United Kingdom - National Insitute for Health Research (NIHR) news

UK: National Institute for Health Research: Newsletter: Patients and the public, September 2020

Lots of articles about patient involvement in various research, unsurprisingly including Covid-19 trials.

Thought this one in particular could be of general interest:

Become a reviewer for NIHR Evidence

NIHR Evidence aims to provide research for all, assessed by you.

We are looking for patients, carers and the public to register as reviewers and help us determine what research should be promoted on the website. Reviewers will be asked to read the abstract of a published paper in a research area of their interest before answering questions related to the importance of the paper’s findings. We expect a reviewing task to take between 20 and 30 minutes and we will be offering a payment of £12.50 for each completed review. Find out more or register to become a reviewer

Full newsletter, https://mailchi.mp/nihr/nihr-patients-and-the-public?e=ab7f9f2704
 
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UK: National Institute for Health Research: Funding Opportunity: Research for Patient Benefit - Competition 45

Applications are invited for research proposals that are concerned with the day-to-day practice of health service staff, and which have the potential to have an impact on the health or wellbeing of patients and users of the NHS. As a response mode researcher-led programme, Research for Patient Benefit (RfPB) does not specify topics for research, but encourages proposals for projects which address a wide range of health service issues and challenges.

The programme aims to fund high quality quantitative and qualitative research with a clear trajectory to patient benefit. It particularly encourages applications that have a strong element of interaction with patients and the public, and which have been conceived in association with a relevant group of service users.

https://www.nihr.ac.uk/funding/research-for-patient-benefit-competition-45/27330


Posting this as wondered if there was potential here for some sort of ME focused research.
 
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Merged thread

UK: "Better research, faster: NIHR launch new funding call to address NICE research recommendations"

"In April 2021, the National Institute for Health Research (NIHR) launched a new rolling funding call for studies addressing NICE research recommendations.
...
What’s changing?

To reduce the time to commission new research recommended by NICE guidance and increase throughput, we have worked closely with NIHR to review and agree changes to this process. NIHR has launched a new researcher-led rolling funding call, which will complement existing commissioning workstreams. The new call will seek applications to address research recommendations identified in NICE guidance published or updated from 2015 onwards. For the purposes of this call, NICE guidance includes the following: clinical, social care, public health, technology appraisals, interventional procedures and diagnostics. The primary outcome measure must be health related and proposals must be within the remit of one of the four participating NIHR research programmes:"

https://www.nice.org.uk/news/blog/n...call-to-address-nice-research-recommendations
 
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Oh my ! No wonder there was such anxiety amongst the usual subjects re: the new Guideline, not only has MRC abandoned them this has the potential to cut off the ever flowing NIHR cornucopia of funding for psych approaches for ME/CFS at source.
 
From the new NICE guidelines, https://www.nice.org.uk/guidance/ng206/chapter/Recommendations-for-research

"Key recommendations for research

Diagnostic tests
A core outcome set
Diagnostic criteria

Other recommendations for research

Self-monitoring management strategies
Sleep management strategies
Dietary strategies"

ETA: Posted the above details as, in theory, NIHR should be open to funding these areas.
 
The problem with those 'helpful strategies' is that PWME have such varied responses to treatments (or strategies) that it's unlikely to help many people. They'd basically need one research project for each individual. Hmm, I'm not sure just how much benefit there'd be for developing dietary or sleep strategies from even an expensive research team. It mostly comes down to trying different foods or ways of sleeping, which we can do without a research team.

Personally, I'd vote for all the funding to go to identifying actual biological abnormalities in PWME. Identifying even one factor common to 90+% of PWME would be the start of finding the core dysfunction and potential treatments. My personal opinion is that the core dysfunction is in the brain, so sampling elsewhere in the body is probably a waste of resources.
 
I am also not convinced that therapeutic research is a high priority right now.

We really need some basic stuff done to provide some clues about where to go. Clarifying the nature and behaviour of PEM, for example.
 
My guess would be that the recommendations lean towards more therapeutic possibilities as they come from NICE, whose focus is health and care. Yes, there is an argument that improvements in health and care would come from more 'nuts and bolts' research but the focus would seem, at least to me, more on what might impact the patient more immediately than relying on research into basic stuff and waiting for therapeutics to emerge from that.

I'm not arguing for this approach, I'm just explaining my thoughts on why they made these recommendations.
 
Andy said:
My guess would be that the recommendations lean towards more therapeutic possibilities as they come from NICE, whose focus is health and care. Yes, there is an argument that improvements in health and care would come from more 'nuts and bolts' research but the focus would seem, at least to me, more on what might impact the patient more immediately than relying on research into basic stuff and waiting for therapeutics to emerge from that.

I'm not arguing for this approach, I'm just explaining my thoughts on why they made these recommendations.
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I'm sure that is right. There isn't much latitude for arguing with NIHR for more basic research because that isn't what the core NIHR brief is and the NIHR might reasonably argue that funding basic research is the MRC's role.

In reality there's a lot of fuzzy boundaries, hence NIHR cofunding DecodeME with the MRC, but we shouldn't expect the NIHR - which is after all an NHS institution to give up its "health and care" focus because that isn't going to happen. What we should expect is good quality research that is properly informed by patient need, not pet psychological theories.
 
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Funding for a Core Outcome set would be good

It needs to include objective outcomes, as said so many times before.

People with ME want to be able to do more, physically and cognitively.

There is also a need for the use of relevant cognitive function tests. This would include repeating them after a period of rest, say 30 minutes. Graham was working on this when he was ill.
 
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Blog: National Institute for Health Research: It's time for patients, service users and the public to lead development of new research ideas

"The insight and input of patients, service users and the public has rightly become a standard part of research. Now research teams must share the reins with public contributors and allow them to take the lead, write Public Contributor Anica Alvarez Nishio and Steven Blackburn, NIHR Research Design Service West Midlands and Keele University’s Public Involvement Lead.

Patient, service user and public involvement and engagement is now a necessary part of any research funding application. While this shows the strides that have been made, many funding applications remain researcher-generated. The involvement of the public is still often a side dish rather than the main course. This can inhibit the creative drive of research proposals, leading to applications whose public involvement and engagement activities can risk appearing formulaic.

Involvement tends to be restricted to patient, service user and public contributors prioritising pre-determined questions, attending focus groups and workshops, or adjusting plain English summaries - a transactional approach where research teams set the agenda.

There have been many great individual members of the public who have provided their perspective and input to NIHR research (and we are extremely thankful to these people). But now it’s time to drive forward novel ways of involving and engaging with new and different people and groups, benefiting from a broader range of lived experience."

https://www.nihr.ac.uk/blog/its-tim...-lead-development-of-new-research-ideas/29669
 
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@CRG & @Shadrach Loom only scanned this but possibly a Parliamentary Question which welcomes this initiative and ask whether it will end NIHR funding for low/very low quality research into ME/CFS i.e. unblinded studies using subjective outcome criteria (questionnaires) which provide no useful evidence to inform NICE guidelines?
 
Optimal health program (LC-OHP) - Looks like GET and CBT

Muscoskeletal pain involves looking for "physical and psychosocial consequences" causing the pain. "In addition, we will use psychological assessment tools to assess the severity of depression and anxiety, and self-efficacy and pain-related thoughts." It has qualitative tests too.

The UK Interstitial Lung Disease - looks like inflammatory and fibrosis testing.

Health-related Quality of Life and Long COVID - Smartphone app capturing questionaire on impact of the Long Covid on peoples lives. All depends very much on the questions really.

Feasibility of Cannabidiol for the Treatment of Long COVID - CBD testing assessed with wearables and the standard set of questionaires.

....

Plenty of BPS stuff in here even where it doesn't belong. I may yet go through the lot but its as expected really from the UK, nothing too "advanced" based on our deeper understanding of ME/CFS/LC and its mixed with BPS.
 
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