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

This post has been copied and some following posts moved from this thread: Possibility of ME or PVFS after COVID-19, Long Covid


"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/

 

?

 

Sounds familiar.

Also sounds familiar.

 

Wow. Fascinating. A case study in self-gaslighting and being faced with irreconcilable cognitive dissonance.

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.

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.

You mean it's not just fatigue? What?! If only millions of people had been saying that for decades. Which they have!

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.

 

https://twitter.com/user/status/1257729841161547776

https://twitter.com/user/status/1257770349229309952

 

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.

 

That's what I thought.

It reminds me of a - actually well meaning - doctor that I've talked to in the very beginning of my illness.

I had asked her about CFS. She said "you're way too ill for CFS".

 

My main GP in the 1990s at one time thought I was not ill enough to have ME and then when I deteriorated was too ill to have it

 

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.

 

Told by a (female) GP: ‘no, you’re actually ill, not like those women who just won’t get out of bed’

 

Funny, my old doctor told me, "You can't be that ill, you've only got CFS" when I explained I couldn't get to his office for an appointment and needed a home visit.

 

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?

 

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.

 

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.

 

Are PVFS and ME/CFS 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?