Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

[V.R.T.]

The message given out by medical leaders and charities that ME/CFS is incurable is irresponsible and harms vulnerable people. just STOP IT.

I am rapidly beginning to lose my patience with this messaging.

Seeing the prophets of the false ideology that has deeply harmed me claiming that the information that would have saved my functioning is dangerous and causes harm is just too repulsive for words. The idea that it is knowing the truth that is making people sick. This is morally indefensible. At least Garner is a true believer who has been converted by his 'miraculous' recovery. History will judge him as a fool and the others as far worse.

 

[Utsikt]

I am rapidly beginning to lose my patience with this messaging.

This comes from a place of understanding and similar experiences: consider not engaging with it and put the thread on ignore. Garner is not worth your attention, energy and health. Nothing you can do is going to stop him. But change will come eventually.

 

[V.R.T.]

This comes from a place of understanding and similar experiences: consider not engaging with it and put the thread on ignore. Garner is not worth your attention, energy and health. Nothing you can do is going to stop him. But change will come eventually.

I actually do my best to avoid all psychosomatic threads. Today I have accidentally clicked through onto two of them and had a bit of a rant. You are right of course but I do feel a bit better now.

 

[Utsikt]

I actually do my best to avoid all psychosomatic threads. Today I have accidentally clicked through onto two of them and had a bit of a rant. You are right of course but I do feel a bit better now.

I’m glad you feel better!

 

[Mij]

Many narratives of recovery from me/cfs longcovid! I feel for those stuck: it's a frightening place. But the charities and crowd-funded ideologues who claim to represent you are giving one-sided, polarized views that take away your agency.

 

[Mij]

Claims he was 'beaten up' by Long Covid for 10 months and he was given an explanation that transformed his life.

I recovered from Covid infection after around 6 months. I didn't need an explanation.

 

[MrMagoo]

Claims he was 'beaten up' by Long Covid for 10 months and he was given an explanation that transformed his life.

I recovered from Covid infection after around 6 months. I didn't need an explanation.

For someone who was beaten up he certainly was out and about and on holiday in the Caribbean.

Also - look at me! I was in the Manchester Evening News back in March! Here’s a photo of the headline. It’s not a link to the article! I don’t even live in Manchester?!?!?

 

[Hutan]

There is a link to the article though. I note the photos say 'submitted', and they look to have been professionally done - I assume that whoever is funding Garner on this crusade helped him put together a press release.

“I got this illness that just bashed me around and made me feel absolutely awful in a way that I’d never felt before,” he says. “I thought it would be finished in 12 or 14 days or 21 days and it just didn’t stop. It went on and on and on and on.

“Some days I’d feel all right and the next day I’d be prostrated in bed, headachey, aching all over and pains in my back. This sort of being beaten up - being abused by the virus - just didn’t stop.”

Paul, at that time a professor at the Liverpool School of Tropical Medicine, wrote about his symptoms for a medical journal and was one of the first people to report having Long Covid - also known as post Covid-19 syndrome - a condition characterised by symptoms such as extreme tiredness, shortness of breath, ‘brain fog’, dizziness, joint pain and muscle aches - among others.

Paul says writing as a professor in infectious diseases gave some validation to the ‘weird symptoms’ he had been experiencing.

“They were hellish really,” he adds. “They didn’t really make any sense in any way shape or form in terms of any disease I’d had or anything I had recognised in books.”

So, his symptoms 'didn't make sense in any way shape or form in terms of any disease I'd had or anything I had recognised in books'. And yet, he was a professor of infectious diseases, and post-infection fatigue syndromes are common and well-documented. And he has a sister with ME/CFS. I think, if you have those two advantages, then it's a sad thing to not be able to make sense of the symptoms.

Paul describes how his symptoms persisted for around 10 months and would come and go. He recalls one occasion when he felt better so did a high intensity exercise session, which left him in bed for four days afterwards, ‘absolutely shattered with mind-boggling headaches’.

“There was this thing that it could be induced by overdoing it,” he goes on. “I couldn’t read, my head was a mess, I muddled up my words, I couldn’t say things straight, I couldn’t read emails.

“This was incredibly frightening and nobody was really coming up with an explanation and there was nothing much online that I could find.”

Then, at around the 10 month mark, Paul says he was given an explanation for the condition that was ‘incredibly helpful’ and would in time help lead him to his recovery. He was put in touch with a PhD candidate in psychology from Norway who had recovered from post viral fatigue syndrome some years earlier and offered to share their recovery story.

He says 'nobody was really coming up with an explanation.' And yet, plenty of people helped him in those early months, and I'm sure that he was told that he was likely to recover, but that inducing PEM was not the way to do it. And recover he did, with improvements very clearly documented well before the 10 month mark.

Paul says he believes his Long Covid symptoms were caused by the belief that this ‘mysterious virus’ had been attacking his tissues and organs - when that wasn’t the case.

“Probably what’s been going on is the dysfunctional alarm causes these nerves to fire together, and these neurological pathways in your brain become embedded, like cycle ruts in the mud. So you easily slip back into them. Added to this is the fear that the symptoms mean your tissues are damaged and you will never recover. This subconscious fear makes you hyper-vigilant and boosts your stress response so messes with your biology. It’s a really, really interesting area.”

Paul says that having this explanation - that something had malfunctioned in the alarm system in his brain - played a big part in him getting better. He started to increase his activity, even though it felt counter-intuitive, and just being outside in the sunshine made him feel happy again.

He says that, after this advice at 10 months, 'he started to increase his activity' and 'just being outside in the sunshine made him feel happy again'. But, he was snorkelling in the sun in Granada well before this!

His last blog describing his recovery was met with many critical comments - saying his views were anecdotal, ‘pseudoscience’ not backed by scientific evidence, dangerous, irresponsible and ‘inexcusably unprofessional’. Others pointed out that he may simply have recovered from post viral fatigue - as many people do - around the same time he was given this explanation.

His post was also condemned and called distressing and insulting to the many people suffering with ME/CFS (myalgic encephalitis/chronic fatigue syndrome). Paul has even received death threats over his views.

Death threats... He's such a brave saviour.

Paul says he does not believe there will ever be a drug to treat Long Covid and there will not be a test to confirm if someone has it. But he wants to get across the message that there is hope and there is a way to get better.

“All we need people to do is open up the possibility to think that their brain is involved in some way,” he says. “That then provides pathways to help them to recover.”

The newspaper appears to have got an opinion from Charles Shepherd to finish up the article with, and it's an excellent one.

Dr Charles Shepherd, a world renowned expert on ME/CFS, is the honorary medical advisor to the ME association - the health charity that advocates for people affected by the illness.

He says his view is that Long Covid is an ‘umbrella diagnosis’ which covers ‘a very wide range of clinical presentations’. At one end of the spectrum, he says, are people who have been in hospital with severe lung or heart complications from which they have not recovered and now have persisting symptoms to do with the heart and lungs - such as breathlessness and chest pain.

“At the other end of the spectrum are people who caught Covid, were managed at home and may not have been that ill, and have gone on to develop a fairly short lived post viral fatigue syndrome from which they have improved or recovered, or have developed an ME/CFS like illness from which they are not recovering,” he adds. “There are others who have both components, or have developed a post Covid psychiatric illness.”

Dr Shepherd, who developed ME after catching chickenpox from one of his hospital patients around 40 years ago, goes on to say that he provided Paul with some ‘information and guidance’ on how to manage his activity during the early stages of his illness, ‘which he found helpful’. Paul wrote about this in one of his early BMJ blogs on the subject.

“As with a proportion of people with Long Covid he has eventually improved and recovered,” Dr Shepherd adds. “But I don't believe that one person's experience of what works and what does not work can be translated to everyone with a diagnosis of Long Covid.

“As far as ME/CFS is concerned, the idea that this is a psychosomatic illness that is perpetuated by abnormal illness beliefs and behaviours has been rejected by NICE, MRC, DHSC and most medical opinion. And I don't believe that this sort of psychosomatic model of causation applies to Long Covid either.”

 

[MrMagoo]

So, his symptoms 'didn't make sense in any way shape or form in terms of any disease I'd had or anything I had recognised in books'. And yet, he was a professor of infectious diseases, and post-infection fatigue syndromes are common and well-documented. And he has a sister with ME/CFS. I think, if you have those two advantages, then it's a sad thing to not be able to make sense of the symptoms.


He says 'nobody was really coming up with an explanation.' And yet, plenty of people helped him in those early months, and I'm sure that he was told that he was likely to recover, but that inducing PEM was not the way to do it. And recover he did, with improvements very clearly documented well before the 10 month mark.



He says that, after this advice at 10 months, 'he started to increase his activity' and 'use being outside in teh sunshine made him feel happy again'. But, he was snorkelling in the sun in Granada well before this!


Death threats... He's such a brave saviour.



The newspaper appears to have got an opinion from Charles Shepherd to finish up the article with, and it's an excellent one.

I’d have like to have seen that published in the Liverpool Echo, the Facebook comments would have been hectic…

 

[bobbler]

Many narratives of recovery from me/cfs longcovid! I feel for those stuck: it's a frightening place. But the charities and crowd-funded ideologues who claim to represent you are giving one-sided, polarized views that take away your agency.

Do you think that in the absence of the actual thousands of people they'd like to claim this 'worked for' these people are hoping that if one person who didn't even have this or do this writes a thousand articles then most people will be too oblivious to notice it is the same person each time?

 

[MrMagoo]

Do you think that in the absence of the actual thousands of people they'd like to claim this 'worked for' these people are hoping that if one person who didn't even have this or do this writes a thousand articles then most people will be too oblivious to notice it is the same person each time?

He is pi$$ing in the wind

 

[bobbler]

Do you think that in the absence of the actual thousands of people they'd like to claim this 'worked for' these people are hoping that if one person who didn't even have this or do this writes a thousand articles then most people will be too oblivious to notice it is the same person each time?

it might also explain why the story keeps changing across these?

 

[MrMagoo]

it might also explain why the story keeps changing across these?

It’s just being refined each time. A muddle of “how I feel” is replacing the “what happened to me”.

 

[bobbler]

He is pi$$ing in the wind

The other thing that throws me is that everyone knows that even those who are actually very ill not only get no sympathy but offend people if they mention anything perceived by others as 'mentioning their illness' like for example having to say no to something someone else wanted from you, or explain why you can't attend x. People get fed up of you just 'looking ill'. Change the record

So I struggle to see how someone who claims 'a near miss of nearly getting' and now 4.5yrs on and if recovered as he claims fully able to do what he wants with this life, most of those around him aren't sick to the back teeth of this nonsense. And telling him so with not subtle at all hints and mickey-taking.

It's like trotting out a memory of when you had x illness more often and as if it is a bigger event for you than your wedding day. People in general just don't put up with it

 

[bobbler]

It’s just being refined each time. A muddle of “how I feel” is replacing the “what happened to me”.

Lawrence of Arabia meets a bout of covid?

 

[MrMagoo]

The other thing that throws me is that everyone knows that even those who are actually very ill not only get no sympathy but offend people if they mention anything perceived by others as 'mentioning their illness' like for example having to say no to something someone else wanted from you, or explain why you can't attend x. People get fed up of you just 'looking ill'. Change the record

So I struggle to see how someone who claims 'a near miss of nearly getting' and now 4.5yrs on and if recovered as he claims fully able to do what he wants with this life, most of those around him aren't sick to the back teeth of this nonsense. And telling him so with not subtle at all hints and mickey-taking.

It's like trotting out a memory of when you had x illness more often and as if it is a bigger event for you than your wedding day. People in general just don't put up with it

Well, it depends who he has around him. We wouldn’t know. Presumably he’s enjoying his retirement.

 

[Peter T]

But the charities and crowd-funded ideologues who claim to represent you are giving one-sided, polarized views that take away your agency.

I have just noticed ‘crowd funded ideologues’, is that you @dave30th?

Had you realised that you, along with the ME charities, are stopping us get better? You are like George Monbiot, whose articles are the cause of Long Covid, presumably even in the hundreds of thousands of sufferers who have never read them? How dare you write articles pointing out researchers’ logical and scientific fallacies and misuse of scientific method. If only you wrote jolly little stories about wonderful recoveries then we would all get better.

If only you understood the magical properties of positive thinking and had not got side tracked by such nonsense as academic rigour, we would all get better. Indeed you are likely responsible for the fact that I had not got better in the twenty five years of my ME that predated your first ‘Trial by Error’ blog. Such power to transcend barriers of language, culture and even time.

 

[MrMagoo]

Paul’s a privately funded ideologue, presumably?

 

[Peter T]

I continue to be slow on the up take. I have just noticed that Paul also ascribes ‘one-sided polarised views’ to his opponents who unfortunately lack the ability to generalise an entire universe from the microcosm of a number of months of personal experience.

What is decades of research compared to a few months of cycling and running and diving in Bermuda, topped off by a phone call to someone in Norway, whilst recovering from Covid?

If only I had had the connections to get a Norwegian to take an international phone call from me thirty years ago.

 

[Sean]

“There are others who have... ...developed a post Covid psychiatric illness.”

Can't imagine who he might be thinking of.