dimal 3 hours ago

I’ve had chronic fatigue for long stretches my entire life, sometimes for years at a stretch. I think I would qualify for a CFS diagnosis, but no doctors treat it, so no one ever thought to diagnose me. They’d just say my tests are fine and shrug.

The fact of the matter is that the medical industry has no clue what to do about chronic health conditions like ME/CFS or Long COVID. They have no game plan at all. Everything I ever did to improve my symptoms and get my energy back was stuff I either did myself or just dumb luck that my body recovered.

> Instead of funding novel medicines like Ampligen, the NIH has directed most of its RECOVER resources to observational studies designed to learn more about the condition, not treat it.

So, this seems like a good decision. Observational studies aren’t giving up. They are the basis of the whole “evidence based medicine” pyramid of evidence.

  • mcdeltat 2 hours ago

    It's come to fascinate me how modern medicine is simultaneously miracle-performing and devastatingly primitive. We can repair tiny structures, regrow organs, eradicate diseases from existence. And yet, you could fall unwell with something like ME/CFS which ruins your life, and medicine has literally nothing to give. A total blind spot.

    Perhaps a reality check that the human body is immensely complex, and medicine is not magic. We've just been doing our best all along, and we need to continue doing so with support for medicine and science.

    • dimal 8 minutes ago

      I agree and disagree. Maintaining the health of a human body in a complex industrialized society is the most complex problem in the known universe. The amount of variables involved is astounding. But we’ve settled on a system that is more of a bureaucracy than a scientific endeavor and we wonder why it fails. We haven’t been doing our best. We could do better.

      We should support science, but give up on medicine for health maintenance and chronic illness. Medicine as a practice is centered on curing acute illnesses and fixing acute injuries. I went to the emergency room recently for a really bad cut on my hand. The experience was fantastic. That’s the type of problem they know how to solve. It’s a completely different type of problem than a chronic illness, which depends on behaviors, environment, diet, exercise, etc.

      And not just “you should exercise“. To recover my energy, I had to find just the right amount of the right type of exercise that would increase my energy without overexerting myself and making my symptoms worse. There’s no way that industrialized bureaucratic endeavor like modern medicine could help with that, unless of course I was rich. The medical industry can’t change. I’ve given up on it. We need a new science.

imperialdrive 5 hours ago

This has very little to meaningfully do with anything, but I know someone that had long covid, and it ruined their life and career etc. because of barely being able to function more than a few "good" hours a day. They got covid again about two year later, was moderately sick for a week, and then completely healed, 100% back to normal. Absolutely blew my mind.

  • bsder 4 hours ago

    A lot of the hypotheses about Long <insert virus here> are about how well your body cleared the remnants. You can have a persistent reservoir of something for quite a long time until your body finally decides to clear it out.

    One of the canonical examples of this are warts from HPV. There are documented cases of people having persistent infections until they "injured" a wart somehow, their body finally took notice, and then their body proceeded to completely clear all of them.

    Modern medicine really does not deal with active viruses or their aftermath very well.

    • Panzer04 44 minutes ago

      That's really interesting. I wonder if the immune system is modal - I know there are tons of systems in place that kick it into gear for response to an infection, so I guess its reasonable to assume that the body prefers to keep it as dormant as possible the rest of the time to minimise auotimmune disease risks and the like.

      If these sorts of disorders creep in underneath it, and persist at a sufficiently low level not to trigger it, I suppose these things can hang around. I wonder why the immune system can't clear it out otherwise though (since presumable plenty of other immune systems have to always be active, to prevent infections from cuts and the like from being imminently fatal..)

    • nextaccountic an hour ago

      Perhaps this suggest that a treatment for long covid might be a new exposure to covid itself - or maybe a safer drug that mimics covid, like a vaccine or something analogous, that gives the benefit of "restarting" the immune response, but without the complications of real covid.

    • pixl97 an hour ago

      I think a lot of the problem here is the stunning complexity of the immune systems in living systems. A huge part of our immune system isn't our own, it's other viruses and bacteria that live in symbiosis with us. The war of the viruses and bacteria was going on for billions of years before cells decided to clump together and make anything complicated.

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davidmurphy 7 hours ago

outrageous.

gov't should be massively funding at an absolutely epic scale

  • LorenPechtel 5 hours ago

    This is talking about private funding. The problem is that we don't have enough understanding to know where to start and private funding works very poorly in such situations.

    And I'm sure public funding is tied up in politics. Covid is too politicized.

  • ck2 6 hours ago

    Senator Bernie Sanders has a plan with several co-sponsors to try to make a 10-year "long-covid moonshot" but given how politics work in this country it will never happen unless watered down to something useless and meaningless.

    https://longcovidmoonshot.com/

    • wkat4242 6 hours ago

      Well unless big pharma can cash out on it like crazy. Then it'll be a huge success.

  • nradov 7 hours ago

    Why? Is this a higher research priority than other medical conditions such as cancer or HIV? Are there plausible reasons to think that epic scale funding would significantly accelerate results?

    • kbelder 6 hours ago

      I agree. We should research it at a level appropriate for the damage long covid is causing. Which is probably a lot, because it seems like a real thing that is impacting lots of people; but it's far from the most important medical problem we have.

      • wkat4242 5 hours ago

        This same phenomenon isn't unique to Covid either. Other illnesses can lead to similar debilitations. Research into this will give great insight into processes we hardly understand.

        Of course it's not the #1 healthcare priority now but who says we should only solve problem #1 and leave all the others hanging?

        I know a health worker that worked hard to save lives during the first phases of Covid and her life is now ruined due to this. I doubt she can be 'cured' but at least this may be prevented for others.

    • dchftcs an hour ago

      I'd argue chronic conditions that are debilitating should have at least the same priority as cancer, assuming their prevalence in the general population is similar. Long covid is more like to affect productive age people compared to cancer, so a government would be wise to prioritize it.

    • stodor89 6 hours ago

      I think he's being sarcastic.

      • Diti 2 hours ago

        Per Poe’s law, which most of the Hacker News community is familiar with, assume sarcasm doesn’t exist unless the commenter explicitly tells it’s sarcasm.

  • tiahura 2 hours ago

    That seems really foolish. A certain percentage of the population will always have the latest, I have no energy and can’t work disease: long COVID, chronic fatigue syndrome, Lyme disease, fibromyalgia, gulf war syndrome, etc. Just wait a few years and it will be a whole new “epidemic”.

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mjfl 6 hours ago

[flagged]

  • LorenPechtel 5 hours ago

    So you stick to the party line despite vast evidence to the contrary?

    My SIL has never been the same (her words) since she got it--note that she does *not* live in the US where it's a political issue.

    The fundamental problem is that "Long Covid" is one of these "diagnoses" that are just a description of a widely varying set of symptoms and do not identify the actual problem. For a similar example consider AIDS. There we could at least identify the vector but until we discovered HIV we weren't very effective at dealing with it. This time around we know the underlying pathogen but not the mechanism of action.

    SARS had many of the same lasting effects and was never thought to be hypochondria.

    • ck425 4 hours ago

      Wow, is long covid legit a "political issue" in the US??

  • AnthonBerg 5 hours ago

    With measurement of known biomarkers corresponding to well-established symptoms from decently well understood physiological damage which stems from the ability of the virus to do this and that. For instance.

    How do you get out of bed in the morning? Do you fall out our do you have someone to assist you?

    • mjfl 3 hours ago

      what biomarkers???

      The outright rage you display combined with your inability to articulate any actual concrete details suggests to me this is a deeply emotional, psychological issue, and perhaps not a rational one.

  • randerson 5 hours ago

    When you have millions of formerly healthy, active people reporting the same thing, unable to get out of bed for more than a few hours a day, unable to do complicated tasks or do the things they enjoyed, something is clearly going on.

    I had Chronic Fatigue Syndrome after getting Epstein-Barr virus as a teen. I was told by many doctors that it was not a real illness and it was all in my head. I tried to make myself believe that, and eventually convinced myself that I was indeed crazy. It took about a decade to recover enough that I can live life, but I still get exhausted easily. And during that time CFS became more widely accepted as a real illness.

    Now doctors are saying there is a lot of similarity between CFS and Long COVID

  • proto-n 5 hours ago

    The same way any other illness is, I guess

mjfl 7 hours ago

[flagged]

  • ck2 6 hours ago

    It is very real and documented in many many many studies after four years now.

    AI analysis of all those studies has come up with at least four different kinds.

    Plenty of people like you who were deniers who end up getting it for years now, including many doctors themselves.

    https://covid19.nih.gov/news-and-stories/researchers-identif...

    • rossant 6 hours ago

      Classic reaction of incompetent and arrogant doctors: "I don't know what that is so it's fake/in your head/your fault/etc."