns up something. It’s was great to see Imperial and Danny Altman involved in the field.

But given the way things are going I’m just disappointed and concerned that it won’t. It looks to me like mistakes from the past are being repeated rather than this being something new and interesting. Adding on the involvement in this piece on rehabilitation is an extra concern and misjudgement, or perhaps some are just listening to and being guided by the wrong people here. I’d love to be proved wrong but there’s been more warning signs on this study, the setup and methodology and framing as time goes on.

We’ve thankfully got a lot of those new and interesting studies happening elsewhere though with researchers who are far more engaged and aware of or open to learning about and avoiding mistakes.
 
You must log in or register to reply here.
Back
Top Bottom