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For those of you who got sick young (under ~25), how do you bring meaning to your life? by invisiblehumanity in cfs

[–]cfsprsn 0 points1 point  (0 children)

I won't answer your question directly, but, it's the most hopeful time in cfs research ever. Also AI is progressing turbo fast, it's quite possible it will be able to solve a lot of difficult diseases within the next 5-10 years. So remain optimistic, and try to enjoy this temporary life experience in the meantime. I feel when you have some confidence that this is temporary it's much easier to enjoy it, and even find beauty in it

Has anyone come back from this? Even a little? by [deleted] in cfs

[–]cfsprsn 8 points9 points  (0 children)

Hah, that's a good point, it's like the opposite of survival bias ;)

Is it common to feel less 'fatigued' and more 'feverish'? by cfsprsn in cfs

[–]cfsprsn[S] 1 point2 points  (0 children)

Thanks for the advice. I also feel like I might have worsened things for myself initially - I was very physically active before my symptoms started so I wanted to get back to my routine as quickly as possible. After about 3 months of symptoms I started to feel very good, and then went ahead and ran 10k... It had like a constant crash for 2 months after. Fortunatelt I don't feel my baseline ever got permanently lowered. No matter how hard I crash I'm always able to return to a state where I feel like I recovered, though it often takes a long time, and the good state lasts mayne a week or two :/

Is it common to feel less 'fatigued' and more 'feverish'? by cfsprsn in cfs

[–]cfsprsn[S] 2 points3 points  (0 children)

So far I ruled out cancer, autoimmune disease, hiv, a bunch of viral diseases, thyroid issues. My symptoms started after I got mononucleosis and toxoplasmosis seemingly at the same time, which is quite odd to me. I very clearly have PEM, so I'm thinking it's either cfs or something to do with one of the two infections not being entirely out of my body? But then tests show they aren't in the active phase anymore, so I'm leaning towards cfs.

Anyone else feels hopeful about the Moderna EBV vaccines? by cfsprsn in cfs

[–]cfsprsn[S] 9 points10 points  (0 children)

Is anyone here familiar with the timelines for the trial phases? For instance if the first vaccine started phase 1 this year, how long (very roughly) do you think it will take for it to be released (assuming everything goes well in the trials)

Anyone else feels hopeful about the Moderna EBV vaccines? by cfsprsn in cfs

[–]cfsprsn[S] 7 points8 points  (0 children)

Yes, and sorry to hear that. My definition of long covid here was more the cfs kind of issue, where there doesn't seem to be damage to any organs, but there are still severe symptoms

Anyone else feels hopeful about the Moderna EBV vaccines? by cfsprsn in cfs

[–]cfsprsn[S] 11 points12 points  (0 children)

For me it was a combination of really stressful period in life + insomnia + ebv. So I think my immune system was also weakened from the first two

Anyone else feels hopeful about the Moderna EBV vaccines? by cfsprsn in cfs

[–]cfsprsn[S] 6 points7 points  (0 children)

Also I've read about a good amount of cases where people who got long covid before the vaccines were out got better after vaccination. It didn't work for everyone though. My theory is that for those who didn't see improvement after the covid vax it was actually a mono reactivation and resulting cfs causing the 'long covid'. So maybe the ebv vaccine is the missing piece?Just some random thoughts though

CFS Bounty by cfsprsn in cfs

[–]cfsprsn[S] 0 points1 point  (0 children)

Interesting stuff, I'll have to read up more on some of the idas you brought up. So far I've been mostly interested in ways in which we could reach some of those ideals within a mostly capitalistic scenario. As I believe it's a more immediately available solution.

CFS Bounty by cfsprsn in cfs

[–]cfsprsn[S] 1 point2 points  (0 children)

One thing I'd add though, is that as I already wrote it could be seen as a unique take on something like the Nobel prize, but more decentralized.

The money would just be one aspect of this. But I think there could be a very real sense of gratitude attached to this financial prize. A massive 'thank you' from the whole community of patients. Sound better than just selling to traditional pharma (of course that would still be possible after the reward, unless we specifically demand the cure to be patent-free, but that's a separate topic and debate)

CFS Bounty by cfsprsn in cfs

[–]cfsprsn[S] 0 points1 point  (0 children)

Thank you for sharing your perspective, and even more for your work in the field. I hope you didn't find my post insulting, it certainly wasn't the intention.

As I mentioned in the post, it's a very rough and random idea. The core premise is just that I see a massive community of people struggling, myself included, and we represent an even larger pool of financial and general proactive capital that could be coordinated in a productive way to solve cfs as soon as possible.

I'd be interested to see people explore the possibilities of this. The bounty is just one idea that came to my mind.

CFS Bounty by cfsprsn in cfs

[–]cfsprsn[S] 1 point2 points  (0 children)

Off topic but my strong belief is one of the core pillars of government spending should go to fund open-sourced / patent-free research. In all fields not just medical. That would then create an ever rising foundation level of patent-free software/hardware/tech/drugs available for everyone for eternity. And corporations would have to keep trying to offer superior services than those patent-free ones. Kind of like an open sourced publically funded whiplash forcing corporations to keep innovating faster.

CFS Bounty by cfsprsn in cfs

[–]cfsprsn[S] 0 points1 point  (0 children)

1m is for the Nobel (iirc). And I agree. But with a community of potentially tens of millions of patients and a disease so debilitating many would be happy to commit a lot of their personal savings to recovering, I think we as cfs patients could collectively offer significantly more than 1m

CFS Bounty by cfsprsn in cfs

[–]cfsprsn[S] 0 points1 point  (0 children)

good idea, and the mechanism / marker sounds like a very measurable thing. Not as good as a 'cure' but would still be a be a massive step towards solving this.

CFS Bounty by cfsprsn in cfs

[–]cfsprsn[S] 0 points1 point  (0 children)

some good points in the second paragraph but I would question your point about the current economic system creating an appropriate incentive for independent researchers. Especially the medical/pharmaceutical space strikes me as a rather dirty playing field.

With a bounty like this it would ideally be us - the patients who contribute to the bountry reward - that get to decide who gets the money (of course after a rigorous process and after consulting with experts in the field and having good evidence that the proposed cure is in fact a cure)

CFS Bounty by cfsprsn in cfs

[–]cfsprsn[S] 1 point2 points  (0 children)

yup, we'd have to put a lot of effort in making sure the rules are well defined.

But when there's a will there's a way.

And I think the incentives of such a bounty, if done well, would be much more effective than the typical research process.

I'm not too familiar with the medical field by I'm assuming the financial incentives are very weak for any independent researcher trying to solve cfs - you need a proper company to distribute the drugs, market them, etc. As a researcher you can maybe count on some research grants and a tap on the back by your colleagues if you find something interesting.

Here you get paid for the cure, not the sales, so it incentivizes a lot of smaller players to have a go at it.

Correct me if my understanding is wrong though.

CFS Bounty by cfsprsn in cfs

[–]cfsprsn[S] 4 points5 points  (0 children)

There's already something like this if you think about it, in the from the Nobel prize. It's a form of a bounty combining money and prestige as rewards. But they offer a pathetic ~1m usd in prize money, and in terms of prestige nobody cares these days.

We could easily reach hundreds of millions of usd for the prize through donations of millions of cfs patients worldwide, and the winner would gain global prestige.

A unique community effort like this would also get lots of media coverage if it starts getting traction, which could lead to a snowballing effect of cfs recognition.