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

lycaena

Senior Member (Voting Rights)
Last edited by a moderator:
"Paul Garner: For 7 weeks I have been through a roller coaster of ill health, extreme emotions, and utter exhaustion
May 5, 2020
Paul Garner, professor of infectious diseases at Liverpool School of Tropical Medicine, discusses his experience of having covid-19"

https://blogs.bmj.com/bmj/2020/05/0...ith-the-constantly-shifting-bizarre-symptoms/
The least helpful comments were from people who explained to me that I had post viral fatigue. I knew this was wrong. There was a pattern in that period from two weeks to six weeks: feeling absolutely dreadful during the day; sleep heavily, waking with the bed drenched in sweat; getting up with a blinding headache, receding during the day, turning me into a battered ragdoll in the evening.
?
 
The illness went on and on. The symptoms changed, it was like an advent calendar, every day there was a surprise, something new. A muggy head; acutely painful calf; upset stomach; tinnitus; pins and needles; aching all over; breathlessness; dizziness; arthritis in my hands; weird sensation in the skin with synthetic materials. Gentle exercise or walking made me worse—I would feel absolutely dreadful the next day. I started talking to others. I found a marathon runner who had tried 8 km in her second week and caused her to collapse with rigors and sleep for 24 hours. I spoke to others experiencing weird symptoms, which were often discounted by those around them as anxiety and making them doubt themselves.

Sounds familiar.

I joined a Facebook page (Covid-19 Support Group (have it/had it)) full of people with these stories, some UK, some from the US. People suffering from the disease, but not believing their symptoms were real; their families thinking the symptoms were anxiety; employers telling people they had to return to work, as the two weeks for the illness was up. And the posts reflect this “I thought I was going crazy for not getting better in their time frame”; “the doctor said there is zero reason to believe it lasts this long”. And too, people report that their families do not believe their ever-changing symptoms, that it is psychological, it is the stress.

Also sounds familiar.
 
"Paul Garner: For 7 weeks I have been through a roller coaster of ill health, extreme emotions, and utter exhaustion
May 5, 2020
Paul Garner, professor of infectious diseases at Liverpool School of Tropical Medicine, discusses his experience of having covid-19"

https://blogs.bmj.com/bmj/2020/05/0...ith-the-constantly-shifting-bizarre-symptoms/
Wow. Fascinating. A case study in self-gaslighting and being faced with irreconcilable cognitive dissonance.
and the long tail is not some “post-viral fatigue syndrome”—it is the disease
That's what PVFS is, the illness simply remains, fluctuating, weird, exhausting. Remarkable how his descriptions could be found nearly verbatim talking about ME. The doubt. The insults. And in his mind it's not PVFS because it's way more serious than just fatigue. Which, yeah, we keep telling you that.
My mind was a mess. My condition deteriorated. One afternoon I suddenly developed a tachycardia, tightness in the chest, and felt so unwell I thought I was dying. My mind became foggy. I tried to google fulminating myocarditis, but couldn’t navigate the screen properly. There was nothing to do. I thought, if this is it so be it.
Wow, "catastrophizing" much. I hope this makes him understand the despair that people feel when faced with those symptoms and the resulting disbelief. Doesn't seem so.
A few hours later I woke up, alive and the tightness replaced by extreme fatigue. Every day, day after day. Sometimes I felt better and became optimistic; after all, the paralytic state had not recurred; but then the next day I felt as though someone had hit me around the head with a cricket bat. Staff at work criticised me for not being clear “make up your mind! Are you getting better or not?” I guess they were frightened too, but I really could not understand what was happening.
The illness went on and on. The symptoms changed, it was like an advent calendar, every day there was a surprise, something new. A muggy head; acutely painful calf; upset stomach; tinnitus; pins and needles; aching all over; breathlessness; dizziness; arthritis in my hands; weird sensation in the skin with synthetic materials. Gentle exercise or walking made me worse—I would feel absolutely dreadful the next day. I started talking to others. I found a marathon runner who had tried 8 km in her second week and caused her to collapse with rigors and sleep for 24 hours. I spoke to others experiencing weird symptoms, which were often discounted by those around them as anxiety and making them doubt themselves.
The least helpful comments were from people who explained to me that I had post viral fatigue. I knew this was wrong. There was a pattern in that period from two weeks to six weeks: feeling absolutely dreadful during the day; sleep heavily, waking with the bed drenched in sweat; getting up with a blinding headache, receding during the day, turning me into a battered ragdoll in the evening.
You mean it's not just fatigue? What?! If only millions of people had been saying that for decades. Which they have!
I joined a Facebook page (Covid-19 Support Group (have it/had it)) full of people with these stories, some UK, some from the US. People suffering from the disease, but not believing their symptoms were real; their families thinking the symptoms were anxiety; employers telling people they had to return to work, as the two weeks for the illness was up. And the posts reflect this “I thought I was going crazy for not getting better in their time frame”; “the doctor said there is zero reason to believe it lasts this long”. And too, people report that their families do not believe their ever-changing symptoms, that it is psychological, it is the stress.

Unfortunately he seems to have convinced himself this is completely different because it's clearly not just fatigue, which is what PVFS is all about as far as the "experts" are concerned. Yikes. What a dumpster fire.

It would only take a few word changes here and there and this same testimony has been written thousands of times. Especially the disbelief and the weirdness and the fluctuating nightmare. Verbatim. Still, can't be that because it's way more serious than what the textbook says. Fascinating.
 
I'm wondering if the comment about this not being post-viral fatigue syndrome reveals his own ignorance.

He describes how other people misunderstand the illness. He thinks it's clearly not postviral fatigue syndrome. Maybe he says this because there is a mismatch between what he thinks PVFS would be like and what he is experiencing, and he decides that this means he doesn't have PFVS, but maybe his mental image of it was just as incorrect as that of the people who are now misunderstanding covid-19.
 
I found this to be so confusing in the beginning. Because I wasn't one of those "exhausted" people - I felt sick! But I wasn't one of those that can't even stand or talk anymore either.

The broad spectrum of G93.3 and to keep in mind who means what when they say "CFS" took me a long time to understand. It will be tricky in the public discussion on Post Covid patients, too, I think.
 
The least helpful comments were from people who explained to me that I had post viral fatigue. I knew this was wrong. There was a pattern in that period from two weeks to six weeks: feeling absolutely dreadful during the day; sleep heavily, waking with the bed drenched in sweat; getting up with a blinding headache, receding during the day, turning me into a battered ragdoll in the evening.

This just demonstrates that doctors don't listen to patients. I've been telling doctors that I have had continuous EBV symptoms (as well as some new symptoms that developed afterwards) ever since I first got it 20 years ago.

What part of "I caught EBV and never got better" don't they understand?
 
Last edited:
I'm wondering if the comment about this not being post-viral fatigue syndrome reveals his own ignorance.

He describes how other people misunderstand the illness. He thinks it's clearly not postviral fatigue syndrome. Maybe he says this because there is a mismatch between what he thinks PVFS would be like and what he is experiencing, and he decides that this means he doesn't have PFVS, but maybe his mental image of it was just as incorrect as that of the people who are now misunderstanding covid-19.
I thought about this more and I understand why he said it was unhelpful: he thinks PVFS is psychological.

Which is incredibly revealing because apparently he's Cochrane editor on infectious diseases, actually thinks PVFS is psychological and found it very unhelpful to be dismissed as having psychological symptoms.

Which is, wow, incredibly revealing. He found it insulting to be told the very same thing he would have told many, not realizing that he in fact misunderstands what PVFS is, because of the psychosocial nonsense that's removed all meaning from it.

And being in the UK, I wonder how he will think of the BPS steamroller heading his way.
 
Maybe he thinks PVFS is just fatigue, or he is disagreeing with people who suggested he had PVFS because those people viewed it as fatigue.

I think he thinks he is still experiencing the illness per se. Can anybody be certain he is not experiencing longer-lasting Covid symptoms or that the virus is not still there in some form or other? Of course, the longer this goes on, the less likely that is. But at the level of weeks I'd say we can't be sure.
 
I think he thinks he is still experiencing the illness per se. Can anybody be certain he is not experiencing longer-lasting Covid symptoms or that the virus is not still there in some form or other? Of course, the longer this goes on, the less likely that is. But at the level of weeks I'd say we can't be sure.
We can't be sure, but he was being pretty definite when he was saying the most unhelpful thing suggested to him was that he had a "post viral fatigue syndrome".
 
Yes, he probably has the same chip on his shoulder as most people. But highlights the issue with the name PVFS, in the same way CFS is not a helpful term.
Perhaps, but people can hold odd ideas about ME also.

Post infectious syndrome and post viral syndrome are pretty neutral terms. An infectious doctor should probably know post viral fatigue syndrome and post viral syndrome represent similar entities.
 
Merged thread

Hi folks.
I came across this opinoin piece in the BMJ by a professor suffering from post-covid symptoms.

I thought you'd be interested to see it.

https://blogs.bmj.com/bmj/2020/05/0...ith-the-constantly-shifting-bizarre-symptoms/

His account of his symptoms is so much like my experience of ME/CFS onset 30 years ago. Awful.

However, his comment, "This illness [covid-19] can last for weeks, and the long tail is not some “post-viral fatigue syndrome”—it is the disease."

and

"The least helpful comments were from people who explained to me that I had post viral fatigue. I knew this was wrong."

Both of these comments felt like a kick in the teeth.

Apart from that. it's a good piece.

I wonder if he really has recovered now. Or is his nightmare just beginning?
 
Last edited by a moderator:
Back
Top Bottom