1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 15th April 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Ed Yong: Articles on Long Covid, 2023

Discussion in 'General ME/CFS news' started by Jaybee00, Jul 27, 2023.

Tags:
Page 5 of 5
  1. Laurie P

    Laurie P Senior Member (Voting Rights)

    Messages:
    178
    Location:
    New England, USA
    Last edited: Jan 5, 2024
    Laurie P, Jan 4, 2024
    #81
    Subtropical Island, sebaaa, LJord and 14 others like this.
  2. Binkie4

    Binkie4 Senior Member (Voting Rights)

    Messages:
    2,343
    Wow. No more words.
     
    Binkie4, Jan 4, 2024
    #82
    sebaaa, Sean, bobbler and 5 others like this.
  3. Laurie P

    Laurie P Senior Member (Voting Rights)

    Messages:
    178
    Location:
    New England, USA
    Laurie P, Jan 5, 2024
    #83
    sebaaa, Starlight, EzzieD and 7 others like this.
  4. dave30th

    dave30th Senior Member (Voting Rights)

    Messages:
    2,248
    yeah, I just used the same intro. I like to post the videos on VB as well to make sure there's a record of everything there.
     
    dave30th, Jan 5, 2024
    #84
    ahimsa, Starlight, Sean and 9 others like this.
  5. Andy

    Andy Committee Member

    Messages:
    21,964
    Location:
    Hampshire, UK
    That was great, thanks Dave. And what stood out for me was that Ed so clearly understands, and explains, that PEM is so much more than fatigue.
     
    Andy, Jan 5, 2024
    #85
    Subtropical Island, sebaaa, ahimsa and 18 others like this.
  6. Trish

    Trish Moderator Staff Member

    Messages:
    52,344
    Location:
    UK
    I have just listened. Thank you @dave30th and thanks to Ed Yong.

    One thing that stood out for me was the interesting balance between the research and journalism that David has done on ME/CFS mainly focused on the false psychogenic model and bad research and its impact on patients. David has spent a lot of time reading the BPS research and investigating the UK and other European countries where that approach has dominated.

    Whereas Ed came to the subject more recently from the perspective of US LC organisations and individuals, and telling their experiences, and has more of an approach of not wanting to give attention to bad research and to focus more on teasing out and explaining patients' experiences of symptoms such as fatigue, PEM and brain fog and telling that clearly.

    Both approaches are necessary and both come to the same conclusion that ME and LC with PEM are real disabling physical conditions and that exercise therapy makes us sicker, and that pwME and pwLC are still being gaslighted by clinicians who haven't changed their mindset about exercise being good for everyone and who don't listen properly to patients.

    Ed mentioned a group of clinicians, I think he may have meant Long Covid physio who had spent their careers doing exercise therapy who have changed their view through getting LC. Did I hear that right?
     
    Trish, Jan 5, 2024
    #86
    EndME, Subtropical Island, sebaaa and 23 others like this.
  7. Kitty

    Kitty Senior Member (Voting Rights)

    Messages:
    5,402
    Location:
    UK
    Yes, I think so. That section stuck with me particularly; the notion that as soon as clinicians start suffering from the illness themselves, they become unreliable witnesses. It's a particularly vicious part of the gaslighting process.
     
    Kitty, Jan 5, 2024
    #87
    Subtropical Island, sebaaa, Sean and 15 others like this.
  8. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

    Messages:
    4,455
    Location:
    Aotearoa New Zealand
    At 15:10 —

    So there's a group called 'Long Covid Physio' that I really respect [...] Daria Oller and others. So [...] long Covid is enough of a thing that there is a group of people whose entire professional life revolves around exercise and using it as a therapeutic tool — who now have long Covid and are now recognising and saying 'in this context, if you have PEM, exercise is bad.'

    And I think the really fascinating dynamic here is: because they are now patients with these neglected illnesses, their expertise gets dismissed too, right? You should think [...] well here are the perfect sources - people who have understood this world deeply, who have used it in their careers - and are now, you know, have this epiphany because of their own personal experience - that in this context exercise can be damaging. So we should listen to them above everyone else. We should prioritise what they are saying. We should pay very close attention to what they are saying. And it just seems that there are people out there, the minute they get sick they get lumped into this bucket, that's people who are not objective, can't be believed, can't be trusted narrators of their own experiences, and it's bullshit. And it's so damaging and so frustrating to watch it happen in that way.
     
    SNT Gatchaman, Jan 5, 2024
    #88
    Subtropical Island, V.R.T., sebaaa and 21 others like this.
  9. Sean

    Sean Moderator Staff Member

    Messages:
    7,216
    Location:
    Australia
    Thank you, @dave30th & Ed Young.

    Good to hear Ed covering the biases introduced by the career selection pressures in medicine.
     
    Sean, Jan 6, 2024
    #89
    SNT Gatchaman, Subtropical Island, sebaaa and 11 others like this.
Page 5 of 5

Share This Page