Rosetta Stone Study: £1.1m awarded to investigate links between ME/CFS and Long Covid

Chandelier

Chandelier

Senior Member (Voting Rights)
www.imperial.ac.uk

£1.1m awarded to investigate links between ME/CFS and Long Covid

A new landmark study funded by The ME Association will help scientists to uncover shared pathways between ME/CFS and Long Covid.
www.imperial.ac.uk www.imperial.ac.uk

£1.1m awarded to investigate links between ME/CFS and Long Covid​


Scientists at Imperial College London, with the help of funding from The ME Association, are undertaking a project to create a fuller picture of the immune profile of the two conditions with the specific aim of learning about underlying mechanisms through analysis of shared pathways between the conditions.

The Rosetta Stone study will map the immunological profile of ME/CFS and long COVID using samples from group of volunteers who have these conditions, in a direct side by side comparison of cohorts.

The lead investigators at Imperial are Professors Danny Altmann and Rosemary Boyton. Professor Danny Altmann, from the Department of Immunology and Inflammation at Imperial, said: “There has been little research into the relationship between ME/CFS and Long COVID, which are both post-infectious, persistent conditions, with similar symptoms. We want to use the latest technology and samples provided by volunteers, to try and highlight the common immunological themes and pathways, hopefully informing the most promising therapeutic approaches.”

Building a map of the immune system:​

The Rosetta Stone study will examine 250 people with ME/CFS and 250 people with Long COVID, alongside matched healthy control groups.

Drawing also on the cohorts and the scientific expertise developed in other studies such as the NIHR WILCO Long Covid study at Imperial and the DecodeME study at the University of Edinburgh, the researchers will use a range of techniques to build a clearer picture of the immunological profile of these conditions. They will examine stool, blood and saliva samples from volunteer participants, as well as using detailed information reported about their symptoms from a smartphone app, ELAROS.

The samples will be analysed across a battery of technologies to generate datasets allowing the scientists to apply machine learning methods and discover shared patterns between the two conditions.
Click to expand...
 

Driving discovery: The ME Association invests £1.1m into pioneering research programme!​


Today, we are incredibly proud to unveil news of our latest investment into ground-breaking research to help world-leading scientists uncover shared pathways between ME/CFS and Long Covid. The ME Association is investing £1.1m into the Rosetta Stone study – the largest ever single investment in biomedical research by any charity in this field, and the largest research project of its kind.

Top scientists at Imperial College London will lead the three-year Rosetta Stone study, conducting side-by-side cellular and molecular analyses of ME/CFS and Long Covid. This will offer an unprecedented look into what these conditions share, which may take us closer to diagnostic biomarkers and treatment pathways.

meassociation.org.uk

Driving discovery: The ME Association invests £1.1m into pioneering research programme! - The ME Association

Today, we are incredibly proud to unveil news of our […]
meassociation.org.uk meassociation.org.uk

 
This is brilliant news. It's great that Danny Altmann is now funded to be working in the ME sector. He's a great advocate with a significant media profile.
It's also great that the ME Association is funding this - it's easily the biggest study they have ever funded, and it's exactly the type of thing we need.

(side note: it's also a vindication of all those who pushed the MEA for change last year - it appears to have paid off! Thank you to all those who supported).
 
This is great! But I really want to see the results of WILCO. And it goes to show that charities could fund at least part of SequenceME if it came down to it.

I don't understand why that hasn't happened already.

And as was pointed out on bluesky, it's absolutely insane that six years after the start of the pandemic, this kind of study is only just happening and charity not government funded.
 
It is good to see a project being set up at Imperial. I have some reservations about how they intend to distinguish LC and ME/CFS groups and avoid sampling bias on things like disease duration. It is also unclear how you do a comparative study on immune signatures when so far we don't have one established for ME/CFS. But hopefully they will take on board the T cell subset data from Jackie Cliff and the fluorospot study and see if findings can be replicated.
 
Post copied to thread United Kingdom: ME Association governance issues
-------------

Robert 1973 said:
Playing devil’s advocate, they might argue that they were holding money back so that they would have enough in the bank to able to fund this type of study.

Regardless, I’m pleased that MEA is funding this.

I can’t remember how much they have hoarded but I’m hoping they might be able to invest a significant sum towards SequenceME too.

On fundraising, I have found that doing birthday and Christmas fundraisers on JustGiving and Facebook has been effective. I try to make the point that I would rather people make donation than give me things I don’t need – because what I need more than anything is to understand what is wrong with me and get better. For significant birthdays I’ve sent circular emails and asked close family to forward them to their contacts too. I’ve raised about £20,000 for different ME/CFS charities doing this and other things since 2013 – mostly for MERUK but this year I’m raising money for AfME for the first time (requesting that the money goes towards their research work).

Despite today’s welcome announcement, I’m reluctant to raise money for MEA because of all the issues which has been discussed elsewhere in here.
Click to expand...
I’m pretty sure that’s what they did argue in one of their public financial accounts, but i cannot remember which one.

My related views -

It seems to me to be a bit incongruous to be claiming to be funding the biggest charity research study at the same time as not having funds to afford a CEO. Arguably, having a CEO, at some cost over the years, would have yielded a more professional, proactive organisation, more effective fundraising and potentially have supported campaigning for fair government funding, currently standing at 40 times less per person, & 160 times less in total than dementia funding, when dementia economic costs are only 10xs higher (currently) based on pre 2020 £3b ME/CFS annual cost to the economy.

Dr Charles Shepherd has Commented that whilst they are proud to fund a large study they are bitterly disappointed that the government will not provide ring-fence funding,
There's no point being disappointed , in my view, if the most pressure the mea has applied was a request behind the scenes. Also there has been reference to long covid swelling the numbers affected by a post-viral syndrome creating a crisis, however I would say the severe ME community was in a state of crisis way before.

Edited to expand on economic costs
 
Last edited by a moderator:
You must log in or register to reply here.
Back
Top Bottom