United Kingdom: NIHR Long Covid research funding decisions 2021-2

Remember that recent study about LDN from the NCNED team? Looks like we have some groundbreaking research never done before ever week now.

 

King's researcher receives NIHR funding to study Long COVID

"For more information, please contact Patrick O'Brien (Senior Media Office)"

https://www.kcl.ac.uk/news/kings-researcher-receives-nihr-funding-to-study-long-covid

who are 'other stakeholders'?

 

Will they be measuring what is important, or making important what they can measure?

 

I am afraid, @Hutan, that this:

“We have brought together experts from across the UK to work with international colleagues from the World Health Organisation and large international COVID studies, such as the ISARIC consortium, to achieve consensus on the design of research studies addressing this disorder with a major global impact.”

means that the project will be a waste of time. Good science does not work by consensus committees because the majority of people who want to be experts involved in consensus do not understand the problems that need addressing. People who understand deliberately avoid this sort of project. The science will be done elsewhere, if it can be.

 

Haven't had time to follow this thread, would @Caroline Struthers know who 'other stakeholders' might include.

At least Kings aren't running this on their own.

 

I give up really. Everything is drivel now.
Stakeholder is a completely inappropriate term in this context. There are people who need help and people who might be able to help given the opportunity and a whole load of people with vested interests getting in the way. There is no commonality between the patients' role and that of the parasites. So stakeholder was never a relevant word.

 

Yes but you cannot convince stupid people of what makes sense. They don't follow. And they are in the majority. I was there for thirty years! You don;'t do things this way. As the saying goes if you want something done best do it yourself.

NIHR was specifically set up to lower the standards supposedly required by MRC- to let politically useful projects through and find ways of justifying cost cutting. I know the people who were in charge early on. Nice people but ready to do deals.

 

The choice of this person to run this study is a decision for a planned outcome that will serve nothing for the patients. This is systematic outcome-seeking. What a horrible, soulless system UK medicine has become. Or probably just medicine in general.

It seems that most people who work in health care hate their job, even regret going into it, and for good reasons, it's all built to suck the life out of people, but no one can change that system for them. But if everyone hates it and it gives poor results most of the time how is it that when decision-time comes it's 100% status quo, no one ever wants to change any of the parts that fail, if they want to change something it's always more of what failed the worst. I just don't get it. It's borderline sado-masochist at this point.

 

Seeing recent comments from some of the most visible long haulers, they are all burnt out and in despair that nothing they do penetrates anything, that medicine is still not even on square 1 here, is still fighting to preserve the decades of failure. I'm sure it would be possible to get some involved but most who have already been involved have seen that their input is strictly tokenism and no one actually listens other than for their time to speak.

Which really emphasizes the incredible courage of those who fought this for decades. Of course the early long haulers had to blitz this at first, push for the thing to get off the ground so they burned out faster.

 

Very interesting insight i.e. "NIHR was specifically set up to lower the standards supposedly required by MRC- to let politically useful projects through and find ways of justifying cost cutting". As someone who has to respond to "challenges" to Departmental policy (not health) recently I've been praising those who pester and eventually "win". Question is, can we do this i.e. challenge the funding of low quality research which can often have a negative effect on people with ME/CFS [labelling ME/CFS as something you can treat with CBT/GET]. E.g. ask regular freedom of information requests --- what research has been funded --- what are the evaluation criteria and then ask Parliamentary questions - why are you continuing to fund this crap?

 

Absolutely agree, but NICE has come close to changing things by debarring the 'international experts' from contributing and making use of the common sense of citizen scientists.

The key point is that science does not come from those who share a received wisdom, but from those who are one step ahead of the received wisdom. And high standards do not come from consensus but from the sort of rigorous analysis that is beyond most 'experts'. The 'international experts' didn't think much of the GWAS idea for ME. International experts mostly cannot see beyond their own noses.

 

“During this project, we will be developing a Core Outcome Set (COS) for long COVID. This is an important step in deciding best how to measure improvement in this disorder and optimise the ability to combine and compare data across research studies.”
– Dr Timothy Nicholson, King's IoPPN
[https://www.kcl.ac.uk/news/kings-researcher-receives-nihr-funding-to-study-long-covid]
Slightly worrying - I feel a questionnaire coming on.

@Jonathan Edwards "NIHR was specifically set up to lower the standards supposedly required by MRC- to let politically useful projects through and find ways of justifying cost cutting I know the people who were in charge early on. Nice people but ready to do deals."

I think it may be helpful to understand the underlying psychology @Hutan basically they don't care [healthy politicians with healthy families] and they are content to label people with ME/CFS and Long covid as malingerers. In the parliamentary debate on CFS they went out of their way to say the right things - so maybe the funding to King's is intended to try to address the concerns that the PACE researchers simply made up the results - which is what they did.

I'm not confident that this study will deliver anything of benefit, pigs at the trough setting the menu for future meals! It would help if it had someone like @Jonathan Edwards i.e. someone who is knowledgeable and trusted by the community - but given their track record, a sensible move like that is too much to hope for.

I think the key thing may be to try to ensure that their best interests (i.e. politicians) is in moving away from low quality psychological research - since this is politically toxic for their brand.
EDIT - long covid might help to force some change, it may not have as strong a "psychological" label.

 

https://twitter.com/user/status/1418537935717208064

 

I'm still not convinced that much of this isn't simply saying one thing then doing another, we know how this works, but at least this is the change being a constituency that is acknowledged to exist makes: can't be ignored entirely. I have little doubt that without this pressure this study would have been completely wasted. It probably will, as we have seen on this topic everything depends on who runs the study and what their agenda is, but maybe pressure will make it too much of a burden to do the usual. Although that was the premise of PACE so whatever.

The unanchoring away from fatigue and recognition of PEM is critical, nothing can more forward until the shift is completed. Until LC, it has been easy to completely ignore it, even mock it as laughable nonsense. I don't think this is quite it but continued pressure is what will remove this bloated cruise craft out of its rut and send it crashing into a volcano.

It still seems that the meaning of PEM is not understood here, but at least it can't be ignored and I hope pressure will continue, generally but likely within the study as well, long haulers will have to teach them all about it and I'm sure they will try.

 

Trial By Error
23 January 2019

ttps://www.virology.ws/2019/01/23/trial-by-error-action-for-mes-employment-advice/

 

Merged thread

NIHR: Researching long COVID: addressing a new global health challenge

https://evidence.nihr.ac.uk/themed-...ner&utm_medium=partner&utm_campaign=longcovid

List of funded studies at bottom of page