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The Long Haul: Solving the Puzzle of the Pandemic's Long Haulers and How They Are Changing Healthcare Forever by Ryan Prior

Discussion in 'Long Covid news' started by Sly Saint, Oct 11, 2022.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    sebaaa, oldtimer, TruthSeeker and 8 others like this.
  2. Trish

    Trish Moderator Staff Member

    Available to preorder from Barnes and Noble in the USA.
    Release date November 15 2022.
    Doesn't appear to be listed on Amazon in the UK yet.
  3. DokaGirl

    DokaGirl Senior Member (Voting Rights)

  4. John Mac

    John Mac Senior Member (Voting Rights)

    Moved from the Long Covid in the media thread

    How patients wrote ‘the first textbook’ on long COVID

    On Sept. 18, 2022, the day after President Biden pronounced the “pandemic is over” on “60 Minutes,” the #MEAction Network protested at the White House to demand Biden declare a national emergency for people with post-infection illness. In attendance was Ryan Prior. A journalist at CNN, Prior has an illness strikingly similar to long COVID, myalgic encephalomyelitis, euphemistically known in the U.S. as chronic fatigue syndrome. Now he is the author of “The Long Haul: Solving the Puzzle of the Pandemic’s Long Haulers and How They Are Changing Healthcare Forever.”

    “Long hauler,” if the phrase is still unfamiliar, refers to someone who has not recovered after a COVID infection or who has long COVID — a multisystem syndrome with myriad symptoms ranging from profound exhaustion to cognitive impairment. Both “long hauler” and “long COVID” were terms coined by patients — itself a unique phenomenon; diseases are usually named by the doctors who discover them. Although long COVID is caused by a novel virus, post-infection disease is not new. Think of post-polio syndrome and AIDS.

    In Prior’s framing, long COVID is a shadow pandemic of the one we have been marking only by hospitalizations and deaths. As COVID-19 spread across the world, Prior writes, devastating data emerged: “Hundreds of studies showed that multisystem illness could linger for weeks, months, or longer in an estimated 10 percent to 30 percent of those infected” — a mass disabling crisis. (Since he finished his book, a newer CDC study found that nearly one in five American adults infected with COVID-19 has developed long COVID.)

    In this shadow pandemic, previously healthy and active people are becoming shells of their former selves. Alarmingly, more and more patients are also meeting the criteria for myalgic encephalomyelitis (ME), which in its severe form has been compared to “late-stage AIDS, multiple sclerosis and kidney failure.”

    Prior distills nearly three years of pandemic research and interviews into a careful mosaic of patient narratives, recounting the story of long COVID alongside his own journey with ME. He also chronicles how activist-patients have led the struggle toward acknowledgment and research in the hope of finding treatment and eventually a cure. From their beds, long haulers found each other over social media, organized and began doing the impossible. Support groups created a space to be seen, to share symptoms and stories that turned into “vital information about the long-term effects of Covid-19.” They met not merely to console but to mobilize, and they collected data as “regular citizen scientists rather than the political and medical establishment.”

    Last edited by a moderator: Nov 17, 2022
  5. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Excellent read. Wish I could afford copies for some politicians.
    Peter Trewhitt and Amw66 like this.
  6. Dolphin

    Dolphin Senior Member (Voting Rights)

  7. ahimsa

    ahimsa Senior Member (Voting Rights)

    Oregon, USA
    Moved post

    Long Haul COVID: Like 'Demon Had Hijacked My Nervous System' Says Author


    Interview with Ryan Prior in Newsweek magazine.
    Last edited by a moderator: Dec 21, 2022
    RedFox, Sean, oldtimer and 3 others like this.

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