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

https://longcovidmoonshot.com/

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.

Further, many of those conditions share enough common traits that it's plausible that insights into one will generate insights into others.

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

Considering COVID is still around and harming people... yes, yes it will, what are you even trying to say?

That everyone who's disabled due to undiagnosed fatigue and trying to find answers is just malingering?

If so, f you, that's a really bad faith argument.

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.

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

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.

I think HN has become biased against people who default to weird angry outbursts more than anything.

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

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...

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.

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..)

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.

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.

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.

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...

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

>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...

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...

Can you list what Pfizer et al lied about, what they said then, and what is publicly-official known to be the truth now?

And are you aware there were active demonization campaigns, exposed expressly in the Twitter Files investigative journalism and in US government hearings - that even highly credible Stanford, Harvard, etc, experts - were suppressed-censored for truth/facts they were sharing?

Serious questions.

Below aren't necessarily the best interviews to start off with to understand the situation, however they're most recent on my mind:

"Dr. Jay Bhattacharya on COVID Lies, Vaccine Truth, and the Breakdown of Science" https://www.youtube.com/watch?v=eO3mOUyk5FE

"Council of the Canceled" https://www.youtube.com/watch?v=lhUZ-xu_M4o

And before you comment, you'll likely have heard and recognize Dr. Jay Bhattacharya as a demonized name, considered a "quack" or at least "very sketch" - so instead of believing those utterings, I highly hope you'll listen intently without passing judgement before critically thinking through to hear what they're saying, rather than perhaps reactively dismissing them, avoiding them, and therefore not getting a chance to hear a full enough of their perspective that makes sense. Jay on Dad Saves America podcast, where they touch on this a bit: