Trisha Greenhalgh on ME/CFS and Long Covid

Discussion in 'UK clinics and doctors' started by Helene, Jan 13, 2021.

  1. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    14,837
    Location:
    UK West Midlands
    It will be interesting to see whether she actually tackles this when she realises how entrenched in their views they are or if she does a 180 a la Garner
     
    Saz94, Ariel, alktipping and 4 others like this.
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    15,175
    Location:
    London, UK
    I was thinking more of a Buddhist Prayer Wheel
    images.jpeg
     
    FMMM1, Amw66, alktipping and 2 others like this.
  3. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    13,659
    Location:
    Canada
    Why early? It's still happening. So why only early on? Odd.

    There was also that early paper that featured a whopper such as (paraphrasing) long haulers "felt" like their fatigue was different from CFS and thus viewed it as different. Without explanation. And in fact in contradiction with what was known, and since then very much debunked.

    The author was one TG, or something like that. Should look into that, it's not good to misinform people in scientific literature, especially as a mere expression of opinion, exactly like what Carson and his buddies do.
     
    Last edited: Jan 2, 2023
    RedFox, Amw66, Ariel and 3 others like this.
  4. Trish

    Trish Moderator Staff Member

    Messages:
    55,414
    Location:
    UK
    Perhaps she wants ro see whether views changed over 3 years.
     
  5. Milo

    Milo Senior Member (Voting Rights)

    Messages:
    2,138
    This is not the conventional way you do a literature review, just saying.
     
    Saz94, Robert 1973, Amw66 and 4 others like this.
  6. dave30th

    dave30th Senior Member (Voting Rights)

    Messages:
    2,447
    Can someone post Alan Carson's tweets in this exchange? He blocked me a long time ago. thanks!
     
  7. Trish

    Trish Moderator Staff Member

    Messages:
    55,414
    Location:
    UK
    Maybe the problem is your use of dismissed which implies one form of aetiology as more worthy than another- as far as neurological symptoms go there is mounting clinical and scientific evidence of a functional cause but this doesn’t mean the patient is any less sick or deserving

    jnnp.bmj.com/content/jnnp/early/2022/08/25/jnnp-2021-327899.full.pdf…. I think the contents of this are contestable but the group have done some of best early descriptive work if long covid

    Would describe fnd as per dsm 5. Autoimmunity is a mechanism not a disorder and depends on how you define- eg could argue depression as an autoimmune condition - as to MS etc no of course not but can have MS and FND comorbidly ( prob in around 10% of MS cases)

    In the scenario you describe i would consider removing AEDs as negligent. That said i ve never encountered any serious epileptologist or FND specialist suggesting what you outline

    Think one needs to be careful to separate out recognised clinical syndromes from putative mechanism from incidentals. Ie finding say primary MS different from a modestly raised inflammatory marker from say a pineal cyst

    Its a 2 way street- whilst there can be a bewildering array of novel mechanisms the clinical expression of neuropathological dysfunctikn remains a constant and careful description of this informs how we might consider such mechanisms ie tremor with entrainment tells us something
     
    Andy, dave30th and Peter Trewhitt like this.
  8. Trish

    Trish Moderator Staff Member

    Messages:
    55,414
    Location:
    UK
    bobbler, dave30th and Peter Trewhitt like this.
  9. Trish

    Trish Moderator Staff Member

    Messages:
    55,414
    Location:
    UK
    More Carson
    Well since there are no validated treatments and i ve been explaining i dont think LC is one thing….
    Its a 2 way street- whilst there can be a bewildering array of novel mechanisms the clinical expression of neuropathological dysfunctikn remains a constant and careful description of this informs how we might consider such mechanisms ie tremor with entrainment tells us something
    No functional disorders must have a biology and that is becoming increasingly understood and inclydes structural and functional brain changes, inflammatory cascades and genetics

    I’ll look in more detail but encapsulates my view that not helpful to think of ling covid as an entity but a heterogeneous group of conditions that are not necessarily closely related and extrapolation from one group to another not necessarily helpful

    However part of the problem is fundamental misunderstanding of how brain works and the meaningless separation of brain and mind as demonstrated elegantly in this study


    [​IMG]
    academic.oup.com
    Fear conditioning as a pathogenic mechanism in the postural tachycardia syndrome
    Norcliffe et al. demonstrate that in patients with postural tachycardia syndrome, the increase in heart rate that o
     
    oldtimer and Peter Trewhitt like this.
  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    15,175
    Location:
    London, UK
    Well, however unconventional the method, Greenhalgh seems to have saved herself the task of analysis. Carson has done it for her. A bit like a fly coming to sit on a leaf in front of a chameleon I would say.
     
  11. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    6,416
    Location:
    UK
    I don't have a Twitter account, so I can't be blocked, and I can see everything that those with accounts have posted publicly.

    These are the first four responses to the original tweet on this subject, as I see them.

    upload_2023-1-2_21-56-43.png

    I am shocked by the blasé tone of "Psychology is key to any recovery of course, but I'm sure you know that"
     
    MEMarge, Saz94, Robert 1973 and 9 others like this.
  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    15,175
    Location:
    London, UK
    Round, like a circle in a spiral
    Like a wheel within a wheel
    Never ending or beginning
    On an ever-spinning reel
    Like a snowball down a mountain
    Or a carnival balloon
    Like a carousel that's burning
    Running rings around the moon
    Like a clock whose hands are sweeping
    Past the minutes of its face
    And the world is like an apple
    Whirling silently in space

    Like the circles that you find

    In the windmills of your mind.

    ...
    Half-remembered names and faces
    But to whom do they belong
    When you knew that it was over
    Were you suddenly aware
    That the autumn leaves were turning
    To the color of her hair
    Like a circle in a spiral
    Like a wheel within a wheel
    Never ending or beginning
    On an ever-spinning reel
    As the images unwind

    Like the circles that you find

    In the windmills of your mind.
     
    Snow Leopard, MEMarge, Saz94 and 8 others like this.
  13. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    6,416
    Location:
    UK
    If X is blocked by TG does that mean that X can't physically reply to TG, or that TG can be replied to by X but TG won't see any replies by X?
     
    Peter Trewhitt and Milo like this.
  14. Trish

    Trish Moderator Staff Member

    Messages:
    55,414
    Location:
    UK
    If X is blocked by Y, then X can neither see nor reply to Y.
     
  15. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    6,416
    Location:
    UK
    Thanks, Trish. :thumbup:
     
    Peter Trewhitt likes this.
  16. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

    Messages:
    5,761
    Location:
    Aotearoa New Zealand
    Person X can be muted by person Y, so that Y won't see X's posts (one-way).
    Blocking X means that Y won't see X, but also X can't see Y (two-way). Blocking also prevents replies to and quote-tweets of Y's content by X.
     
  17. dave30th

    dave30th Senior Member (Voting Rights)

    Messages:
    2,447
    Tbanks @Trish!!!

    Carson actually linked to the NYU study in his tweet as an example of an elegant demonstration of something???
     
  18. Milo

    Milo Senior Member (Voting Rights)

    Messages:
    2,138
    If X is blocked by TG, it means that X is free to play with Y, Z and whatever mathematical formula they desire. X is also free to delve into chemistry and X is therefore a free radical. :nerd:
     
  19. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    13,659
    Location:
    Canada
    Which would require also looking at how things have been recently, not just early.

    Because it hasn't changed. As her buddy Carson trying to sell how all the cool kids think it is clearly shows.
     
  20. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    13,659
    Location:
    Canada
    No, it's really not. It's actually as superfluous as what people think of the color red. What a bunch of BS that says everything about the intent. I'm not sure she should be encouraged to write anything, in fact it would be far better if she'd stay out of a topic she clearly can't be bothered to actually learn anything about.

    If anything she should be strongly encouraged to stay out of this on account that any contribution she makes would be bad for patients, but as a result of mass-banning the people most involved on this issue, she wouldn't even hear that.

    Ugh. What is it with people who think their contributions are a gift to the world, even when they don't bother putting any effort into it?
     

Share This Page