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

Hutan said:
Yes,

and I'm not even sure that rehabilitation is useful for patients who are spontaneously recovering. I think increases in activity come naturally as people push against the threshold of PEM.
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It depends on the impairment and the type of rehabilitation. Work-focused rehabilitation, eg reduced hours is better than jumping straight back in once someone's sick leave finishes. Rehabilitation might be useful for those who have been hospitalised and have pulmonary impairment who have to readjust their breathing so they can exercise again etc.
 
Adrian said:
And he is talking about 'individualized' rehabilitation as being safe which is concerning especially with Greenalgh involved.
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I don't really understand exactly what the LOCOMOTION study is doing. Will it be collecting data from long covid clinics and other clinics in order to put together a treatment guide for long covid? It doesn't strike me as especially methodologically rigorous, especially given that some of the people doing the study seem to have concluded that rehabilitation, whatever that is, already works.

On a side note I would caution against saying things about Greenhalgh that aren't 100% true. She's a fan of "rehabilitation" and blocked almost everyone with ME on twitter due to a program she used, but I just don't get the impression she's in the same league at all as certain other people. Extensively advocating for Long Covid as she did earlier in the pandemic is something that people like Sharpe would only be caught dead doing. I don't think the assumption that she's the same as other figures hostile to ME patients is justified.
 
petrichor said:
I don't really understand exactly what the LOCOMOTION study is doing. Will it be collecting data from long covid clinics and other clinics in order to put together a treatment guide for long covid? It doesn't strike me as especially methodologically rigorous, especially given that some of the people doing the study seem to have concluded that rehabilitation, whatever that is, already works.
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The thing that worries me is lots of people attribute improvements to stuff they are trying at the time and perhaps don't report on the things they try otherwise (or simply try stuff when they are improving). Thismakes it very hard to make any sensible intepretation of data collected from clinics. If the plan was to do an assessment to work out potential candidates for testing then this would be fine. But to try to extract trends from very low quality data is hard. It could be argued that with sufficient patients perhaps the noise is reduced and a trend could emerge but I'm not sure I buy into that argument. Things people try are also not independant, i.e. things to try spread by word of mouth, and equally reporting of results isn't in that perception can be affected by those around and what others are saying on social media.

So I think this could end up as a very difficult study leading to false hope and a belief that some interventions help when they don't (which if the interventions are dangerous could be really concerning).

[edit]
We see in the ME world people pushing various protocols and making unjustifiable claims and there is a danger that this project could pick up on those issues.
 
Adrian said:
The thing that worries me is lots of people attribute improvements to stuff they are trying at the time and perhaps don't report on the things they try otherwise (or simply try stuff when they are improving). Thismakes it very hard to make any sensible intepretation of data collected from clinics. If the plan was to do an assessment to work out potential candidates for testing then this would be fine. But to try to extract trends from very low quality data is hard. It could be argued that with sufficient patients perhaps the noise is reduced and a trend could emerge but I'm not sure I buy into that argument. Things people try are also not independant, i.e. things to try spread by word of mouth, and equally reporting of results isn't in that perception can be affected by those around and what others are saying on social media.

So I think this could end up as a very difficult study leading to false hope and a belief that some interventions help when they don't (which if the interventions are dangerous could be really concerning).

[edit]
We see in the ME world people pushing various protocols and making unjustifiable claims and there is a danger that this project could pick up on those issues.
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Brenda Delaney did some good tweets months ago, when Long Covid was emerging and links/recognition of ME. I don't have the links.
He was one of the signatories to the Doctors as patients article in BMJ Sep 2020: https://www.bmj.com/content/370/bmj...0402de74e4e18476f29b5b39&keytype2=tf_ipsecsha

He was one of a few doctors that we (Obeat and I) sent a copy of the JHP special PACE edition to, with brief covering letter.
 
It's one of the smallest studies but at least it should be competent. IIRC Altmann is a long hauler and seems solid. But it so small, I don't see how it could achieve anything more than the studies that are already under way, certainly can't do more than the OMF alone.

 
It's slowly dawning on long haulers that medical research may not be on the level people expect it to be. It took me years to fully realize this. Good thing we have years of work to leverage, if this had happened a few years earlier things would have been so much harder.

And the thing that not only is this true, the more context you add the worse it is. They haven't seen the worst of it yet.

 
Scotland: UWS project
merged thread
Long Covid’s detrimental effect on energy and activity levels is being examined by University of the West of Scotland (UWS) researchers in a bid to help improve extreme fatigue symptoms linked with the condition.

The study, which is part of a new cohort of 15 projects totalling nearly £20 million funded by the National Institute for Health Research (NIHR), will involve activity tracking to help those with Long Covid who are reporting low energy levels after undertaking day-to-day tasks.
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Using a technique called adaptive pacing therapy – commonly used to treat those with Chronic Fatigue Syndrome – researchers at UWS will send ‘just-in-time’ notifications to individuals’ mobile devices when they are at risk of overexertion, in order to help alleviate symptoms and aid their long-term recovery.
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full article
https://www.renfrewshire24.co.uk/20...-of-20-million-funding-to-examine-long-covid/
 
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This project sounds pretty pointless.

"The University of the West Scotland is one of Scotland's most vocational higher education institutions, boasting strong links with industrial and commercial partners. Students can take the option of a year's paid work placement as part of many degrees. Computing is a key strength, now formally acknowledged by an excellent teaching assessment. The institution also has Scotland’s largest school of health, nursing and midwifery. Accounting and finance research was rated world-class in the last assessments, achieving the highest ranking of any subject at a modern university in Scotland."

Don't imagine there will be much biomedical SCIENCE input.
 
I freaking knew they were going to distort pacing as GET-lite and present it as a treatment/therapy. Because words mean nothing and everything is made up. This study will not even use proper pacing so it's a complete waste, PACE v2, basically.

And the hubris of that lie:
commonly used to treat those with Chronic Fatigue Syndrome
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Obviously, we've always been at war with East Asia.
 
MEMarge said:
This project sounds pretty pointless.

"The University of the West Scotland is one of Scotland's most vocational higher education institutions, boasting strong links with industrial and commercial partners. Students can take the option of a year's paid work placement as part of many degrees. Computing is a key strength, now formally acknowledged by an excellent teaching assessment. The institution also has Scotland’s largest school of health, nursing and midwifery. Accounting and finance research was rated world-class in the last assessments, achieving the highest ranking of any subject at a modern university in Scotland."

Don't imagine there will be much biomedical SCIENCE input.
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Ironically one of their campuses can do CPET as part of the sports performance courses !
 
Snow Leopard said:
It's likely to be hype. It would be the first time that a cytokine test has sufficient sensitivity for any illness besides the (by-definition) Cytokine release syndrome (commonly known as "cytokine storm").
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This is the often-seen Patterson and Yo, if anyone is wondering. Their claim is over cytokine patterns.

As a rule of thumb, when the results are hyped on TV before evidence is provided, it's not worth bothering. Anything that works will light up like a million watt light bulb anyway.
 
rvallee said:
I freaking knew they were going to distort pacing as GET-lite and present it as a treatment/therapy.
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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.
 
Sly Saint said:
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.
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I' ve been in touch with ME Action Scotland who will do some digging .
 
Sly Saint said:
Scotland: UWS project
merged thread



full article
https://www.renfrewshire24.co.uk/20...-of-20-million-funding-to-examine-long-covid/
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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??
 
The pacing study is interesting but I'm pretty skeptical of how useful it'll be. Whether you trigger PEM is dependent on cognitive and physical activities, and I think trying to quantify exertion with a fitbit is probably sufficiently inaccurate that it probably isn't the best way to pace. It could be a helpful technique for some situations and for some people though. I hope the approach they take to pacing is not the kind of pacing which was done in the PACE trial, which seemed like it was almost set up to fail.

Research that compared different techniques of pacing would be good. Pacing is treated as if it's this single concept, but I think in reality you can take a wide variety of approaches to it, and some clarity on the best approaches would be good. That isn't easy research to conduct though, and runs into many of the methodological difficulties other ME/CFS research faces.
 
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