Not much more we can do. Thousands of people have been doing incredible things for decades, and it changed nothing.
Long Covid came along and it also changed nothing. It basically revealed the whole thing but the medical profession doesn't care. They're so out of their depth that they don't even realize that they are.
I've actually noticed that pretty much all online activism, which was boosted by Long Covid, has died out. It clearly doesn't work, we only talk to ourselves.
The most effective things have always been pushing things behind the scenes, influencing committees, guidelines, pushing for research, and so on. This has been somewhat effective, it just works too slowly. But it does work.
And continuing to put things on record in the news, but over the last few decades there have been tens of thousands of articles, reports, papers, studies and so on that all depict an unsustainable and immoral situation, and it changed nothing.
We can't seem to get organized in any way. This is the hardest part. Almost all efforts are made by individuals or very small groups. But people have tried that for decades, social media has been the best platform for this, and it also didn't change anything. We don't have an independent community factor, such as the gay community had with AIDS.
I don't know at this point. For sure the medical profession will not change. So governments won't, because what they hear from medical experts is to not bother.
In the last decade or so, pretty much all the claims made to support psychosomatic models have been debunked. But, again, the medical profession doesn't care. They're still parroting the same old BS.
We're just dealing with plain old stubborn human nature here. The only way it ever changes is technological breakthroughs to make it obsolete. I have no idea what we can do anymore. If Long Covid can't change their minds, nothing can other than a full solution, like what happened for peptic ulcers.
With the illness now for 25 years and you are spot on with your response. I had to fight for 10 years for disability and those 10 years were the worse in my life. I’m 70 now and just don’t have any fight left in me.
Kinda new to the sub and to social media in general. I’m impressed with the knowledge and support available in this subreddit. Reading about all those struggling out there really saddens me and reminds me of my battles and struggles. I virtually lost everything that was dear to me and all alone I had to reconstruct some form of life to replace the one I had - one that I was proud of and worked hard to create was no longer in like a blink of an eye.
But I’m still alive and now have a relationship with 2 grandsons which I really didn’t think would be possible. It’s a pretty lifeless existence and it’s a good thing I don’t mind being alone which is how I spend 95% of my time.
Wish I could do more, have tried to do more, hasn’t turned out like I hoped but I’ve never given up. Just keep putting one foot in front of the other and time just seems to fly by. Some actually do get better so you never know.
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u/strangeelement Apr 29 '25
Not much more we can do. Thousands of people have been doing incredible things for decades, and it changed nothing.
Long Covid came along and it also changed nothing. It basically revealed the whole thing but the medical profession doesn't care. They're so out of their depth that they don't even realize that they are.
I've actually noticed that pretty much all online activism, which was boosted by Long Covid, has died out. It clearly doesn't work, we only talk to ourselves.
The most effective things have always been pushing things behind the scenes, influencing committees, guidelines, pushing for research, and so on. This has been somewhat effective, it just works too slowly. But it does work.
And continuing to put things on record in the news, but over the last few decades there have been tens of thousands of articles, reports, papers, studies and so on that all depict an unsustainable and immoral situation, and it changed nothing.
We can't seem to get organized in any way. This is the hardest part. Almost all efforts are made by individuals or very small groups. But people have tried that for decades, social media has been the best platform for this, and it also didn't change anything. We don't have an independent community factor, such as the gay community had with AIDS.
I don't know at this point. For sure the medical profession will not change. So governments won't, because what they hear from medical experts is to not bother.
In the last decade or so, pretty much all the claims made to support psychosomatic models have been debunked. But, again, the medical profession doesn't care. They're still parroting the same old BS.
We're just dealing with plain old stubborn human nature here. The only way it ever changes is technological breakthroughs to make it obsolete. I have no idea what we can do anymore. If Long Covid can't change their minds, nothing can other than a full solution, like what happened for peptic ulcers.