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

[Wyva]

Paisley scientists lead groundbreaking research into long covid
"
Paisley academics are to lead groundbreaking research into the impact long covid has on people’s energy levels.

Researchers from the University of the West of Scotland are conducting one of 15 studies into the disease, which aims to help people with long covid who feel tired after undertaking day-to-day tasks."

The project aims to assess how effective a technique called adaptive pacing therapy – commonly used to treat those with chronic fatigue syndrome - is for those with long covid."
https://www.dailyrecord.co.uk/in-yo...entists-lead-groundbreaking-research-24574536
groundbreaking??

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

 

[Sly Saint]

King's researcher receives NIHR funding to study Long COVID

Dr Tim Nicholson, a Clinical Lecturer at the Institute of Psychiatry Psychology & Neuroscience (IoPPN), has received National Institute for Health Research (NIHR) funding worth almost £140,000.
Researchers at King’s, in collaboration with Imperial College London and the University of Liverpool, have received a funding grant to develop a unified approach to measuring improvement in Long COVID patients which will bring together perspectives from a variety of stakeholders, including researchers, clinicians and patients.
To do this, the project team will create Core Outcome Sets (known as a ‘COS’) which specify what measurements should be taken in all patients. The researchers will build on the existing ‘COMET’ (Core Outcome Measures in Effectiveness Trials) framework to assemble global experts from relevant areas of research and medicine, as well as patients and other stakeholders, to compare perspectives and agree on an approach.

The study will primarily focus on determining how to measure these core outcomes and which assessment methods should be used. The team will then share the agreed COS with key groups including healthcare professionals, researchers, long COVID patients and the public.

"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'?

 

[chrisb]

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

 

[Hutan]

I've been banging on about how the development of standardised research outcomes in treatment and illness course studies is really important for ME/CFS and related illnesses. This is important work, it could fix a lot of the problems we have seen with ME/CFS research - I hope it's not stuffed up. I would have preferred to not see Kings College London involved, but I guess its a big place.

who are 'other stakeholders'?

Imperial’s Dr Munblit, Honorary Senior Lecturer at the National Heart and Lung Institute, said: “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.”

I wonder what further work will be done to identify stakeholders. I'd like to see ME/CFS patient advocacy groups contacting Dr Tim Nicholson to indicate keenness to be involved. @Russell Fleming, @AfME, @Michiel Tack . ME/CFS organisations have the benefit of having people who have have been observing for a long time just how dreadfully wrong treatment research can go with a poor set of outcomes.

 

[Hutan]

Dr Tim Nicholson is a Clinical Lecturer at the Institute of Psychiatry Psychology & Neuroscience (IoPPN), King’s College London. He is also an Honorary consultant Neuropsychiatrist at the South London and Maudsley NHS Foundation Trust. He runs a specialist clinic for Functional Neurological Disorder (FND) at the Maudsley Hospital.

Tim trained briefly in neurology at the National Hospital for Neurology & Neurosurgery at Queen square before training fully in psychiatry and then neuropsychiatry at the Maudsley Hospital / IoPPN in South London. He did his PhD, funded by the UK Medical Research Council (MRC), in FND looking at the role of stressful life events that might precipitate episodes of paralysis and used other methods such as neuroimaging (both structural and functional MRI scans) and neuropsychological testing to investigate the possible mechanisms of FND. He continues to be interested in the biological basis of FND symptoms and neuropschiatric disorders more broadly, especially autoimmune causes of psychiatric symptoms.

He is currently funded by the UK National Institute of Health Research (NIHR) running a series of randomised controlled trials (RCTs) of transcranial magnetic stimulation (TMS) for FND causing limb paralysis/weakness, with linked studies investigating how TMS might work. He is also involved in developing and standardising outcome measures for FND both for use in research & clinical practice and has set up an international collaboration of 40 researchers from 15 countries (the first such large scale international research collaboration of any sort for FND) to work together on this project.

I won't write here what I said aloud when I read the sentence I bolded. Possibly trying to make that study have a good outcome will be very difficult. Perhaps we need to support another group to make a good set of research outcomes.

 

[Jonathan Edwards]

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.

 

[MEMarge]

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.

 

[Jonathan Edwards]

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.

 

[Hutan]

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.

I understand that most good scientists would not want to spend a lot of time sitting in a committee trying to convince people who don't understand, talking about useful standard outcomes. But maybe the patient advocacy groups would see this as important? They should. As nightmarish as the process of getting consensus might be, good outcomes could save millions of dollars of wasted research effort, not to mention many lives.

I think most of us here could write something on the back of an envelope in 10 minutes that would serve as a decent high level guide to good treatment study standardised outcomes for post-infectious fatigue syndromes.

There is something seriously wrong in NIHR - it appears to have been well and truly captured by BPS interests.

 

[Jonathan Edwards]

As nightmarish as the process of getting consensus might be, good outcomes could save millions of dollars of wasted research effort, not to mention many lives.

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.

There is something seriously wrong in NIHR - it appears to have been well and truly captured by BPS interests.

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.

 

[rvallee]

I won't write here what I said aloud when I read the sentence I bolded. Possibly trying to make that study have a good outcome will be very difficult. Perhaps we need to support another group to make a good set of research outcomes.

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.

 

[rvallee]

I understand that most good scientists would not want to spend a lot of time sitting in a committee trying to convince people who don't understand, talking about useful standard outcomes. But maybe the patient advocacy groups would see this as important? They should. As nightmarish as the process of getting consensus might be, good outcomes could save millions of dollars of wasted research effort, not to mention many lives.

I think most of us here could write something on the back of an envelope in 10 minutes that would serve as a decent high level guide to good treatment study standardised outcomes for post-infectious fatigue syndromes.

There is something seriously wrong in NIHR - it appears to have been well and truly captured by BPS interests.

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.

 

[Hutan]

Yes but you cannot convince stupid people of what makes sense. They don't follow. And they are in the majority.

You and @rvallee are probably right, certainly about the futility of dealing with stupid people. But, at least on the days when the IACFSME isn't publishing Lightning Process promotional material as science, or something else equally incredibly bad hasn't happened, I think we can change things. I sort of have to believe that.

People managed to get NICE to commit to updating the ME/CFS guidelines and then recognise the poor state of ME/CFS research - that was an amazing step forward. The Australian medical funding agency (NHMRC) has taken good steps to involving patient representatives in funding decisions - researchers have to show that they have engaged with patients in developing their project. So, then it is up to us to get all reputable patient organisations clearly saying the same thing about what good ME/CFS/LC treatment research looks like. And to demand that more research funders, the private ones like the Mason Foundation, and the big government ones, apply good standards. We can have biobanks only releasing materials to researchers who have track records in applying good standards. We can keep trying to educate patients so they don't sign up to bad trials done by bad researchers. Maybe the current James Lind research priority process will come out clearly saying that patients are as concerned as how research is done as what is researched.

Anyway, a topic for another thread.

 

[FMMM1]

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.

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?

 

[Jonathan Edwards]

But, at least on the days when the IACFSME isn't publishing Lightning Process promotional material as science, or something else equally incredibly bad hasn't happened, I think we can change things. I sort of have to believe that.

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.

 

[FMMM1]

“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.

 

[Andy]

Scotland: UWS project
merged thread



full article
https://www.renfrewshire24.co.uk/20...-of-20-million-funding-to-examine-long-covid/

 

[rvallee]

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.

 

[Sly Saint]

the irony is that 'Adaptive Pacing Therapy' was the PACE authors version of 'pacing' which in the end they said was not as effective as CBT or GET so CBT/GET then became the 'standard' CFS treatment.
So to say it (APT) is 'commonly used to treat CFS' is a bit misleading to put it mildly.

Trial By Error
23 January 2019

...the investigators to develop “adaptive pacing therapy.” ..
First, the PACE investigators had already demonstrated their true colors with their sub-par research and unwarranted claims going back at least a decade.
Moreover, it should have been obvious to any reasonably intelligent researcher that the PACE operationalization of “pacing” transformed this intervention into something other than the self-help strategy that patients use. PACE did not investigate “pacing.” It only investigated APT—a very different animal that required patients to create diaries and schedules of activities and on and on. Yet the PACE results have routinely been used to claim that “pacing” doesn’t work.

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

 

[John Mac]

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

Long COVID is a new disease with many unanswered questions. This uncertainty creates huge challenges for patients and clinicians.

To date, more than £50 million of government funding has been invested in long COVID research projects. The bulk of this (£39.2 million) has been awarded to 19 projects commissioned through two specific calls. The calls were led by the NIHR, the first jointly with UKRI. Projects examine the underlying mechanisms of long COVID, investigate symptoms such as ‘brain fog’ and breathlessness, and test possible treatments. They explore whether NHS services, such as long COVID clinics, meet people’s needs, and look at what people can do to optimise their own recovery.

This portfolio is complemented by research funded through other routes. These projects consider long COVID in people admitted to hospital, for example, and rehabilitation after infection. The NIHR’s 19 studies are trying to answer some of the most urgent questions.

List of funded studies at bottom of page