Long Covid in the media and social media 2023

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BBC journalist Lucy Adams talks about her experiences with Long Covid, and Alan Carson: https://www.bbc.co.uk/news/uk-scotland-65058119

She said: "He was the first person who could explain in a way that I understood what was happening to me and how the communication systems between my brain and other organs in my body had gone awry."

It could be that Carson really had accurate knowledge to share with Adams, but also it could be that she just valued having what seems to be a plausible narrative through which to understand her illness. It's interesting to read her perspective, though there's not a lot of detail here.

Hopefully Adams keeps improving and is able to go on to recover.

Back when Covid started and there were early speculations about post-covid symptoms, I remember thinking this could lead to a large number of people who were ill for a while and yet would naturally go on to recover from their symptoms, with many patients attaching to different narratives for explaining why they were improving. We can also see patients who are not improving finding the idea of understanding their health appealing in a way that can make room for poorly supported beliefs.

Prof Alan Carson, of Edinburgh University, tells me he does not need to see biomarkers in the blood to know the symptoms people are experiencing are absolutely real, genuine and "appalling".

"As a doctor if you need a biomarker or a screening test to show abnormalities after two hours of listening to a patient about their symptoms, then you are clearly in the wrong job," he says.

Prof Carson compares those who suggest long Covid is "all in the head" to people who believe the earth is flat.

He was the first person who could explain in a way that I understood what was happening to me and how the communication systems between my brain and other organs in my body had gone awry.

I was one of the participants in his study looking at the impact of long Covid on the brain and as part of that I underwent an MRI scan.

It was terrifying to wait for the results but reassuring to know there was no apparent damage to my brain and I should make a full recovery.

Prof Carson agrees there is no magic bullet but believes strongly that there are tried and tested rehabilitative processes that will help people.

He also says there are very different subgroups of people with long Covid - including those who have permanent damage to lungs or other organs and people who, like me, have clear tests but ongoing symptoms.

"The problem from the beginning was the assumption that long Covid was one thing," he says.

"It is like trying to study apples by looking at a whole fruit bowl.

"There is no doubt, for example, that some hospitalised patients have been left with permanent fibrotic scarring to the lungs but lumping those patients together in studies with those who have no damage is problematic.

"It means we're left with a range of inflammatory abnormalities that we don't quite understand."

Prof Carson adds: "As a patient what you desperately need to know is 'will this treatment make me better or worse?'

"You want to know whether you are going to get better."

Constellations of symptoms
Since I wrote that first piece for the BBC, I have been contacted by hundreds of people with long Covid and ME (Myalgic encephalomyelitis), another condition which has what Prof Carson refers to as "constellations" of symptoms.

Some have suggested treatments. Some have suggested I give up and accept I will never get better. Most have asked for what I have tried and what has helped.

Clearly I am not an expert and not a scientist so I can only write about what has helped me personally and what has not.

Many people have told me they think long Covid refers to tiredness. In many ways that is the least of it.

On bad days the whole room and everything in it spins constantly and my bones split with pain.

But I have managed to do things that two years ago I thought would be impossible including returning to work - albeit part-time - and doing live TV.

Previously I was terrified I would go on air and be blindsided by the brain fog or that I would literally disappear out of shot because I was so dizzy. But I have managed.

For me, stress is the biggest trigger for worsening symptoms. I find it impossible to avoid but try to at least manage it every day.

Almost every day I go for a lie down in the afternoon. In the office I have a quiet room to rest in. Without that I would struggle to work. I am so fortunate that I have managed to keep my job, keep my home - so many others with long Covid have been far less fortunate.

I carry about an eye mask and headphones so even if I am out filming I can go and curl up in a corner and shut out the world around me because sensory overload is still very much a problem.

I swim three to four times a week. I started in September 2021 by swimming for two minutes. By September 2022 I was able to swim for an hour.

I have found that if I don't go to the pool regularly the joint pain and headaches become unbearable. Sometimes I only have the energy to do five minutes in a session but it still helps.

One of the biggest improvements for me came when I was referred to Glasgow's Centre for Integrative Care which specialises in long-term conditions.

I was helped to manage my days and my symptoms by Dr Bridie O'Dowd and their mindfulness programme.

It is not something I would have considered previously but I still try to use what I learnt every day.

As part of that she helped patients understand the need to build small things into each day which bring joy - even if it is just sitting in the garden or reading a book.

I do breathing exercises and yoga as often as I can and try to pace my activities. Singing lessons helped with my breathing and I've recently joined a choir.

A year ago I started on a drug recommended by Prof Carson which is used for a variety of different purposes but which for me has meant a huge reduction in the constant sense of vertigo.

In December last year I thought I was doing better than ever but then got Covid again and struggled to recover.
Frustrated, I tried hyperbaric oxygen.

It was an interesting experience. It felt like it helped a little but I did not come out bounding with energy nor free of pain and brain fog.

I'm aware some have found its power to be miraculous. I am glad for them. It was not a miracle cure for me.

I am far more aware now of how many people are managing silently with invisible symptoms including chronic pain and chronic fatigue for a range of conditions including long Covid.

I often feel overwhelmed by the knowledge and the fact I can't fix them nor myself.

I'm writing this not because it is comfortable or fun to write about the condition, but because I am doing so much better now - three years on - and I hope that in some small way it might help other people to know that.

Ultimately I would like to know when I will get better and if I will ever get back to 100% but I am grateful to come as far as I have.
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Some info on Bridie O'Dowd's mindfulness approach is linked to here: https://www.s4me.info/threads/“i-need-to-start-listening-to-what-my-body-is-telling-me-”-does-mindfulness-based-cognitive-therapy-help-people-with-cfs-bridie-odowd-july-2020.15830/
 
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‘There’s no end in sight’: How COVID-19 changed a Utah teacher’s life (Deseret News is a newspaper published by the Mormons - see Wikipedia).

Long article describing disease onset for a 36 yo teacher and athlete. It reads as if athletic over-exertion during the convalescent period accelerated his disease progression.

“It was just this awful game. They would do another test,” Allison said, but everything kept coming back normal, leading to doctors suggesting it might be anxiety or some similar issue.
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Esther12 said:
BBC journalist Lucy Adams talks about her experiences with Long Covid, and Alan Carson: https://www.bbc.co.uk/news/uk-scotland-65058119

She said: "He was the first person who could explain in a way that I understood what was happening to me and how the communication systems between my brain and other organs in my body had gone awry."

It could be that Carson really had accurate knowledge to share with Adams, but also it could be that she just valued having what seems to be a plausible narrative through which to understand her illness. It's interesting to read her perspective, though there's not a lot of detail here.

Hopefully Adams keeps improving and is able to go on to recover.

Back when Covid started and there were early speculations about post-covid symptoms, I remember thinking this could lead to a large number of people who were ill for a while and yet would naturally go on to recover from their symptoms, with many patients attaching to different narratives for explaining why they were improving. We can also see patients who are not improving finding the idea of understanding their health appealing in a way that can make room for poorly supported beliefs.



Some info on Bridie O'Dowd's mindfulness approach is linked to here: https://www.s4me.info/threads/“i-need-to-start-listening-to-what-my-body-is-telling-me-”-does-mindfulness-based-cognitive-therapy-help-people-with-cfs-bridie-odowd-july-2020.15830/
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I wonder what the tried and tested rehabilitative processes Alan Carson feels strongly about? How the connection between brain and body have gone awry?

Why do patients keep falling for this garbage?
 
This is an article about the lack of recognition and support for people with LC in Australia. There's no mention of ME/CFS although 'chronic fatigue' is listed as a symptom.

‘I basically never recovered’: Miquette has been suffering from long COVID for months - and she’s not the only one
‘I am a body in a bed that gets told that there’s nothing wrong with me.’

...while millions of Australians have contracted and fully recovered from the debilitating disease, others are still suffering from long COVID and lack the medical and financial support they need to recover their lives from a global pandemic which everyone seems all too keen to forget.
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Ariel said:
I don't think it's so obvious. People are vulnerable and sick and easily manipulated. They don't know all of this. All you need to do is say you believe them and not be dismissive. The psychological relief does the work.
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A dude pushing the mythical psychological conversion disorder is being quoted in news media saying the exact opposite of what he's doing. Hard to fault people for falling for it, we've been sold out completely to the quack industry.

It looks like the bold new frontier, the people selling and marketing the psychosomatic belief system are going around saying the opposite of what they're doing, because the Big lie is part of the ideology. No, it's all "mysterious" and only they have the secrets. Trust them, they're experts.

It's just following the same trend as post-truth politics, there is no pretense anymore, it doesn't even matter. They can simply openly lie about everything they do and it's all accepted because it achieves an end.

The golden age of psychosomatic pseudoscience, happening at the same time as the golden age of medical disinformation and misinformation. Not a coincidence. Not even a little.
 
Ariel said:
I don't think it's so obvious. People are vulnerable and sick and easily manipulated. They don't know all of this. All you need to do is say you believe them and not be dismissive. The psychological relief does the work.
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Indeed. I didn't try to GET myself until a sympathetic (as opposed to dismissive) GP said he believed me but convinced me my symptoms were probably related to depression. I know I'm a broken record on this but it utterly ruined my life. People like me are living monuments to the danger of Carson's approach.
 
Esther12 said:
It could be that Carson really had accurate knowledge to share with Adams, but also it could be that she just valued having what seems to be a plausible narrative through which to understand her illness. It's interesting to read her perspective, though there's not a lot of detail here.
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I am not aware that there is any knowledge to share. I have heard reports like this from social contacts. Carson is clearly very good at playing the listening role. But several months later the emptiness and hypocrisy of it tend to dawn. For those who were going to get better he will score well and maybe have eased the burden along the road to recovery.
 
Jonathan Edwards said:
I am not aware that there is any knowledge to share. I have heard reports like this from social contacts. Carson is clearly very good at playing the listening role. But several months later the emptiness and hypocrisy of it tend to dawn. For those who were going to get better he will score well and maybe have eased the burden along the road to recovery.
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Professor Edwards, what do you think the British medical community makes of Carson’s approach to Long Covid? Is he an immensely respected physician in this space? Do colleagues turn to him? It seems he purports to know what causes these persistent symptoms, based on this latest article
 
Charles B. said:
Professor Edwards, what do you think the British medical community makes of Carson’s approach to Long Covid? Is he an immensely respected physician in this space? Do colleagues turn to him? It seems he purports to know what causes these persistent symptoms, based on this latest article
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I had never heard of him until I joined this forum and saw his Tweets.
I suspect the vast majority of physicians have never heard of him.
Amongst BPS enthusiasts he may be well enough known, but he may just be someone who Tweets support for the big showmen - I don't know.
 
Healing clinics are charging up to £280 to rid Long Covid sufferers of their lingering symptoms through 'nonsensical' counselling sessions

Brits with Long Covid are being charged up £280 for 'counselling' sessions which promise to 'remove' their symptoms, MailOnline can reveal.

The In the Clear clinics, which offer an alternative therapy called the Boulderstone Technique, operate out of Brighton, Tunbridge Wells, Earl's Court and Birchwood.

The 'Boulderstone Technique' — invented by a math teacher-cum-alternative healer — claims to draw on 'ancient knowledge' to unblock 'inner tension' which stops the flow of the body's energy.

Apart from Long Covid, the clinics also claim to be able to beat allergies.

They do this by holding the customers head as they recline on a treatment couch. Then the customer repeatedly touches a glass vial containing the allergen until they become 'at peace' with it.

https://www.dailymail.co.uk/health/...s-charging-280-help-Long-Covid-sufferers.html

 
It's encouraging that doctors are becoming more aware of PEM and that doctors like here are getting coverage and explicitly saying LC isn't a psychological condition.
Adam pwme said:
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Here's a transcription.

Binita Kane: Yeah, and I think to understand why we're in this situation, you always need to look back at the history of post-viral illness. So, illness post-viruses is not new: It's been around for decades. We've got a condition called ME/CFS, which has affected children for decades. The challenge has been that it's a very, very neglected area of research.

And I, as a doctor--I'm a consultant respiratory physician--I've been a doctor for over 20 years, and I never got told anything about it at any point. And we still don't teach people about it. And there's been a real derath of research as well. And so pretty much every I've learned about post-viral illnesses has been in the last couple of years. There's this real knowledge gap between the research that's out there and what people in clinical practical know and understand.

And I think, at the same time, there has been this sort of labeling of these conditions--It's almost psychological over the years. So therefore, a lot of the services that have supported children with ME have really just been therapy-based and talking-based and physio-based.

But what we know now is that some of those treatments and therapies that have been advocated in the past, like exercising and pushing people to exercise, can actually be really, really, very harmful. So in ME, that's all been taken out of the guidelines. And long Covid will be part of the same spectrum. There are definitely some differences. And so, I think the reason people are struggling is because there's just been this real silence.

And now, suddenly, we've got millions of people around the world who've got this post-viral illnesses, and there's been a massive explosion in the research. Maybe not so much in children, definitely in adults. We're starting to understand a lot more about it. And it definitely isn't a psychological illness, and I want to just say that very specifically.

Yes, of course psychology can play a part in any chronic disease or any chronic illness, and it's an important thing to address, but there are physiological and medical things going on at the root of this that we really need to understand if we're gonna treat it properly.

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Stacy Poole: ...the are. And Kat asks, "What is the best way to deal with post-exertional malaise, everybody's dreaded (sigh) symptom of long Covid?"

Binita Kane: So, just for those who don't know, PEM or post-exertional malaise (also known as post-exertional symptom exacerbation or PESE) is kind of the hallmark of long Covid and again, it's the hallmark of illness like ME/CFS.

The way I try and explain this to other people is that--imagine the child's energy levels are like a phone battery. So, a healthy child will wake up with 100% charge after sleep. Someone with ME or someone with long Covid might wake up one 50% or 20%, depending on how severe they are.

And then, absolutely everything they do during the day zaps their energy, like if you've got all your apps running on the phone. And if you don't, then, stop and recharge the energy levels regularly during the day, the battery can run out and that can cause a crash. And you can actually accumulate an energy debt as well, so it could be that they manage something, and then 24, 48 hours later, they have a big crash.

And so energy management is like a really important part of managing long Covid. And I think what I hadn't appreciated or realized is that the thinking and the cognitive exertion can be just as disabling as the physical. So even watching television when my daughter was at her worst--things that you think would be relaxing--were draining her energy. And actually, I think the therapy-led services in the NHS, this is the one bit that they really can help with. If they're a good service, you really understand PEM and understand pacing, which most of them do. That's where I think the NHS clinics can really come into their own to help manage the symptoms.

Edit: I see a moderator edited this to break up the long paragraphs. I'll keep paragraph sizes manageable in the future. I also went back and fixed my recent transcripts.
 
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