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

Horrified that Crawley is co-author with Terence Stephenson on the CLoCk Study for kids with long COVID, meanwhile DECODE and many other biomedical studies get rejected.


https://www.nihr.ac.uk/documents/re...dividuals-funding-panel-meeting-minutes/26896

 

CLoCk Study
COV-LT-0022: Non-hospitalised Children & young people (CYP) with Long Covid (The CLoCk Study)

Conflicts: Professor Sue Ziebland, Professor Tim Peters, Professor Marcus Munafo, Professor Applications considered
COV-LT-0003: Hyperpolarised XEnon Imaging in Long-COVID Patients (HELP)

Conflicts: Professor Sue Ziebland, Professor Marcus Munafo, Professor Alison Condliffe, Professor Catherine Sackley and Professor James Moon

Outcome: Reject

COV-LT-0005: Symptom patterns and life with long-term COVID-19 in children and young people: the SPLaT-19 study

Conflicts: Professor Nusrat Husain

Outcome: Reject



CoV-LT-0006: DECODE Long Covid: A Community-based Extension to GenOMICC & DecodeME

Conflicts: Professor Nick Lemoine and Professor Cathie Sudlow

Outcome: Reject

COV-LT-0009: Characterisation, determinants, mechanisms and consequences of the long-term effects of COVID-19: providing the evidence base for health care services

Conflicts: Professor Frank Kee, Professor Sue Ziebland, Professor Tim Peters, Professor Jill Manthorpe, Professor Cathie Sudlow, Professor James Moon, Professor Catherine Sackley and Professor Marcus Munafo. Professor Jo Rycroft-Malone assumed the Chair.

Outcome: Conditional support



COV-LT-0013: Therapies for Long COVID in non-hospitalised individuals: From symptoms, patient-reported outcomes and immunology to targeted therapies (The TLC Study)

Conflicts: Professor Peymane Adab and Adam Cunningham

Outcome: Conditional support



COV-LT-0014: UnLoCT: Understanding Long-COVID for Prevention and Treatment

Conflicts: Professor Jill Manthorpe, Dr Jennifer Harris, Professor Nusrat Husain, Professor Catherine Sackley and Professor Frank Kee

Outcome: Reject

Stephenson and Crawley funding of CLoCk
https://www.bristol.ac.uk/academic-child-health/grants/
Thanks to @Sly Saint for that link

 

How we (NIHR) fund research:

https://www.nihr.ac.uk/patients-car...learn-about-research/how-we-fund-research.htm

and

https://www.nihr.ac.uk/patients-car...lp-with-research/suggest-a-research-topic.htm

In case this is useful / of interest.

 

Fucks sake

 

I feel charities need to take a stand on this. Is this a list of main long covid charities and pressure groups somewhere?

 

Science Media Centre London / Briefing, 18.07.2021:

19.6 million announced for new research into diagnosis and treatment of long COVID

The National Institute for Health Research (NIHR) is awarding almost £20 million to 15 research studies across Britain to improve the understanding of long COVID, from diagnosis and treatment through to rehabilitation and recovery.

https://www.sciencemediacentre.org/...h-into-diagnosis-and-treatment-of-long-covid/

 

More detailed press release from NIHR themselves, including descriptions of the funded projects, https://www.nihr.ac.uk/news/196-mil...s-to-help-diagnose-and-treat-long-covid/28205

 

Was it a rumour that Paul Garner got funding for a study recently?

 

His name isn't on this list of funded projects at least. I don't really see why he would be awarded funding for a study as the only thing he and his group seem to do is evidence synthesis

 

https://www.s4me.info/threads/paul-...les-and-other-media.15629/page-64#post-338423

eta: it appears PG is recruiting a research associate for that project.
https://www.cochrane.org/news/job-vacancy-research-associate-evidence-synthesis-liverpool-uk

eta 2: website covering the whole project, includes links to various Cochrane initiatives and even an article on PGs experience of Cov-19
https://www.evidence4health.org/news-events/news

 

Funding for research into long Covid is good news. Unfortunately, because so little is known about the pathophysiology of long Covid and ME/CFS, I'm afraid that the funded projects are shots in the dark that will yield little of value:

• the largest one, STIMULATE-ICP, (GBP 6.8M), will attempt to repurpose existing drugs, scan for organ damage with MRI -- both approaches have so far failed in ME/CFS -- and provide a symptom-tracking app
• the second largest one, LOCOMOTION (GBP 3.4M) will "identify (...) the most effective care" for long Covid -- pacing? -- and track how patients are referred in the NHS -- "specialist" long Covid clinics that are much like CFS/ME clinics? --
• CICERO, the cognitive impairment study (GBP 1.2M) seems interesting but strongly focuses on cognitive rehabilitation, and although there is scarce data, brain MRI scans have not shown any consistent pattern in ME/CFS
• the following studies do not sound promising at all: the "self-management support" package (LISTEN, GBP 1.1M), the diet intervention (ReDIRECT, almost GBP 1M), "Percutaneous Auricular Nerve Stimulation" to treat fatigue (GBP 640K)

Before jumping at treatments without a firmer grasp on the etiology (or etiologies) of long Covid, funding more basic biomedical research would have been more helpful. Only four such projects have received funding:

• EXPLAIN (Hyperpolarised xenon magnetic resonance pulmonary imaging in patients with Long-COVID), GBP 1.8M
• The immunologic and virologic determinants of long COVID, GBP 774K
  
• Immune analysis of long COVID to inform rational choices in diagnostic testing and therapeutics, GBP 573K
  
• Development of a robust T cell assay to retrospectively diagnose SARS-CoV-2 infection and IFN-γ release assay as diagnostic and monitoring assay in Long COVID patients, GBP 372K

There is an interesting trial on "using activity tracking and just-in-time messaging to improve adaptative pacing", but it could well turn out be damaging if it promotes PACE-like "pacing up" (quota-contigent) rather than symptom-contigent pacing.

 

I see. So not not an NHS funded trial of LP for Long Covid with his friend Trish

 

Greenalgh is named on the LOCOMOTION study
https://twitter.com/user/status/1416666422273581056

 

Looks pretty bad, honestly, almost designed to be useless. At least there's still the NIH, $1.15B is harder to waste on pointless stuff than $20M. It's possible that 1 or 2 useful things will come out of this but I'd be surprised, they still don't understand it's a research problem. The repurposed drugs one looks like a bust, especially with Greenhalgh on board (or maybe she's on another one, either way that one is a guaranteed waste). Aspirine? Give me a break.

We all know what the brain fog "rehabilitation" one will conclude. Could almost write it right here and now.

 

To be honest, many of these studies do not sound so exciting or promising. As @cassava7 said, there doesn't seem to be much fundamental research. Many studies seem to be about 'managing' symptoms.

Some examples:

ReDIRECT: Remote Diet Intervention to Reduce long Covid symptoms Trial

Quality-of-life in patients with long COVID: harnessing the scale of big data to quantify the health and economic costs

Percutaneous Auricular Nerve Stimulation for Treating Post-COVID Fatigue (PAuSing-Post-COVID Fatigue)

Understanding and using family experiences of managing long COVID to support self care and timely access to services

Using Activity Tracking and Just-In-Time Messaging to Improve Adaptive Pacing: A Pragmatic Randomised Control Trial​

 

Frankly the only upside is that aside from Greenhalgh, and that's mostly circumstantial, there are no people who are prominently hostile to ME. Which is just about the lowest bar I can imagine but at least they did not award the biggest chunk of money to people like Sharpe or any of the usual gang, or even their distant peers like Carson or Howard.

Also looks like APT is getting dusted off out of its PACE closet. Or maybe they'll just pretend otherwise. But they can't use concepts developed by patients, they just have to co-opt them. I don't understand the point of putting this through a pragmatic trial, rather than a pure research study, other than working from pre-determined conclusions. Frankly "pragmatic" has a bad connotation as far as I am concerned, it means hustling without thinking.

 

If you ignore the fact that we know it's useless, you still have to account for: why? Is this needed? Or simply an outcome that does not have to take any specific form, certainly not "individualized rehabilitation".

Although we do know for a fact that this is a useless model so obviously no, Shirley, it doesn't have to.

 

Agreed. Too much reinvention of the wheel, as researchers pretend that this is magically different from ME/CFS and post-viral illness and thus are ignorant of prior research.

I do worry that rehabilitation approaches will be misapplied - they can be helpful for patients who are spontaneously recovering, but not helpful for those that aren't. Yet I'm sure there will be many claims that the rehabilitation process CAUSED the recovery in those patients, despite the evidence being of low quality.


Spending 1.8M pounds on pulmonary imaging is also a waste, given that most symptoms are not due to to pulmonary impairment anyway.