Long Covid

[zahir]

Paper based on a study of people with long covid in the Netherlands and Belgium.

Persistent symptoms 3 months after a SARS-CoV-2 infection: the post-COVID-19 syndrome?

Background Many patients with COVID-19 do not require hospitalisation, let alone have undergone COVID-19 testing. There is anecdotal evidence that patients with “mild” COVID-19 may complain about persistent symptoms, even weeks after the infection. This suggests that symptoms during the...

openres.ersjournals.com

 

[zahir]

BBC Radio 4 - File on 4, Covid 19: The Long Road to Recovery

After coronavirus, the survivors left with life-changing and long-term conditions.

www.bbc.co.uk

After Coronavirus, the survivors left with life-changing and long term conditions. The physical and psychological aftermath of Covid 19 and the pressure on rehabilitation services. Nearly 3 million people in the UK have had symptomatic coronavirus. More than one hundred thousand so severely, they needed hospital treatment.

This is a new disease, so doctors are guessing when it comes to the symptoms people will have long term.

But it’s clear this virus has a sting in its tail. The sickest patients have damage to their lungs and kidney which could be permanent. Some research shows the risk of heart attack or stroke is high. File on 4 talks to people living with the after effects of Covid 19 who say surviving was just the beginning. There are a multiotide of physical after effects - and many more have suffered post-traumatic stress disorder. People describe flashbacks to the ITU, seeing people die, overhearing their last goodbyes with loved ones on phone or the internet.

Patients who were hospitalised get follow-ups, and referrals for rehabilitation and possibly, counselling.

But what of the hundreds of thousands of other people who fell ill and who, if it weren’t a pandemic, might have gone to hospital, but were told to stay at home?

Researchers say there are at least 300,000 people who have had symptoms of Coronavirus for more than a month – so called Long Haul Covid.

Many are young and previously fit. They say they had a mild case of the virus. But they have been floored by the symptoms that followed – breathlessness, racing heart, weakness. And they're struggling to get care and support.

 

[LDC]

RSM webinar on long covid. I can't say I was convinced by the doctor advocating CBT and graded exercise.

That's also part of the NICE guidelines for treatment for ME/CFS and it's a somewhat controversial position, although supported by evidence.

 

[existentialist]

That's also part of the NICE guidelines for treatment for ME/CFS and it's a somewhat controversial position, although supported by evidence.

A big problem about the ME/CFS thing is that there is often a frustration amongst sufferers that their problems are not seen as "real" - that, by even suggesting a psychological component, the significance of their distress is not being recognised.

I see it from the other end - a proportion of those who come to me for therapy also have ME or CFS diagnoses. Some of them are happy to have that aspect of their lives brought into the therapy work; others will insist that it's a purely medical problem and become very defensive about it being brought into the psychological space...

 

[elbows]

A tricky area for sure. If it happened to me I would be prickly about it being described on that front in certain ignorant ways, but I would be keen to explore the psychological side of things as I wouldnt want to get myself stuck in a reinforcement & hopelessness doom spiral.

 

[muscovyduck]

obvs a tangent but I do wonder how many people with "chronic fatigue" are misdiagnosed - they tried slapping that label on me when I kept pushing for investigations into what turned out to be something else that could be fixed with lifestyle changes and cbt. It was very obviously just a way to try and get me out of certain very specialist and completely oversubscribed clinics and back into less suitable care. If I hadn't kept pushing I'd have been one of those people saying "I had chronic fatigue and CBT worked for me!!!" wouldn't I? Not fair on me and not fair on actual ME sufferers

 

[existentialist]

obvs a tangent but I do wonder how many people with "chronic fatigue" are misdiagnosed - they tried slapping that label on me when I kept pushing for investigations into what turned out to be something else that could be fixed with lifestyle changes and cbt. It was very obviously just a way to try and get me out of certain very specialist and completely oversubscribed clinics and back into less suitable care. If I hadn't kept pushing I'd have been one of those people saying "I had chronic fatigue and CBT worked for me!!!" wouldn't I? Not fair on me and not fair on actual ME sufferers

One of the big gotchas with ME/CFS (I'm not a medic, but I do spend a lot of time working in a surgery...you pick stuff up) is that there's no diagnostic test, no marker that they can pick up and use to diagnose it. It's what's called a "differential diagnosis" - essentially, when you've ruled everything out, then what you're left with is ME/CFS. I think, as the condition has become more acknowledged, that medical people are more able to reach that diagnosis, where in the past they'd be more likely to dismiss it as a psychological condition.

Much of that has been true, albeit on a massively shorter timescale, the situation with Long Covid. People - including a lot of medics - have been running up against brick walls with their mental fatigue, lassitude, depression, which was just not seen as Covid-19-related when the main narrative around it was hospitals packing out ICUs with people on ventilators. We have had more time now to take a longer perspective, and it is clear that a lot of people who had Covid-19 are displaying a range of symptoms...which are not a million miles away from what ME/CFS sufferers have experienced. I believe that there is a classification for "post-viral fatigue syndrome" now, which might help the acceptance of the symptoms of things like ME, CFS, and Long Covid.

And there is bound to be a psychological component. It may not be that the psychology stuff is causal to the fatigue syndromes (though I am no longer surprised by how many ME sufferers experienced loss, trauma, or depression at some point prior to developing symptoms), but the syndromes are inevitably going to have a psychological effect, particularly since so many of them mirror those of more severe forms of depression, for example. So the two are probably intertwined, to some extent, and a two-pronged approach could be the best way forward.

 

[UnderOpenSky]

Do we have a thread at the moment about dealing with it on a personal level or is this the closest we have?

I'm trying to not let it grind me down. And what I'd really like more then anything, silly as it sounds, is a confirmation that I've had it. I had tests, but probably to late. I can't get an antibodies test on the NHS and apparently they aren't always accurate anyway. I suppose what I want to know is that how I'm feeling is the result of "mild" covid and not something else.

I'm going to have to give up on running I think, but it's been incredibly important to me to help deal with other things. So I decided today that Id go for a walk instead. Couple of hours in the Peak District with the dog, a part of a route I'd normally do in fell running kit. It was nice to get out, especially with the Autum weather and the dog loves it. Spent the afternoon on the sofa dozing!

 

[muscovyduck]

One of the big gotchas with ME/CFS (I'm not a medic, but I do spend a lot of time working in a surgery...you pick stuff up) is that there's no diagnostic test, no marker that they can pick up and use to diagnose it. It's what's called a "differential diagnosis" - essentially, when you've ruled everything out, then what you're left with is ME/CFS. I think, as the condition has become more acknowledged, that medical people are more able to reach that diagnosis, where in the past they'd be more likely to dismiss it as a psychological condition.

Much of that has been true, albeit on a massively shorter timescale, the situation with Long Covid. People - including a lot of medics - have been running up against brick walls with their mental fatigue, lassitude, depression, which was just not seen as Covid-19-related when the main narrative around it was hospitals packing out ICUs with people on ventilators. We have had more time now to take a longer perspective, and it is clear that a lot of people who had Covid-19 are displaying a range of symptoms...which are not a million miles away from what ME/CFS sufferers have experienced. I believe that there is a classification for "post-viral fatigue syndrome" now, which might help the acceptance of the symptoms of things like ME, CFS, and Long Covid.

And there is bound to be a psychological component. It may not be that the psychology stuff is causal to the fatigue syndromes (though I am no longer surprised by how many ME sufferers experienced loss, trauma, or depression at some point prior to developing symptoms), but the syndromes are inevitably going to have a psychological effect, particularly since so many of them mirror those of more severe forms of depression, for example. So the two are probably intertwined, to some extent, and a two-pronged approach could be the best way forward.

Yep that was my understanding of it - they explained that it was what you were left with once you ruled everything out, referred to the results of some of the easier tests I'd had (eg diabetes, iron definciency) and didn't run any more involved ones for other conditions. Full on got the diagnosis of chronic fatigue from the consultant on my first visit, which felt wrong. I remember the arguments about whether I was fatigued by depression or depressed by fatigue too, which seemed to go on for years - both views would come up as excuses to not investigate things or to hand me over to a different medical team. After the diagnosis I kept pushing for investigations to rule out other health problems and lo and behold we got the answer they didn't want to go looking for! One of the two conditions was something that meant the consultant couldn't shift me off their list. Nightmare to try and navigate all that when you're in that condition.

So many different issues are wrapped up in it all, there was definitely an underlying political motivation in the form of the NHS being stripped to the bone and therefore encouraging consultants to take whatever shortcut neccessary to get patients out their department, gender/xenophobia and how it affects healthcare, the fact that society is set up in a way where those labels for certain conditions become way more important and loaded than they should be. How institutions like the DWP, toxic workplaces and more informal structures like families play off this drama for their own means, traumatising patients who then get defensive about the issue, which makes it more difficult to have a frank and honest conversation with healthcare workers and get useful support. I'm cautiously optimistic about "post viral fatigue" as a classification and how that might help things but it's heartbreaking that so many more people are going to be suffering.

 

[UnderOpenSky]

That's shit muscovyduck. To complicate things further my partner had endometriosis so her health isn't great anyway. Despite this she still got palmed off by her last hospital that it was psychological rather then actual pain. She's suffering more then me, she's just better at living with poor health.

 

[frogwoman]

Thats similar to what my mum has had with her chronic pain issues.

 

[UnderOpenSky]

Thats similar to what my mum has had with her chronic pain issues.

On one hand I can see the real benefit for some people for some people, if done sympathetically, as pain meds are only part of the solution. However that's not how it was done here.

 

[elbows]

There is also an overlap between the whole 'failure to find out whats wrong with you' and the long term underfunded, half-arsed approach to thorough diagnostic testing in this country, which in turn was one of the reasons we didnt have a proper mass testing plan and lab resources to handle this pandemic.

I suppose this general national failing was especially noticeable when the world of internet medical information came of age, and a seaarch for some specific conditions, symptoms, drugs etc might lead us to a site designed with patients from a different country in mind. 'your doctor will test you to see if...' was a theme that didnt always match my personal experiences, where was the 'your GP will guess and then guess again and maybe test if you come back because the original remedy didnt help' option we know so well?

Not that I would want to stretch that point too far, there are some conditions where this country has a more suitable default path to proper diagnosis. But the already very large gaps in human understanding of various things in the medical realm are made worse in this country by various forms of deliberate ignorance and skimping that are baked into the system, certain attitudes, certainly funding etc.

Its a shame that 'the holistic approach' ended up a wanky term rather than a foundation of how we approach stuff. It could plug some gaps, although I expect one of the reasons its not done enough is the sheer scale of the knowledge gaps in both domains.

 

[existentialist]

I would say this, wouldn't I, but when medicine can overcome its desire to departmentalise different aspects of patient presentation, and - yes - take a more holistic approach to things, it will be the better for it.

Practitioners who came into the profession 10-20 years ago are better at acknowledging these factors, but the system doesn't reflect that - psychiatry is one department, pain management anotyer, immunology yet another, and our internal market basically becomes an incentive to offload "difficult" patients elsewhere, rather than collaborating in a multi-disciplinary way.

 

[UnderOpenSky]

I would say this, wouldn't I, but when medicine can overcome its desire to departmentalise different aspects of patient presentation, and - yes - take a more holistic approach to things, it will be the better for it.

Practitioners who came into the profession 10-20 years ago are better at acknowledging these factors, but the system doesn't reflect that - psychiatry is one department, pain management anotyer, immunology yet another, and our internal market basically becomes an incentive to offload "difficult" patients elsewhere, rather than collaborating in a multi-disciplinary way.

Well centers of excellence are supposed to work in a multi disciplinary way, but it does rather raise the question why we need them.

 

[existentialist]

Well centers of excellence are supposed to work in a multi disciplinary way, but it does rather raise the question why we need them.

There are exceptions, but I always get the sense that when something gets "Multidisciplinary", it's as if it is regarded as an exception to the norm.

 

[UnderOpenSky]

There are exceptions, but I always get the sense that when something gets "Multidisciplinary", it's as if it is regarded as an exception to the norm.

Yes. That was kind of my point. If we have centers of excellence delivering this, what happens to the poor bastards who don't push hard enough to get referred here.

 

[zahir]

Long covid in India.

Long Covid: Why India should worry about post-coronavirus care

Experts say India needs more post-Covid care centres as many patients are reporting lasting symptoms.

www.bbc.co.uk

 

[LDC]

There's been a piece on the long term problems of post-covid infection on Radio 4 this morning.

BBC Radio 4 - Long Covid

Adam Rutherford explores the science behind why recovery from covid can be so protracted.

www.bbc.co.uk

 

[elbows]

 

[wtfftw]

That's also part of the NICE guidelines for treatment for ME/CFS and it's a somewhat controversial position, although supported by evidence.

Evidence for GET and CBT

PACE trial and Cochrane Review | Action for M.E.

www.actionforme.org.uk

 

[elbows]

Coronavirus: Specialist 'long Covid' clinics to be set up in England

They will offer support for people with long-term health problems after infection with coronavirus.

www.bbc.co.uk

 

[frogwoman]

Good discussion of long covid about 40 minutes in.

 

[frogwoman]

Mom loses hearing in one ear after COVID-19 and needs a hearing aid

Meredith Harrell, 42, will need a hearing aid in one ear after losing her hearing due to a mild COVID-19 infection that presented no other symptoms.

www.dailymail.co.uk

Sorry for the source. This is nasty

 

[The way forward]

Sorry BUT in my ignorance I just wanted to help others and wanted to say I have found the way out of having the long term symptoms
for myself. In natural cancer care quite often a treatment will be delivered by a carrier which is then allowed into the cancer cell by said carrier. I tried this on myself with the covid worked like a charm. The covid lives off of glucose and covers itself with a masking protein thus the problem of long term effects. Use just enough maple syrup to sweeten the mixture of 12oz h2o to 9drops h2o2 food grade . It will kill the covid it will take several sessions it is eliminated via the stool which will have a really bad aroma. Live life to it's fullest.

 

[Monkeygrinder's Organ]

Sorry BUT in my ignorance I just wanted to help others and wanted to say I have found the way out of having the long term symptoms
for myself. In natural cancer care quite often a treatment will be delivered by a carrier which is then allowed into the cancer cell by said carrier. I tried this on myself with the covid worked like a charm. The covid lives off of glucose and covers itself with a masking protein thus the problem of long term effects. Use just enough maple syrup to sweeten the mixture of 12oz h2o to 9drops h2o2 food grade . It will kill the covid it will take several sessions it is eliminated via the stool which will have a really bad aroma. Live life to it's fullest.

Fuck off.

 

[bimble]

Reported. I like maple syrup but.

 

[kenny g]

Do we have a thread at the moment about dealing with it on a personal level or is this the closest we have?

I'm trying to not let it grind me down. And what I'd really like more then anything, silly as it sounds, is a confirmation that I've had it. I had tests, but probably to late. I can't get an antibodies test on the NHS and apparently they aren't always accurate anyway. I suppose what I want to know is that how I'm feeling is the result of "mild" covid and not something else.

I'm going to have to give up on running I think, but it's been incredibly important to me to help deal with other things. So I decided today that Id go for a walk instead. Couple of hours in the Peak District with the dog, a part of a route I'd normally do in fell running kit. It was nice to get out, especially with the Autum weather and the dog loves it. Spent the afternoon on the sofa dozing!

Yes and thrice yes. One of the dangers of being into seriously high intensity training is you miss out on slower and equally positive activities.

 

[existentialist]

Sorry BUT in my ignorance I just wanted to help others and wanted to say I have found the way out of having the long term symptoms
for myself. In natural cancer care quite often a treatment will be delivered by a carrier which is then allowed into the cancer cell by said carrier. I tried this on myself with the covid worked like a charm. The covid lives off of glucose and covers itself with a masking protein thus the problem of long term effects. Use just enough maple syrup to sweeten the mixture of 12oz h2o to 9drops h2o2 food grade . It will kill the covid it will take several sessions it is eliminated via the stool which will have a really bad aroma. Live life to it's fullest.

In your fucking dreams, pal. And sort your cunting apostrophes out, while you're at it.

 

[UnderOpenSky]

Yes and thrice yes. One of the dangers of being into seriously high intensity training is you miss out on slower and equally positive activities.

Well I don't know if I'd have ever called my running seriously high intensity, but I do need to find other things. If just for the sake of waistline if nothing else.