UK: MRC [Medical Research Council] blog: Accelerating research in severe mental illness

[Andy]

Posting as it demonstrates what the UK funders can do if they want to.

"Five new research hubs form the basis of the UKRI mental health research platform, which aims to tackle key challenges in severe mental illness.

Having a severe mental illness (SMI) can significantly impact many aspects of your life. By providing effective treatment and support as early as possible, it can help those affected to live full and productive lives. This is why we are establishing a mental health research platform to accelerate research in this area to understand how and why mental illnesses develop so we can improve the lives of those affected.

SMIs include disorders, such as schizophrenia and bipolar disorder, which severely impair a person’s ability to carry out even normal day to day functioning. People with SMI experience a range of inequalities compared to the general population; they are much less likely to be employed or live in stable accommodation, for example. However, what is most shocking is that the life expectancy of people with SMI is on average 10-20 years shorter than the general population, often because poor mental health also leads to poor physical health, and this mortality gap continues to widen.

With more than 500,000 people living with an SMI in England alone it is essential that we support and enable research that tackles the key challenges facing the field."


"To address these challenges, the Medical Research Council (MRC), on behalf of UK Research and Innovation (UKRI), is establishing a £22.5 million mental health platform. The platform will bring together researchers from across a wide range of medical and non-medical disciplines and institutions. It aims to connect them together to focus and synergise their efforts on generating an in-depth understanding of those who experience SMI to help discover new approaches for diagnosis, treatment and support.

This initiative is supported by funding from the Securing Better Health, Ageing and Wellbeing theme, one of five UKRI-wide initiatives aiming to harness the full power of the UK’s research and innovation system to tackle large-scale, complex challenges."

https://www.ukri.org/blog/accelerating-research-in-severe-mental-illness/

 

[rvallee]

They can't ring-fence funding, it wouldn't be fair. Except when they feel like it, then it's fair.

At least this looks to be real research, not standard biopsychosocial junk. Maybe they'll accidentally do something useful here, for once.

 

[Adrian]

"Five new research hubs form the basis of the UKRI mental health research platform, which aims to tackle key challenges in severe mental illness.

This was quoted as an example in the research hub proposal to demonstrate that the MRC can do such things. They never addressed that point - or gave a formal answer as to why they won't fund a research hub for ME.

They can't ring-fence funding, it wouldn't be fair. Except when they feel like it, then it's fair.

At least this looks to be real research, not standard biopsychosocial junk. Maybe they'll accidentally do something useful here, for once.

I have the impression that where there is a political will (lots of people talking about mental health) then the MRC will act but not without external pressure.

 

[hotblack]

I have the impression that where there is a political will

Agree. It’s amazing what is impossible until it becomes possible.

And thanks for raising this example. Although I understand these points have been made it’s really helpful to have counters/examples to the common talking points those of us who are in contact with MPs and government departments get. They may be repeating the same lines to us but if enough of us are repeating the same ‘but what about this’ points back maybe it will have some impact.

 

[Adrian]

Agree. It’s amazing what is impossible until it becomes possible.

And thanks for raising this example. Although I understand these points have been made it’s really helpful to have counters/examples to the common talking points those of us who are in contact with MPs and government departments get. They may be repeating the same lines to us but if enough of us are repeating the same ‘but what about this’ points back maybe it will have some impact.

In the end I think change will come if enough MPs push for it. It is easier if a senior minister pushes for change. One issue that is clear with the delivery plan is how difficult cross department working is on issues that aren't getting ministerial attention.

I'm thinking with Labour MPs we need to be making arguments that fit with governments policy - something along the lines of their policy is getting people back to work but with ME exertion and therefore work will make people work therefore we need research to realize this in the longer term. Significant economic benefits of doing this (reflecting significant economic costs).

 

[Jonathan Edwards]

I'm thinking with Labour MPs we need to be making arguments that fit with governments policy - something along the lines of their policy is getting people back to work but with ME exertion and therefore work will make people work therefore we need research to realize this in the longer term. Significant economic benefits of doing this (reflecting significant economic costs).

Isn't that precisely the story of the PACE trial?

 

[Adrian]

Isn't that precisely the story of the PACE trial?

no I don't think that came due to political pressure to help patients. You could argue they made a case the the DWP but I think this was more they had a true believer in the DWP (can't remember his name) who just added funding. It is different suggesting to politicians that if they want to achieve their policy aims then they need to ensure research in some areas is taken seriously (and it is clearly not). We could try to change their policies but that is a much bigger battle.

In general I see it as easier to make an argument that something fits into a larger policy framework being proposed and hence is easy to support - rather than a bigger battle to change how people are thinking.

 

[hotblack]

And you could probably argue that one of the reasons PACE was ‘successful’ was the messaging (as well as support from influential people).

If we can combine good science, evidence and a good message that seems to me more likely have success than just relying on the science. I know some disagree with this but I do think you need to find ways of convincing people, of telling a good story and I’m with @Adrian that it’s easier to do this by using something people already believe or are invested in than just telling them they’re wrong and have to change everything because you’re right.

 

[Kiristar]

And you could probably argue that one of the reasons PACE was ‘successful’ was the messaging (as well as support from influential people).

If we can combine good science, evidence and a good message that seems to me more likely have success than just relying on the science. I know some disagree with this but I do think you need to find ways of convincing people, of telling a good story and I’m with @Adrian that it’s easier to do this by using something people already believe or are invested in than just telling them they’re wrong and have to change everything because you’re right.

I agree. And the number of people affected is similar - 400,000 vs 500,000. We should be drawing comparisons and asking pointed parliamentary questions given the flanneling answers given by Ashley Dalton in the run up to the DP publication.

 

[Sean]

You could argue they made a case the the DWP but I think this was more they had a true believer in the DWP (can't remember his name) who just added funding.

That would be the late Mansel Aylward.

 

[Jonathan Edwards]

no I don't think that came due to political pressure to help patients. You could argue they made a case the the DWP but I think this was more they had a true believer in the DWP (can't remember his name) who just added funding. It is different suggesting to politicians that if they want to achieve their policy aims then they need to ensure research in some areas is taken seriously (and it is clearly not). We could try to change their policies but that is a much bigger battle.

But the point isn't about motive. It is about method. And the method is the same. There are plenty of true beleivers in the cabinet now, including the PM, who think we can forget biomedical ivory tower stuff, send the patients to physio and get them back to work.

And they are happily taking seriously research into physio and the right PROMS with HERITAGE.

We cannot at one and the same time snuggle up to government objectives and admit that they are all in the wrong direction. The 'right' research is right for reasons that have nothing to do with government objectives. If you want to follow government objectives that would be 'prevention' of ME/CFS by minimising childhood trauma (preventing pandemics would be bad for business). The current government clearly thinks that it is more important to keep in power than to stop thousands of people dying unnecessarily because of healthcare underfunding.

 

[Adrian]

But the point isn't about motive. I

The point is how do we influence people to do the right thing. We can challenge people but we are less likely to get success than if we nudge their existing positions.

 

[Jonathan Edwards]

We can challenge people but we are less likely to get success than if we nudge their existing positions.

The existing position is to forget about looking for treatments and focus on prevention.
And to tighten up on people who aren't working because they have the wrong incentives.
Hard to nudge?

Put pressure on for a plan and you get HERITAGE.

People will do the right thing when they can see evidence for what that is - a scientific lead.

 

[Utsikt]

I’ve been talking too much about this lately, but it warrants repeating: be careful what you wish for.

If you ask for help, you’ll get their version of help. If you ask for research, you’ll get their version of research. If you ask for funding in general, they’ll fund the projects they want to do.

We need to ask for very specific things, for things that people that understand the issue are in control of. Like funding for DecodeME, SequenceME, and future trials.

 

[Peter T]

I’ve been talking too much about this lately, but it warrants repeating: be careful what you wish for.

If you ask for help, you’ll get their version of help. If you ask for research, you’ll get their version of research. If you ask for funding in general, they’ll fund the projects they want to do.

We need to ask for very specific things, for things that people that understand the issue are in control of. Like funding for DecodeME, SequenceME, and future trials.

That makes sense, I guess we just got lucky with NICE, though even then the current ME/CFS guidelines involved a compromise in favour of the existing specialist services.

We definitely need to be clear what we want rather than just asking for something else to happen.

 

[rvallee]

Isn't that precisely the story of the PACE trial?

Some overlap, but we can separate intent and execution here, because the PACE model never had a single chance of working out, and it wasn't meant to. This is why they changed the NICE guideline to include the PACE model before, or right about when, the trial actually began, its results were cooked in advance and expected to arrive safely at its pre-planned destination, where the "Mission accomplished" committee had already drafted the awards and medals.

This is entirely different from doing something where the execution actually matches the intent, such as doing major infrastructure work to fix flooding problems, but only ending up making it a bit better by shifting the problem elsewhere. Here PACE was more like trying to fix major flooding problems by kicking out all the homeless people from the city that keeps flooding, it wasn't even a plausible solution to the problem. It may be a lot cheaper to kick out all the homeless people as a fix for major flooding, but only major infrastructure investment has a chance of doing that. This is as wide as the difference between this delusional mess of an ideology and scientific research.

Of course lots of people will disagree that the PACE model is completely farcical, but there is no point bothering with people who aren't connected to reality. Other than the very inconvenient fact that they make all the decisions and don't give a fig about outcomes. Which is a major pickle.

On the other side of this, there is zero doubt that producing an effective treatment for ME/CFS would have major economic benefits. Just the same as if PACE had worked, except it has zero chance of working, unlike biomedical research, which has a long and massively successful history of doing exactly that.

The expectations are the same, but one side of this is simply delusional. That doesn't mean that the intent, the final outcome, is wrong.

 

[bobbler]

I’ve been talking too much about this lately, but it warrants repeating: be careful what you wish for.

If you ask for help, you’ll get their version of help. If you ask for research, you’ll get their version of research. If you ask for funding in general, they’ll fund the projects they want to do.

We need to ask for very specific things, for things that people that understand the issue are in control of. Like funding for DecodeME, SequenceME, and future trials.

Indeed