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

Podcast: Pediatrics Research Roundup, Diagnosing and Treating Long COVID – Episode 64

Discussion in 'Resources' started by Sly Saint, Aug 16, 2022.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,584
    Location:
    UK
    https://www.aap.org/en/pages/podcas...h-roundup-diagnosing-and-treating-long-covid/

    long covid bit starts at 12.00 mins in.
     
    Last edited: Aug 16, 2022
    ahimsa, Peter Trewhitt and Kalliope like this.
  2. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,279
    Location:
    Norway
    I believe this podcast is from last year, but can't find a thread/post on it on the forum. Looking forward to listen to it.
     
    Peter Trewhitt and Sly Saint like this.
  3. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,279
    Location:
    Norway
    This was an informative talk with Dr. Rowe. Nothing new for us, but probably very useful for clinicians.

    Dr. Rowe says there is a variety of chronic symptoms after Covid. He distinguishes between Long Covid as in symptoms from the acute infection in for instance patients who were hospitalised, "but there's another group that didn't get hospitalised or had relatively mild symptoms after Covid, but get hammered by orthostatic intolerance, light-headedness, fatigue, and brain fog. And these are symptoms that we are very familiar with because those are what characterise what's now called ME/CFS"

    Talks about how a clinician can recognise Long Covid in explaining how they proceed with ME patients. There must be a profound change in how much the patients could tolerate before compared with now. He describes PEM as a hallmark of ME and which he also believes is a hallmark of Long Covid.

    Goes into detail about orthostatic intolerance and how to recognise this as clinician. "As we joke with our residents: Any adolescent who can't go to the mall, has an organic problem until proven otherwise". Explains the NASA lean test.

    Says healthy people upright for 30 minutes have a 6% drop in how much blood flow gets to the brain whilst ME/CFS patients and some of the ones they've studied with Long Covid have a reduction of 26%.

    When it comes to treatments he says POTS and dysautonomia are big drivers of symptoms. He also recommends symptom treatment for headaches, insomnia etc.

    Says many patients have some puzzling tightness in their movements of the limbs and spine. Gentle physiotherapy can help as long as it's not focused on boot camp training, which doesn't work at all for these patients.

    Warns against reinventing the wheel when it comes to Long Covid, especially in the wrong way. Says 25 years ago people thought "these lazy people" just needed some CBT and to get off the couch. "That was completely unfair to patients at the time. It wasn't based in any empiric science. And it's turned out that over time any effect size from cognitive behavioural therapy as an intention to cure the illness has been tiny. The benefits are not sustained. And the biggest trial, the PACE trial that was published in the Lancet in 2011, has turned out to be the subject of a lot of controversy because of research misconduct".

    Says trying CBT and GET in Long Covid patients because it "works" in ME, is a recipe for keeping them sick.

    One of the interviewers says he trained through that period where ME/CFS was thought to be purely psychiatric or made up altogether, and is curious about what drew Dr. Rowe to disorders a lot of people though of as a dead end. Dr. Rowe says he was running a diagnostic clinic where he saw patients with recurrent spells of fainting back to back with those who met criteria for CFS and realised all were getting symptomatic in the same positions of quiet upright posture. The ME patients had more problems than the fainters when they too got tilt table tests, and many improved when they got the same treatment as the fainters.

    Emphasises that this is a serious problem and that the patients need to be believed and get proper treatment. He says it's atrocious how ME patients have been neglected and that they need to be folded in to the effort to treat and rehabilitate Long Covid.
     
    Last edited: Aug 19, 2022
    J.G, cfsandmore, ahimsa and 6 others like this.

Share This Page