Comment by dimal

Comment by dimal 10 months ago

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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.

loceng 10 months ago

https://covid19criticalcare.com/protocol/i-recover-long-covi...

They also have a "Find a provider" page under "RESOURCES" section.

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  • r721 10 months ago

    >covid19criticalcare.com

    >The Front Line COVID-19 Critical Care Alliance (FLCCC) is a group of physicians and former journalists, formed in April 2020, that has advocated for various unapproved, dubious, and ineffective treatments for COVID-19 (e.g. hydroxychloroquine, ivermectin, and other miscellaneous combinations of drugs and vitamins).

    https://en.wikipedia.org/wiki/Front_Line_COVID-19_Critical_C...

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    • loceng 10 months ago

      My reply: https://news.ycombinator.com/item?id=41601159

      Edit to add: A downvote is about as much effort as I imagine someone will put in who blindly believes, without deeply investigating or critically thinking for themselves, ad hominem about others who are the dissidents of massive status quo systems that heavily control and influence, control the narratives presented, on most of the major mainstream media channels, e.g. big pharma which accounts for 75% of ad spend on the major news networks in the US.

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  • ck2 10 months ago

    Be aware that FLCCC, Dr. Pierre Kory, Dr. Bruce Patterson are all considered quacks or at least very sketchy by long-covid advocacy groups

    There are a lot of desperately ill people with long-covid and like everything else in this world there are plenty who are more than willing to take advantage of that desperation

    https://www.motherjones.com/politics/2022/01/desperate-patie...

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mcdeltat 10 months 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.

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  • dimal 10 months 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.

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    • ntlk 10 months ago

      In the UK the NHS recommends “pacing” for ME/CFS, which is a very slow, gradual increase in activity without triggering over-exertion - same as what you found effective. I believe there are some materials and support groups available to people who qualify for them, it’s definitely one of the recognised treatments. [1]

      Changing a lifestyle in support of recovery is of course much harder than taking medication. Can people’s jobs adapt? Can the benefits / social security systems? Do people have support networks which they can rely on? So I agree that maintaining health is super complex, and there are additional social/economic challenges here.

      1: https://www.cambscommunityservices.nhs.uk/Bedfordshire/servi...

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    • binary132 10 months ago

      A loved one in my family was sick for years with a very painful chronic illness and all of the tests were completely useless except to rule out a myriad of possible causes. Thankfully she did happen upon a very effective treatment (Zoloft) and her quality of life is immensely improved now, with basically zero pain, and she’s able to function again. It was devastating to her health and she had nothing to go on whatsoever.

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