1. Guest, the 'News in Brief' for the week beginning 22nd November 2021 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

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

Discussion in 'Epidemics (including Covid-19)' started by lycaena, May 5, 2020.

  1. lycaena

    lycaena Senior Member (Voting Rights)

    Messages:
    173
    Location:
    Germany
    Last edited by a moderator: Jan 31, 2021
    Louie41 likes this.
  2. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    3,160
    ?
     
    Louie41, TigerLilea, merylg and 9 others like this.
  3. strategist

    strategist Senior Member (Voting Rights)

    Messages:
    3,981
    Sounds familiar.

    Also sounds familiar.
     
    Louie41, TigerLilea, Forbin and 12 others like this.
  4. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    7,679
    Location:
    Canada
    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.
     
  5. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    3,160
  6. strategist

    strategist Senior Member (Voting Rights)

    Messages:
    3,981
    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.
     
    Louie41, Joel, MeSci and 16 others like this.
  7. Leila

    Leila Senior Member (Voting Rights)

    Messages:
    1,025
    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".
     
  8. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    3,160
    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
     
  9. Leila

    Leila Senior Member (Voting Rights)

    Messages:
    1,025
    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.
     
  10. Londinium

    Londinium Senior Member (Voting Rights)

    Messages:
    267
    Told by a (female) GP: ‘no, you’re actually ill, not like those women who just won’t get out of bed’
     
    Louie41, Shinygleamy, MeSci and 16 others like this.
  11. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

    Messages:
    531
    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.
     
  12. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

    Messages:
    342
    Location:
    Adelaide, Australia
    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: May 6, 2020
  13. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    7,679
    Location:
    Canada
    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.
     
    Louie41, Shinygleamy, MeSci and 21 others like this.
  14. strategist

    strategist Senior Member (Voting Rights)

    Messages:
    3,981
    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.
     
  15. InitialConditions

    InitialConditions Senior Member (Voting Rights)

    Messages:
    1,040
    Location:
    North-West England
    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.
     
    Louie41, Shinygleamy, MeSci and 5 others like this.
  16. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    3,160
    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".
     
    Louie41, MeSci, MEMarge and 4 others like this.
  17. InitialConditions

    InitialConditions Senior Member (Voting Rights)

    Messages:
    1,040
    Location:
    North-West England
    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.
     
  18. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    3,160
    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.
     
    Louie41, Shinygleamy, merylg and 4 others like this.
  19. strategist

    strategist Senior Member (Voting Rights)

    Messages:
    3,981
    Are PVFS and ME/CFS similar entities?
     
    Louie41 likes this.
  20. Lidia Thompson

    Lidia Thompson Established Member (Voting Rights)

    Messages:
    46
    Location:
    Leeds
    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: May 6, 2020

Share This Page