UK: Medical Research Council: Centre to study how exposome causes chronic inflammatory disease

Andy

Senior Member (Voting rights)
"A new Medical Research Council (MRC) centre will investigate how the environment interacts with our immune system to trigger chronic inflammatory diseases.
These include:
  • asthma
  • chronic obstructive pulmonary disorder
  • inflammatory bowel disease
Chronic inflammation-related diseases have been estimated to cause over half of all deaths worldwide.

Unlocking the processes behind these diseases is crucial to saving lives through developing better prevention and treatments.

A multidisciplinary collaboration​

The MRC Centre of Research Excellence (CoRE) in Exposome Immunology will receive up to £50 million over 14 years.

It will leverage the combined strength of teams at The University of Manchester and the University of Oxford in:

  • immunology
  • big data
  • environmental science

What’s the ‘exposome’?​

The ‘exposome’ describes the many environmental factors a person encounters throughout their life, ranging from pollution and occupational hazards to diet and infectious diseases."

This has a huge impact on health and wellbeing, with an estimated 30,000 deaths attributed to air pollution every year in the UK, and increasing rates of inflammatory diseases in children.

However, very little is known about the mechanisms by which the exposome causes disease."

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What has been the reason given for the Medical research council “not being able to” set up a research centre of excellence for the group of neglected and stigmatised illnesses with some overlap ME/CFS , fibromyalgia, POTS and now long covid, that have not been served by current structures and processes, that suffer from prejudicing stigma and disinterest and arguably have significant enconomic and workforce consequences if left unasssisted and unexplored without urgency?
 

A multidisciplinary collaboration​

The MRC Centre of Research Excellence (CoRE) in Exposome Immunology will receive up to £50 million over 14 years.

It will leverage the combined strength of teams at The University of Manchester and the University of Oxford in:

  • immunology
  • big data
  • environmental science
Yet they won't do anything for ME even on a much smaller scale. I wonder if this exposes systemic bias in the MRC against ME research.
 
What has been the reason given for the Medical research council “not being able to” set up a research centre of excellence for the group of neglected and stigmatised illnesses with some overlap ME/CFS , fibromyalgia, POTS and now long covid, that have not been served by current structures and processes, that suffer from prejudicing stigma and disinterest and arguably have significant enconomic and workforce consequences if left unasssisted and unexplored without urgency?

They have said that their processes don't allow them to do funding like that and its up to researchers to apply. We have pointed out to them that there is a very limited pool of researchers who would reply (and in one meeting that the entire set of UK researchers were present).

Given the blank faces and lack of willingness to do anything for ME yet doing other initiatives I suspect there is quite a lot of bias against ME research. Whether that is due to bias against PwME or its as they have been burnt and embarrassed funding things like PACE. But to my mind the MRC are not fit for purpose in terms if identifying where medical funding is needed for the future needs of the country and then doing something about it. My initial thoughts were that they are just a funding club who fund existing research groups to do what they want (with proposals reviewed by other research groups that also want to do the same) where occasional initiatives come from politicians pushing on certain topics. But I am starting to wonder if there is a deeper prejudice.
 
But I am starting to wonder if there is a deeper prejudice.
It is really difficult to understand the motivations, for anyone else, but specifically in this case. We can guess but given the structures and politics probably impossible to know, but it does seem clear something is blocking things here from what so many say.

I wonder if things will shift if DecodeME shows something interesting that people can get their teeth i to or at least heir heads around? I’m not expecting some big admission of blindspots or failings but do wonder if some people’s minds will shift?
 
I wonder if things will shift if DecodeME shows something interesting that people can get their teeth i to or at least heir heads around? I’m not expecting some big admission of blindspots or failings but do wonder if some people’s minds will shift?
My concern is that Decode will show something interesting but research doesn't shift to investigate as there is no incentive to do so.
 
My concern is that Decode will show something interesting but research doesn't shift to investigate as there is no incentive to do so.

This is a concern of mine too. I know JE and others are fairly confident there is going to be a sea change and I sincerely hope they are right, but I haven't seen concrete evidence of it yet.

Perhaps we should brainstorm what we can do in the event government funding is not forthcoming. I think fundraising for the studies that need to happen, and/or trying to get charities like OMF and MERUK (I feel the MEA is far too compromised now) or even Versus Arthritus to dig into their coffers, would be the only route with any chance of success if govt funding stance does not change.

That or funnelling projects out overseas to research groups with better funding situations in Europe.
 
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This is a concern of mine too. I know JE and others are fairly confident there is going to be a sea change and I sincerely hope they are right, but I haven't seen concrete evidence of it yet.

Perhaps we should brainstorm what we can do in the event government funding is not forthcoming. I think fundraising for the studies that need to happen, and/or trying to get charities like OMF and MERUK (I feel the MEA is far too compromised now) or even Versus Arthritus to dig into their coffers, would be the only route with any chance of success if govt funding stance does not change.

That or funnelling projects out overseas to research groups with better funding situations in Europe.

So government funding won't be forthcoming without lots of work it doesn't work that way. The process requires academics in the right area to put in research proposals to explore areas identified by decode results and this these proposals go to review etc. The problem as I would see it is getting academics in the relevant areas interested in doing this - basically recruiting them to do ME research. This is what I see as difficult especially without very clear signals from the MRC to say they are taking ME research seriously. Given the reputation of being very hard to get funding then why would a research group jump through these hoops when they can carry on with their current research trajectory.

But if we can get researchers interested then I think funding could happen. I think there was talk of research writing grants from the DHSC in the delivery plan that could help fund some of the initial process of refining proposals.
 
One aspect I’ve wondered about is simple awareness. Are there are ways of us getting the message out about DeocdeME to medical schools/universities (I have a teaching hospital, medical school and universities locally to me for instance). Not sure how well this would be received and it’s not the normal route for this sort of thing, but tbh I think it may need something outside the normal routes. And even if it’s 95% unsuccessful that few percent could make a difference.
 
One aspect I’ve wondered about is simple awareness. Are there are ways of us getting the message out about DeocdeME to medical schools/universities (I have a teaching hospital, medical school and universities locally to me for instance). Not sure how well this would be received and it’s not the normal route for this sort of thing, but tbh I think it may need something outside the normal routes. And even if it’s 95% unsuccessful that few percent could make a difference.
There is intended to be a showcase event that the MRC/NIHR will do which should help. I wonder about follow up after that if we could do something to interest researchers.
 
Are there are ways of us getting the message out about DeocdeME to medical schools/universities (I have a teaching hospital, medical school and universities locally to me for instance).

The people who matter are the networks of scientists in various fields. The relevant networks will depend on the actual results. I suspect the most likely field to be activated in immunology and Danny Altmann is already on the DecodeME advisory board. Eleanor Riley is familiar with what has been going on. If interesting data emerge I think others will rapidly take an interest, at least in joining as collaborators.
 
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