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Long Covid

To claim a purely psychological cause for a condition that manifests real physical consequences is a hell of a claim that needs backing up with solid evidence. And that evidence needs to include theorised and tested mechanisms that can be falsified. Otherwise, you're claiming that something can't be purely physiological because you don't know its pathway... and then replacing this with something more esoteric whose pathway is even more obscure.

I am no neuroscientist, so it's difficult to talk about this. However, I have yet to see a convincing argument for what the mechanism is that turns thoughts into debilitating lethargy. I am aware of a number of ways in which intrapsychic processes can manifest embodied outcomes, but these are quite clearly bounded in their scope and the outcomes are more scattergun than they are specific, repeated, targeted symptoms. For example, overexposure to cortisol reduces the body's ability to self-regulate future cortisol, which can have the impact of tachycardia. But this is a clear and measurable biological mechanism, not just saying, "oh, you're stressed". And yes, thoughts can, for example, impact the amygdala and the hypothalamus, resulting in an adrenocortical cascade. But so what? How does that relate to lethargy? It seems way more likely that a virus has caused an as-yet-unmeasurable epigenetic or other intracellular effect that is impacting the mitochondria or protein production or some other physiological effect than to make up a neurological mystery path.
 
I feel I need to clarify my position a bit on this.

What I am getting at when I bitch about the discounting of psychological aspects isn't simply dumping the stuff that's too hard to diagnose into some "it's all in the mind" bucket. It's about recognising that there is an, often complex, interplay between psychological state and physical wellbeing. There is increasing evidence that all kinds of conditions and health problems ARE linked to stress, for example, but at the moment the factoring in of psychological aspects comes a LONG way down the diagnostic decision tree. I see this in my work all the time - there's a tacit assumption that, once you've ruled out physical illness, that's the time to suggest psychological interventions. Ideally, those would be being incorporated from the outset.

It's not helped by the fact that even straightforward psychological help, even for things as "simple" as anxiety, are chronically underfunded, and thus very hard to come by, which is bound to influence the decision-making processes of clinicians - what's the point, after all, of recognising that someone's chronic stress is playing a part in their physical illness if the waiting list for trauma treatment is 2 years? What doctor is going to want to say "Well, I can see that it's possible your early life trauma is a factor in your chronic back pain (say), but you'll have to wait 2 years to be seen"? Easier all round to treat such things as a purely physical problem than have to do the hard yards around inaccessible treatments.

I quite often have conversations with medical colleagues - eg diabetic nurses - who talk about the strong relationship between diabetes and mental health. It's a two-way street, but the vast number of diabetics will only EVER get dietary advice and medication, despite the fact that they're presenting with psychological distress, either from before diagnosis, or as a result of it (and we mostly don't know, because people aren't really looking that hard at it).

Link to a potentially interesting study between cortisol levels and diabetes here: Stress hormones and risk of type 2 diabetes (although, perhaps tellingly, they're looking at organic causes for overproduction of cortisol, which does seem to me to be potentially missing the point). FWIW, I suspect that my own diabetes was brought on by chronic stress, as there were few other lifestyle factors that changed around that time.
 
existentialist said:
there's a tacit assumption that, once you've ruled out physical illness, that's the time to suggest psychological interventions.
Click to expand...
Both aspects of that are usually handled too crudely, because in addition to what you focus on quite reasonably in your post, 'ruled out physical illness' usually means no such thing, rather the people looking at your case have run out of ideas and default assumptions. So lurching from one mistaken set of assumptions (physical) to another (mental) without proof on either front. This can involve what effectively amounts to gaslighting the patient, and we've already heard anecdotes about this in regards some long covid sufferers. eg when routine diagnostics cant find a physical cause, default to 'its in your head'. "We cannot find the problem so here is a new assumption" is simply not good enough. But some then get lucky enough to then undergo more appropriate diagnostics tests which reveal a physical problem after all.
 
Just on a personal level (maybe this is the wrong thread to ask, might be better off in nobbing and sobbing) is there a higher risk for someone who has previously had long-term on and off issues with post viral fatigue (probably due to glandular fever) and CFS? I have EDS (Hypermobility) which is known to be linked with that sort of fatigue condition.

Not sure I can take another hit to my energy levels tbh.

I only got Covid less than 2 weeks ago though so it might be too soon to start worrying about long-term problems and the fact I haven't recovered yet (my OH got over his quicker while I still feel like I struggle to walk far or exert myself).

Hopefully I am just worrying a bit prematurely, but knowing I have had similar issues previously is making me feel a bit nervous, like I might be predisposed to it or something.
 
Epona said:
Just on a personal level (maybe this is the wrong thread to ask, might be better off in nobbing and sobbing) is there a higher risk for someone who has previously had long-term on and off issues with post viral fatigue (probably due to glandular fever) and CFS? I have EDS (Hypermobility) which is known to be linked with that sort of fatigue condition.

Not sure I can take another hit to my energy levels tbh.

I only got Covid less than 2 weeks ago though so it might be too soon to start worrying about long-term problems and the fact I haven't recovered yet (my OH got over his quicker while I still feel like I struggle to walk far or exert myself).

Hopefully I am just worrying a bit prematurely, but knowing I have had similar issues previously is making me feel a bit nervous, like I might be predisposed to it or something.
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It's pretty common for people to need a good two months or so to recover from covid, so I wouldn't start thinking about proper 'long covid' unless there were significant symptoms besides fatigue and maybe a bit of breathlessness in that period, or if the fatigue starts getting worse again rather than better. Whether or not you are pre-disposed I would just rest as much as possible and cross your fingers - rest is the best cure at this point whether you are prone to LC or on the way to recovery.
 
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This story is not about long Covid but I'm putting it here because there are parallels in terms of some of the stuff we've recently mentioned in regards failure to diagnose properly or be believed:

www.theguardian.com

The doctor who was told her illness was ‘all in her head’ – and is transforming the treatment of her rare genetic condition

For 20 years, Alissa Zingman suffered painful symptoms that were dismissed by fellow doctors. Then she was warned there was little chance of improvement. Now her pioneering clinic offers hope to those with Ehlers Danlos Syndrome
www.theguardian.com www.theguardian.com
 
Long covid people who have had a second round of covid, how has that affected you? I hadn't been that worried about catching covid again since having all my jabs but since testing positive yesterday I've got quite anxious about long term effects.

I first had covid on December 2020. First 6 months or so of long covid were particularly bad. By October 2021 I was finally at the point where it wasn't limiting my activities anymore. I still have joint pain but it's more annoying than something that stops me doing things.

I can't face going through all that again.
 
Another article on brain changes even with mild cases (but earlier in the pandemic so not covering later variants). Long term implications unclear, with attempts to reassure filling that gap.

www.bbc.co.uk

Scans reveal how Covid may change the brain

Even after a mild infection, the overall size of the brain had shrunk, researchers found.
www.bbc.co.uk
 
Oula said:
Long covid people who have had a second round of covid, how has that affected you? I hadn't been that worried about catching covid again since having all my jabs but since testing positive yesterday I've got quite anxious about long term effects.

I first had covid on December 2020. First 6 months or so of long covid were particularly bad. By October 2021 I was finally at the point where it wasn't limiting my activities anymore. I still have joint pain but it's more annoying than something that stops me doing things.

I can't face going through all that again.
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Hey, I had it again in December. Tbh although it took about five weeks before I was fully recovered, I then went back to the baseline I'd been at, so didn't feel that it had made things worse. If anything I've seen some improvement now I'm a couple of months after the second bout and feeling a bit better than I was in November.

Good luck with it, don't spend too much time worrying about worst case scenarios - it probably won't happen :)
 
Brainaddict said:
Hey, I had it again in December. Tbh although it took about five weeks before I was fully recovered, I then went back to the baseline I'd been at, so didn't feel that it had made things worse. If anything I've seen some improvement now I'm a couple of months after the second bout and feeling a bit better than I was in November.

Good luck with it, don't spend too much time worrying about worst case scenarios - it probably won't happen :)
Click to expand...
Thank you. That's reassuring.
I'm due an operation in the next few months as well so really don't want to feel any worse
 
kabbes said:
For example, overexposure to cortisol reduces the body's ability to self-regulate future cortisol, which can have the impact of tachycardia. But this is a clear and measurable biological mechanism, not just saying, "oh, you're stressed". And yes, thoughts can, for example, impact the amygdala and the hypothalamus, resulting in an adrenocortical cascade. But so what? How does that relate to lethargy?
Click to expand...
In that those things make you tired after they happen. That's not neuroscientist level stuff surely.
 
kabbes said:
To claim a purely psychological cause for a condition that manifests real physical consequences is a hell of a claim that needs backing up with solid evidence. And that evidence needs to include theorised and tested mechanisms that can be falsified. Otherwise, you're claiming that something can't be purely physiological because you don't know its pathway... and then replacing this with something more esoteric whose pathway is even more obscure.

I am no neuroscientist, so it's difficult to talk about this. However, I have yet to see a convincing argument for what the mechanism is that turns thoughts into debilitating lethargy. I am aware of a number of ways in which intrapsychic processes can manifest embodied outcomes, but these are quite clearly bounded in their scope and the outcomes are more scattergun than they are specific, repeated, targeted symptoms. For example, overexposure to cortisol reduces the body's ability to self-regulate future cortisol, which can have the impact of tachycardia. But this is a clear and measurable biological mechanism, not just saying, "oh, you're stressed". And yes, thoughts can, for example, impact the amygdala and the hypothalamus, resulting in an adrenocortical cascade. But so what? How does that relate to lethargy? It seems way more likely that a virus has caused an as-yet-unmeasurable epigenetic or other intracellular effect that is impacting the mitochondria or protein production or some other physiological effect than to make up a neurological mystery path.
Click to expand...
I don’t think this is the thread to have this discussion as it feels a bit disrespectful (or maybe not?)…

but there’s unequivocal evidence that thoughts are linked to arousal. Anxiety is the obvious one, due to the link with the HPA axis. But depression is definitely associated with feeling tired/ lethargy. Fear has a pretty immediate physiological effect.

I think it’s absolutely reasonable to question whether fatigue equates to tiredness (both are symptoms so subjective and not testable). And fwiw my hat would be in the ring of immune dysfunction being the pathological process underneath fatigue. It’s a symptom of a lot of autoimmune disease like RA after all (and the fatigue I get with RA is qualitatively different to tiredness ime).

But aside from that, psychological and social factors absolutely will have biological impacts. Epigenetics will be one mechanism- maternal stroking turns genes on and off, as does abuse- interesting evidence for methylation in promotor of glucocorticoid receptor gene for example etc. Altho I absolutely concede that there are too many ‘associations’ and not enough ‘causal pathways’- but we’re in the first decade so let’s give it a chance!

But epigenetics is only one mechanism. Neuroendocrinology is much better characterised.

I’ve been dabbling in a bit of Mendelian randomisation recently (as you do) as a technique that will help us determine causal relationships between exposures and outcomes for complex traits- like depression, hypertension, psychosis etc. That’s been interesting.

It’s all brilliantly complicated. I do see you state ‘purely psychological cause’ but I’m ignoring that as nothing has a purely anything cause. And I say that as someone whose not even a fan of the biopsychosocial model.
 
Edie said:
I don’t think this is the thread to have this discussion as it feels a bit disrespectful (or maybe not?)…

but there’s unequivocal evidence that thoughts are linked to arousal. Anxiety is the obvious one, due to the link with the HPA axis. But depression is definitely associated with feeling tired/ lethargy. Fear has a pretty immediate physiological effect.

I think it’s absolutely reasonable to question whether fatigue equates to tiredness (both are symptoms so subjective and not testable). And fwiw my hat would be in the ring of immune dysfunction being the pathological process underneath fatigue. It’s a symptom of a lot of autoimmune disease like RA after all (and the fatigue I get with RA is qualitatively different to tiredness ime).

But aside from that, psychological and social factors absolutely will have biological impacts. Epigenetics will be one mechanism- maternal stroking turns genes on and off, as does abuse- interesting evidence for methylation in promotor of glucocorticoid receptor gene for example etc. Altho I absolutely concede that there are too many ‘associations’ and not enough ‘causal pathways’- but we’re in the first decade so let’s give it a chance!

But epigenetics is only one mechanism. Neuroendocrinology is much better characterised.

I’ve been dabbling in a bit of Mendelian randomisation recently (as you do) as a technique that will help us determine causal relationships between exposures and outcomes for complex traits- like depression, hypertension, psychosis etc. That’s been interesting.

It’s all brilliantly complicated. I do see you state ‘purely psychological cause’ but I’m ignoring that as nothing has a purely anything cause. And I say that as someone whose not even a fan of the biopsychosocial model.
Click to expand...
To be clear, there’s nothing in there I disagree with. The line I’m drawing here is not around the idea of some kind of mind-body duality. The problem is that doctors routinely extrapolate from what you’re saying to postulating a psychological origin for a problem. Not a psychological component as part of the aetiology but psychology as the starting point. And not even a psychiatric origin, I emphasise, but a psychological one. They tell people (particularly women) that the underlying cause for why they are (biologically) feeling shit is that they have had psychological trauma and this has prompted the biological problems (eg “your anxiety of what you face at work is the ultimate underlying cause”). In doing so, they heavily overstep both their own expertise and any kind of evidence. The clinincal theorising can even be sometimes taken further to a speculative psychoanalytic origin (eg “the ultimate origin of why you can’t get out of bed lies with the way you were treated as a child”) — a diagnosis that has all the hallmarks of pseudoscience. It is this overstepping of both evidence and expertise on the part of clinicians that I object to. By assuming psychological origins to the observed physical problem, they will not pay proper attention to looking for biological origins. And that is psychology.
 
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kabbes said:
To be clear, there’s nothing in there I disagree with. The line I’m drawing here is not around the idea of some kind of mind-body duality. The problem is that doctors routinely extrapolate from what you’re saying to postulating a psychological origin for a problem. Not a psychological component as part of the aetiology but psychology as the starting point. And not even a psychiatric origin, I emphasise, but a psychological one. They tell people (particularly women) that the underlying cause for why they are (biologically) feeling shit is that they have had psychological trauma and this has prompted the biological problems (eg “your anxiety of what you face at work is the ultimate underlying cause”). In doing so, they heavily overstep both their own expertise and any kind of evidence. The clinincal theorising can even be sometimes taken further to a speculative psychoanalytic origin (eg “the ultimate origin of you can’t get out of bed lies with the way you were treated as a child”) — a diagnosis that has all the hallmarks of pseudoscience. It is this overstepping of both evidence and expertise on the part of clinicians that I object to. By assuming psychological origins to the observed physical problem, they will not pay proper attention to looking for biological origins. And that is psychology.
Click to expand...
Absolutely agree with that.
 
Radio 4 program all about Long Covid

www.bbc.co.uk

BBC Radio 4 - Inside Health, Long Covid revisited

It's a long Covid reunion on Inside Health.
www.bbc.co.uk www.bbc.co.uk

I've not been following this thread, the bit I thought was interesting, the expert believe that long covid (fatigue going on for months) and chronic fatigue syndrome/ME were likely to be the same family of conditions with a different trigger, based on preliminary studies. (around the 9 minute mark in the audio)
 
Very interesting article about Ebstein Barr/Glandular fever, which also touches on the link with long covid.

Quite a few people with long covid seem to have had glandular fever before (I def did) and the article touches on the topic of viral persistence and viral reactivation with EBV.

In other news, German girl who I went on a hike with has a friend working on the trials of a drug which is being used to cure long covid. She said her friend told her informally that everyone who has been given it has made a massive recovery after just one session. Pretty amazing. I believe they are planning further trials. So there is hope out there, people.
 
Yes, the Berlin Cures drug looks interesting, and if it does work would be some fairly strong evidence of LC as an autoimmune condition. Interesting the NHS head of long covid research in the radio 4 feature above was largely on board with investigating the physiological basis of long covid, which I was very pleased to hear, yet was a bit dismissive of it being an autoimmune condition for what seemed like the slightly flaky reason that the vaccines (which stimulate the immune system) had helped some people - but this is a minority and some people they make worse, so I was a bit surprised that he emphasised that so much.
 
I have just tried a 'rest cure' for long covid. I went away by myself for two weeks and did nothing in a sunny place by the sea. Basically trying Victorian treatment methods where all else have failed :D
I wanted to do a month but life didn't allow it, and even after two weeks my energy level does seem significantly better than before I went away, I am now doing quite a lot and managing it quite well. So I recommend the Victorian treatment if you can, though I realise that for some people the going away itself would be too much, and for many the opportunity won't be available.
 
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Brainaddict said:
I have just tried a 'rest cure' for long covid. I went away by myself for two weeks and did nothing in a sunny place by the sea. Basically trying Victorian treatment methods where all else have failed :D
I wanted to do a month but life didn't allow it, and even after two weeks my energy level does seem significantly better than before I went away, I am now doing quite a lot and managing it quite well. So I recommend the Victorian treatment if you can, though I realise that for some people the going away itself would be too much, and for many the opportunity won't be available.
Click to expand...
so great to hear! was planning the same thing but it hasnt happened yet, but my body keeps telling me it would do wonders. havent had two full weeks holiday in god knows how long, twenty years probably.

i had nasty cold/flu over xmas, another round of it in end of Jan and I think possible Covid start of March - if not Covid chest infection with lingering cough - really exhausting and hard to tell what long covid progress there is as these all take their toll and bring back fatigue and breathing problems.

that said today I feel as good as I have in a long time...enough about me, mainly posting to say two weeks in the sun with no lurgy just feels like a must...really glad to hear its done something for you
 
If it’s ok, could I please ask those of you who menstruate if your long covid symptoms get worse around ovulation and/or premenstrually/your period? Particularly if any of those are migraine or appear cardiac related?

I’m not quite yet 12 weeks since COVID but I’m pretty sure I’m noticing a pattern during my my menstrual cycles since, specifically a) my monthly migraine (possibly triggered by suspected COVID back in April 2020) has moved to the pre-ovulation stage, b) they’ve got substantially worse with two day prodrome, aura etc, and c) pretty sure I’m having a type of palpitation called a PCV, largely confined to those two key points of my cycle.
 
Agent Sparrow said:
If it’s ok, could I please ask those of you who menstruate if your long covid symptoms get worse around ovulation and/or premenstrually/your period? Particularly if any of those are migraine or appear cardiac related?

I’m not quite yet 12 weeks since COVID but I’m pretty sure I’m noticing a pattern during my my menstrual cycles since, specifically a) my monthly migraine (possibly triggered by suspected COVID back in April 2020) has moved to the pre-ovulation stage, b) they’ve got substantially worse with two day prodrome, aura etc, and c) pretty sure I’m having a type of palpitation called a PCV, largely confined to those two key points of my cycle.
Click to expand...
Yes.
My long covid symptoms are different but have always been worse just before my period
 
Oula said:
Yes.
My long covid symptoms are different but have always been worse just before my period
Click to expand...
Another thing to add to that wonderful time of the month :( Thank you for responding.

Tbf the cardiac type things do appear to be getting better compared to my first cycle after infection, so fingers crossed this is just part of a longer recovery period. However, the migraines are worsening and my guess would be that they’ll stay. I had an ah ha moment earlier today when I realised they were near bang on a month apart.

Anyway, GP appointment now made to discuss.
 
Agent Sparrow said:
Another thing to add to that wonderful time of the month :( Thank you for responding.

Tbf the cardiac type things do appear to be getting better compared to my first cycle after infection, so fingers crossed this is just part of a longer recovery period. However, the migraines are worsening and my guess would be that they’ll stay. I had an ah ha moment earlier today when I realised they were near bang on a month apart.

Anyway, GP appointment now made to discuss.
Click to expand...
Sorry to hear that. Hopefully it will get better by itself. If it doesn't, one approach could be to try a couple of easily obtainable things that are both anti-inflammatory and anti-coagulant, namely aspirin and turmeric supplements.
 
Agent Sparrow there’s a strong hormonal link with migraines anyway - and they often worsen with perimenopause. You’re probably too young for that to be a factor but it’s worth bearing in mind.
 
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