1. Guest, the two part 'News in Brief' for the week beginning 15th November 2021 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Possibility of ME or PVFS after COVID-19, Long Covid

Discussion in 'Epidemics (including Covid-19)' started by Hip, Jan 21, 2020.

  1. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    2,945
    Today's Times2 (print edition page 4) and online version:

    https://www.thetimes.co.uk/article/...s-well-they-might-be-something-else-9lnf5tpw0

    Got long Covid symptoms? Well, they might be something else

    Dr Mark Porter

    Monday September 27 2021, 5.00pm, The Times

    Nearly a million people across the UK have long Covid-type symptoms, according to the latest survey by the Office for National Statistics (ONS). And for 40 per cent of them their symptoms — typically fatigue, shortness of breath, muscle aches and difficulty concentrating — have persisted for at least a year.

    However, the ONS survey depends on self-reporting rather than confirmatory tests and Professor Sir John Bell, a leading researcher from Oxford University, believes the scale of long Covid has been “overblown”. And there is growing concern among other doctors that being too quick to attribute these complaints to a post-Covid syndrome may mask myriad other, often far more treatable conditions that produce similar symptoms...


    [​IMG]
     
    Last edited: Sep 28, 2021
    Wonko, Dolphin and SNT Gatchaman like this.
  2. Wyva

    Wyva Senior Member (Voting Rights)

    Messages:
    471
    Location:
    Hungary
    Verywell Health: What Long COVID Awareness Means for People with Chronic Illnesses

    "Key Takeaways


      • People in the chronic illness community are noticing similarities between long COVID and conditions such as myalgic encephalomyelitis (ME) and fibromyalgia.
      • But people with chronic illnesses often have had to struggle for years to be taken seriously and receive a diagnosis.
      • Many hope that long COVID awareness will lead to more acceptance and better research for more conditions
    (...)

    “Doctors can’t be expected to know everything,” Muirhead says. But at the same time, once they’ve done all the tests and ruled out what they think a patient’s options might be, healthcare providers shouldn’t “turn around and tell the patient they’re making up [their condition],” she adds.


    As a doctor who has a chronic illness herself, Muirhead acknowledges she is in a unique position.


    “It was only by being on the patient side that I realized the medical profession have massively underestimated hidden disease,” she says. “I was completely ignorant to the knowledge gap between where I stood, and where [the patient] sat.”


    https://www.verywellhealth.com/long-covid-chronic-illness-research-5201370
     
    Rosie, Kalliope, alktipping and 5 others like this.
  3. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    7,632
    Location:
    Canada
    Vision issues are often discussed but there's barely any research even acknowledging them. They seem to be as present in LC as other ME populations, roughly speaking. Usually little discussed since it's not especially disabling compared to other symptoms.

    This is the first I've seen of a good visual representation of what some of it looks like. At least to me, and that guy. And I guess whoever did that image. There are probably dozens of us, even! Dozens!

     
    Ariel, Sly Saint, Sean and 7 others like this.
  4. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    7,632
    Location:
    Canada
    Same old. Just the same old. Go back 2 decades and it's the same. Go back 4 decades and it's the same, only the medium changes. Also sometimes it's presidents of medical associations saying the same, or whatever. Or professors of economics. Anyone remember that Blanchflower dude from a few years back? Yeah he was at it this week, helping his buddy Sharpe (or was it White?).

    To some, this is success. To medicine as a whole, this is success. I mean literally this is success as far as most are concerned, many are badly motivated at keeping things this way and even want to expand massively and never look back.

     
    EzzieD, Sean, Hutan and 2 others like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    7,632
    Location:
    Canada
  6. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    4,686
    Location:
    Norway
    This is a brilliant, short summary of Ed Yong's reporting on Long Covid and ME, and how research efforts must change in order to meet the patients' needs.

     
    Last edited: Sep 30, 2021
    Chezboo, EzzieD, Campanula and 15 others like this.
  7. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    7,632
    Location:
    Canada
    The Ed Yong video above is amazing. Worth watching and sharing.

    Also missed this from 2 days ago, on CNN. Article and video. CNN has a bad habit of having mindlessly inept commentators for the infotainment value but Gupta as a medical reporter is genuinely solid, seems like a good physician.


    Long Covid is a bigger problem than we thought
    https://www.cnn.com/2021/09/29/world/coronavirus-newsletter-intl-29-09-21/index.html


    Features a physician with mild LC symptoms who mentions Lyme as another example of post-infectious illness. At the 18+ month mark that even acknowledging the mass of prior evidence, not just ME and dysautonomia but literally a dozen or so post-pathogen syndromes, is still too difficult just an incredible level of inability to unhook from a belief system and look at reality as it is.

    Or to put it in meme form:

    [​IMG]
     
    EzzieD, Campanula, Ariel and 9 others like this.
  8. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    7,632
    Location:
    Canada
  9. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    4,686
    Location:
    Norway
    Time Can Breakthrough Infections Lead to Long COVID? For an Unlucky Few, Yes

    Quote:

    “Deaths and severe disease and hospitalization are…understandably what we are focused on. But Long COVID is an absolutely debilitating disease,” Iwasaki agrees. “It’s really been ignored to a large extent, and I really don’t understand why.” She says better tracking of breakthrough infections, as well as follow-up surveys that track patients’ symptoms over time (like those used in the recent Lancet study), could help increase understanding of Long COVID and the risk it poses to U.S. public health.

    Without that understanding, people who develop chronic issues after a breakthrough infection, like Zaleski and Kern, may be overlooked and left out of crucial efforts to develop treatments. The National Institutes of Health has earmarked more than a billion dollars for Long COVID research—but for it to be most effective, it needs to include a diverse, representative group of people.

    Nichols also says health officials should look to the past, drawing on the lived experience of people who developed other post-infectious chronic illnesses, like myalgic encephalomyelitis/chronic fatigue syndrome and chronic Lyme disease, to understand how to support Long COVID patients. Better access to specialized treatment centers; funding for patient-led advocacy and research groups; and collaboration with the entire chronic-disease community would all be good places to start, she says.
     
    cfsandmore, Helene, Hutan and 3 others like this.
  10. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    7,632
    Location:
    Canada
    Long haulers unite! One thing the delays to the NICE guidelines process have done is that there are far more long haulers who understand we're all in this together. Of all the things the BPS ideologues and the colleges have factored in, this is not one and it may surprise them a bit, or a lot.

    After a while, people stop expecting help from coming and, yes, justifiably, become more militant. And that's a good thing, because a small group of people challenging a broken status quo is how every single thing has changed. And it's been a long while by now.

     
    cfsandmore, EzzieD, Ariel and 11 others like this.
  11. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    3,154
    https://www.ichpnet.org/
    Illinois Council of Health-System Pharmacists
    https://www.ichpnet.org/events/annu...emenway_Alice_-_Post-Acute_Sequelae_-_4up.pdf

    Post‐acute Sequelae of COVID‐19 (long COVID‐19): What Treatments are Being Used and Why
    Alice N. Hemenway, PharmD, MPH, BCIDP, BCPS
    Clinical Assistant Professor University of Illinois Chicago College of Pharmacy Rockford, IL
    September 23, 2021

    Slides include quite a bit of information about ME/CFS, including quoting the NICE guidelines.
     
    Sean, alktipping and Kalliope like this.
  12. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    4,686
    Location:
    Norway
    The Atlantic has printed an excerpt from Ed Yong's introduction to the coming book The Best American Science and Nature Writing 2021

    Ed Yong: What Even Counts as Science Writing Anymore?

    quotes:

    The best science writers learn that science is not a procession of facts and breakthroughs, but an erratic stumble toward gradually diminished uncertainty; that peer-reviewed publications are not gospel and even prestigious journals are polluted by nonsense; and that the scientific endeavor is plagued by all-too-human failings such as hubris.

    ...
    To the extent that the pandemic has been a science story, it’s also been a story about the limitations of what science has become. Perverse academic incentives that reward researchers primarily for publishing papers in high-impact journals have long pushed entire fields toward sloppy, irreproducible work; during the pandemic, scientists have flooded the literature with similarly half-baked and misleading research. Pundits have urged people to “listen to the science,” as if “the science” is a tome of facts and not an amorphous, dynamic entity, born from the collective minds of thousands of individual people who argue and disagree about data that can be interpreted in a range of ways. The long-standing disregard for chronic illnesses such as dysautonomia and myalgic encephalomyelitis meant that when thousands of COVID-19 “long-haulers” kept experiencing symptoms for months, science had almost nothing to offer them.
     
    Michelle, EzzieD, Campanula and 18 others like this.
  13. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    7,632
    Location:
    Canada
    One of the first studies on the impact of vaccination on Long Covid. Significantly reduces risk, but doesn't appear (at first glance) to make much of cases who got worse, which is especially problematic given that medicine is largely unable to do anything for those, and often hostile to the idea. Benefits clearly outweigh the risks but the neglect of individual who get worse remains a problem, especially given how casually dismissive people tend to be, in part probably to avoid emphasizing bad outcomes (or put another way: ignoring reality in favor of hopium).

    Thread with the main points:

     
    Ariel, Amw66, Sean and 4 others like this.
  14. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    7,632
    Location:
    Canada
    I hate that even though thousands of people saw this coming, the worst-case scenario still happened because no one who can do something about it listened, an ongoing problem caused by the initial failure to listen, it's too embarrassing to admit having missed the obviously predictable. Literally thousands, likely many tens of thousands, predicted this and tried to avoid the worst, but the people in charge of responding to this are incapable of doing so, because of myth and tradition. Sickening, literally.

    It's truly amazing seeing how predicting the future makes no difference to someone's credibility when they've been ostracized enough that no one listens to us. Even in medicine, being right almost makes no difference, it's all about displacing interests benefiting from stagnation, if that can't be achieved the truth will remain locked in a drawer somewhere. Of all the issues where one would think the truth would be absolute and, nope, not even a little bit, people can truly look at a bunch of trees and remain convinced it's not a forest, will even insist so no matter how many people suffer from it, even if it's literally their job to avoid suffering.

     
    Chezboo, EzzieD, mango and 14 others like this.
  15. Ariel

    Ariel Senior Member (Voting Rights)

    Messages:
    690
    I saw this today. I was troubled by the way these results are presented. It's fine to present the data that most people appeared to report benefit and some people became worse. But you can see from the phrasing how desperate they are to ignore the latter experiences. It's unscientific.
     
  16. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

    Messages:
    338
    Location:
    Adelaide, Australia
    Imagine having an illness that is so ignored and neglected that even after a massive outbreak of this illness, society and the medical profession claim that they'd "never seen anything like this before".

    What's worse is that they then invented an entirely new name for what you'd suffered from for decades.


    ETA: and to rub salt into the wounds, patients with this new illness then appropriated terms from your illness (eg, PEM, brain fog) to describe their symptoms with no attribution.

    I even saw a thread on reddit a few days ago from Long Haulers claiming to have discovered pacing using heart-rate monitoring.
     
    Last edited: Oct 4, 2021
    rainy, Michelle, Rosie and 23 others like this.
  17. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    4,686
    Location:
    Norway
    Article from a Danish new site about medicine and health on Long Covid. It interviews doctors who are working on rehabilitating Long Covid patients. They seem to describe PEM and have realised that classic rehabilitation doesn't work and that they have no real treatment to offer. But they still believe in careful exercise. ME is mentioned briefly as something patients have read about and believe they might have, but Long Covid is presented as a brand new condition.

    Ugeskriftet Senfølger efter COVID-19 trækker i langdrag: "Det er invaliderende, og patienterne er desperate"
    google translation: Late sequelae of COVID-19 drag on: "It's disabling and patients are desperate"

    Quotes:

    Patients seem a bit like an old cell phone with a tired battery. They only work for a very short time. In the severely affected patients with late sequelae after COVID-19, fatigue is the predominant symptom, and for some, the debilitating fatigue persists. Where in the beginning there was talk of months, recent research suggests that the late effects may last this year.

    ...
    “It’s pretty massive with a lot of them. Their jobs are threatened and they are terrified of their future. They can read and orient themselves, and they can see that it looks like ME. But what has really made a positive difference for many of our patients is that physiotherapists and occupational therapists have come on the scene with effective rehabilitation programs. It takes patience, but it can help many of our patients, ”

    ...
    “Just over a month ago, we published a study that is based on muscle biopsies on patients. It showed that half have changes and injuries in their muscles, which may explain the violent exhaustion in both the brain and muscles. We believe that there may be an autoimmune or autoinflammatory condition in which the immune system is going to damage the cellular energy metabolism in the mitochondria. It can also explain why we see more women with late effects, since it is primarily those who are affected by autoimmune diseases, "says Lars Østergaard.

    For him, it is a completely extraordinary situation to be in as a doctor and researcher. For it is extremely rare that a new disease occurs in medical science.
     
    Last edited: Oct 4, 2021
    Chezboo, Hutan, alktipping and 13 others like this.
  18. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,259
    It is so much easier to research a new disease. You don't have to bother with all the tedious business of reading the existing literature.
     
    Michelle, Chezboo, Hutan and 17 others like this.
  19. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    5,245
    It's not surprising, ME has been dismissed and described as 'mysterious' for decades. Just sweep it under the rug and look the other way.

    The shocked expressions of news reporters/journalists when interviewing LC patients and how they felt misunderstood and dismissed was interesting to watch.
     
    Hutan, Wits_End, alktipping and 10 others like this.
  20. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    7,632
    Location:
    Canada
    Please buy my common cold-healing crystals in bulk. They work 100% of the time, as long as you give them long enough to work. It could take years, but as long as you hold my healing crystals in your hand, eventually your common cold will be over. And that means they work 100% of the time. As long as you don't define work, or time, or %.

    It's pathetic how common it is in medicine to take credit for the passage of time. I have a feeling that a significant % of standard medical practices would end up being invalidated if they were actually tested rigorously, instead of giving them credit for the simple passage of time. I mean it's an old joke to speak of ancient absolute monarchs who took credit for the Sun rising up in the morning but this is basically the large-scale professional version of what was simply ritualized BS. It's just as absurd.

    I don't think there's ever been a greater mismatch between a problem and the skill and abilities of the people tasked with solving it. It's just so completely lacking in every regard.
     

Share This Page