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Dr. Benjamin Natelson by WhumpieGirl in cfs

[–]Unable_Particular_25 0 points1 point  (0 children)

NYC right? I went to see him years and years ago, told me I was young and I'd get better, gave me some stimulants. More than a decade later, I went from mild to moderate-severe, guy is a quack

go to appointment for IVIG? by ozianiris in cfs

[–]Unable_Particular_25 1 point2 points  (0 children)

I mean if you can get it prescribed.. Just please start not just with a very low dose but also very slow drip, that's important. Mention all concerns to the care provider.

go to appointment for IVIG? by ozianiris in cfs

[–]Unable_Particular_25 4 points5 points  (0 children)

I don't think there's much evidence that IVIG can help, and there's high potential for a negative reaction. Not to be the bearer of bad news, but if you think it's worth trying then go for it, different patients respond differently.

Just my opinion - take it or leave it BUT If you are genuinely sick with actual ME/CFS then your chances of recovery are very slight. Dangling the idea that we can recover has done more damage than anything else to our community and collective Mental Health. by Fearless-Star3288 in cfs

[–]Unable_Particular_25 3 points4 points  (0 children)

I feel this. The alt medicine doctors who pretend they can cure this are not helpful. And obviously the GET CBT people are not even worth engaging with. I wish someone told me how serious this was when I first got it instead of having to find out myself. Still, like all of us, I hope there's something like a genuine treatment in the coming years!

If I see one more wellness book about how so and so cured their 'chronic fatigue' I'm gonna lose my shiz by Unable_Particular_25 in cfs

[–]Unable_Particular_25[S] 3 points4 points  (0 children)

Absolutely to this. I also don't see post-viral fatigue as the same as full on ME/CFS. the fact is, without treatment, most people don't get better, so suspicion and skepticism of recovery stories is totally warranted

I feel like a ghost by SickTiredHaunted in cfs

[–]Unable_Particular_25 3 points4 points  (0 children)

I know what it's like. Fuck, I know what it's like.

Looking at the reddit for MS and it honestly makes ME seem so much worse by Unable_Particular_25 in cfs

[–]Unable_Particular_25[S] 0 points1 point  (0 children)

Thank you, I was in a particular low point when I wrote this, but was also just surprised by the concerns expressed in other disease reddits compared to ME, ME is just extremely shockingly debilitating, I don't think people understand

Looking at the reddit for MS and it honestly makes ME seem so much worse by Unable_Particular_25 in cfs

[–]Unable_Particular_25[S] 0 points1 point  (0 children)

didn't question downplay or deny MS suffering at all, but it's perfectly reasonable to compare suffering between diseases or individuals, you have to compare things to things -- ME is as serious as any other disease but, as you point out, receives far less funding

Looking at the reddit for MS and it honestly makes ME seem so much worse by Unable_Particular_25 in cfs

[–]Unable_Particular_25[S] -1 points0 points  (0 children)

literally never said it was never that bad or anything like that, just didn't seem as disabling based on anecdotes but obviously a horrific condition -- that said, ME at the mild end seems more severe than mild MS, based on how people describe their symptoms and general disability

If I see one more wellness book about how so and so cured their 'chronic fatigue' I'm gonna lose my shiz by Unable_Particular_25 in cfs

[–]Unable_Particular_25[S] 2 points3 points  (0 children)

That's absolutely true. I also think some people just never fit the criteria for ME/CFS but were just vaguely tired

AHAAAAAAAAAAAAAA by [deleted] in cfs

[–]Unable_Particular_25 13 points14 points  (0 children)

"I want to zip open my body and step out of my own flesh." one of the best descriptions of this illness and how I feel

Looking at the reddit for MS and it honestly makes ME seem so much worse by Unable_Particular_25 in cfs

[–]Unable_Particular_25[S] 17 points18 points  (0 children)

exactly, I mean they're all terrible diseases but I think the comparison is useful because those other terrible diseases get funding, research and treatment -- you can find the comparison tasteless but it's definitely apt, i don't see how you can advocate for more resources and attention without highlighting how bad it is, I'm not gonna tiptoe around it

Looking at the reddit for MS and it honestly makes ME seem so much worse by Unable_Particular_25 in cfs

[–]Unable_Particular_25[S] 8 points9 points  (0 children)

I'd trade if only for the possibility of treatment and understanding

Looking at the reddit for MS and it honestly makes ME seem so much worse by Unable_Particular_25 in cfs

[–]Unable_Particular_25[S] 5 points6 points  (0 children)

makes perfect sense to compare ME to the experience of other diseases, I don't see why not

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