Edinburgh Long Covid Study, led by Alan Carson

Andy

Andy

Senior Member (Voting rights)
About the project
People with Long Covid have described experiencing cognitive problems, including problems with memory, concentration, and judgement.

The aim of this study is to explain cognitive impairment in Long Covid and to find out whether the cognitive impairment is associated with an underlying condition. This can help doctors to prescribe the right treatment.

Project team
The project is led by Professor Alan Carson.

University of Edinburgh team members are Laura McWhirter, Nadine Cosette, David Gillespie, Alison Green, David Hunt, Craig Ritchie, Jon Stone, Joanna Wardlaw, Catherine Pennington, and Siddharthan Chandran.

https://www.annerowlingclinic.org/research-trials/find-project/edinburgh-long-covid-study


From the Participant Information Sheet

"What is the purpose of the study? You are being asked to take part in a study that aims to produce the most detailed clinical description of persistent cognitive symptoms after a positive COVID-19 diagnosis to date. Problems with memory and cognition have been demonstrated to be the most common and disabling complaints after COVID-19. It is possible that the cognitive symptoms of ‘long Covid’ are in fact due to several alternative conditions. It is important to be able to identify and separate these conditions in order to provide evidence-based treatment and effective rehabilitation strategies that are tailored to them. It is hoped that this study will improve the understanding of underlying causes of cognitive symptoms in the ‘long Covid’ population."

https://www.annerowlingclinic.org/s...IS_final copy REC and R D approved (002).pdf


From the Health Research Authority ethics decision

Clinical phenotyping of cognitive disorders in 'long covid' [COVID-19]

Research summary

People with ‘Long Covid’ describe memory and concentration problems. Studies examining how people perform on memory and intelligence tests have found that patients who have had COVID-19 perform worse than those who have not. But to date, we don’t know why they have poorer cognitive function.

Memory and concentration symptoms in ‘Long Covid’ are likely to have different causes in different people. Some may have had direct infection or inflammation of the brain, or blockages to blood vessels in the brain. In others, underlying brain disease may have been ‘unmasked’ by COVID-19. Some may have functional cognitive disorders, where memory and concentration problems are the result of changes in the brain’s ‘software’. In others, anxiety, low mood or fatigue may contribute to their symptoms. Each of these conditions has a different outcome and treatment.

This study aims to closely examine 100 people with persisting cognitive symptoms after COVID-19, assessing the cognitive problems as well as markers of brain damage, inflammation, and underlying degenerative brain disease.

We expect this study to provide scientific evidence to allow health services to provide targeted and effective treatment and rehabilitation for people with memory and concentration symptoms as part of ‘Long Covid’.

https://www.hra.nhs.uk/planning-and...f-cognitive-disorders-in-long-covid-covid-19/
 
Andy said:
Some may have functional cognitive disorders, where memory and concentration problems are the result of changes in the brain’s ‘software’.
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I'm a former software developer and I don't know what that means. Machines have an orderly separation between software and hardware. Brains don't. This analogy is nonsense to anybody who understands how computers actually work.
 
RedFox said:
I'm a former software developer and I don't know what that means. Machines have an orderly separation between software and hardware. Brains don't. This analogy is nonsense to anybody who understands how computers actually work.
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The analogy is nonsense and I suspect not helpful when thinking about the problem. Its one that is used by the BPS crowd to suggest they are taking things seriously when they claim CBT can cure ME. And I wouldn't trust any research done by this group. The translation in their minds is clearly that you think yourself ill.


Although I will say in a modern computer system the separations between hardware and software are not simple (for example, the main CPU will have microcode which is essentially software and even microcode patches that fix hardware issues! Also there are many microcontrollers (disk, keyboard, USB, etc which will have firmware).

Andy said:
cognitive symptoms of ‘long Covid’ are in fact due to several alternative conditions. It is important to be able to identify and separate these
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I worry this is a route for them to say that some long covid patients are depressed or have a 'dissociative disorder' thus trying to dismiss the actual problems. We know their diagnostic questionnaires for things like depression aren't good enough to separate depression from being ill (We've discussed things like HADS on many occasions although I would hope they are not using that scale here).
Andy said:
Some may have functional cognitive disorders, where memory and concentration problems are the result of changes in the brain’s ‘software’. In others, anxiety, low mood or fatigue may contribute to their symptoms. Each of these conditions has a different outcome and treatment.
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Yes this is about trying to dismiss symptoms and say it can all be cured with CBT when we know there is no evidence for that.

I do think a good study could be done on cognitive aspects of long covid or ME as a longitudinal study by setting tasks and timing etc to see have different mental abilities vary (and correlate this with activity and reported levels of sickness).

From the patient info sheet they do an MRI scan to look for brain damage which I suspect is so they can claim that nothing physical is wrong (and they even say there may be things 'incidental' to symptoms). But perhaps I'm being too cynical. What could be interesting is to have a set of 100 MRI scans that could be used by others but they would need comparing with norm - I do, for example, wonder if throwing them (with normal scans) at a deep neural network would find something although you would need more than 100 samples (even with transfer learning).

They are also doing a lumber puncture again to look for brain damage (proteins associated with brain damage). If I remember correctly Lipkin found some signals in cerebrospinal fluid but they don't say what they are looking for and whether they would look for other things that have been reported. Again it feels like a lost opportunity to look for things that may be different and potential markers rather than looking for things they don't expect to find.

e released into the blood following damage particularly to myelin which is the brain wiring’s ‘insulating’ materia
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Wouldn't this be MS if that were the case?
 
RedFox said:
I'm a former software developer and I don't know what that means. Machines have an orderly separation between software and hardware. Brains don't. This analogy is nonsense to anybody who understands how computers actually work.
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Yup. It's not even just wrong, it's comically wrong. Von Neumann architecture is so radically different from biology it has nothing whatsoever to do. I don't get how this analogy is so popular, it's so mediocre. And that's just classical computers, quantum computers are even more radically different.

I guess it's only popular because of how popular magical thinking about the mystical powers of the mind are.

I also don't understand the point of doing studies like this where the "researchers" plainly state the conclusion they will reach. It's purely manufacturing reality, explicitly facilitating pseudoscience for its own sake. Medicine has lost the plot, barely seems interested in treating illness anymore, it's all lifestyle and perception and a bunch of quackery taking place of real work.
 
Andy said:
£290,941

Source: https://www.cso.scot.nhs.uk/outputs/cso-funded-research/long-covid-call/
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Ugh. What a terrible mix. Even has an exercise trial. Completely wasted.

I'll never stop being shocked over how provincial medicine is, even research. Everyone does their small thing in their small corner, leverage nothing, share nothing with others. Small teams with small projects that never lead anywhere. But if you want maximum redundancy and wastefulness, they've taken it to an art form. Like building a large building for a single event, then bringing it all down and starting over from scratch every time. Nothing builds on itself. It's maddening. Of course there's never any progress given these conditions.

It doesn't take too much imagination to think of how awful scientific progress would be if other fields of science were the same. If physics and astronomy had never built a single giant telescope, let alone one out there in space, no particle accelerators, nothing big, only small thinking allowed. I don't get it. I guess it must follow the eternal conviction that they already know everything so there's no need for that. What a waste of opportunity, it's quite literally making our civilization worse.
 
rvallee said:
Ugh. What a terrible mix. Even has an exercise trial. Completely wasted.

I'll never stop being shocked over how provincial medicine is, even research. Everyone does their small thing in their small corner, leverage nothing, share nothing with others. Small teams with small projects that never lead anywhere. But if you want maximum redundancy and wastefulness, they've taken it to an art form. Like building a large building for a single event, then bringing it all down and starting over from scratch every time. Nothing builds on itself. It's maddening. Of course there's never any progress given these conditions.

It doesn't take too much imagination to think of how awful scientific progress would be if other fields of science were the same. If physics and astronomy had never built a single giant telescope, let alone one out there in space, no particle accelerators, nothing big, only small thinking allowed. I don't get it. I guess it must follow the eternal conviction that they already know everything so there's no need for that. What a waste of opportunity, it's quite literally making our civilization worse.
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Plus the fact that physicists apparently like p-values of 3 in 10 million, rather than .05.
 
RedFox said:
I'm a former software developer and I don't know what that means. Machines have an orderly separation between software and hardware. Brains don't. This analogy is nonsense to anybody who understands how computers actually work.
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That has been my position for 30 years now. Its a nonsense description, confusing and conflating the underlying issues.
 
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