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

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.

 

Can anyone confirm if there's any research anywhere into PEM in LongCovid?

 

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.

 

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.

https://twitter.com/user/status/1416737100670582788

 

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.

https://twitter.com/user/status/1417142144335237123

 

Scotland: UWS project
merged thread

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

 

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.

 

From the little information available, it sounds like this will be fitbit-assisted pacing. I think this could be a useful study.

 

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:

Obviously, we've always been at war with East Asia.

 

Ironically one of their campuses can do CPET as part of the sports performance courses !

 

I wonder if there is a protocol ?

 

https://uk.yahoo.com/news/long-covid-blood-test-possible-155823414.html
Long Covid blood test possible after scientists find condition may be linked to immune system

 

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").

 

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.

 

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.

 

I' ve been in touch with ME Action Scotland who will do some digging .

 

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.