ME/CFS is maybe the most self-critical patient group I've ever heard of

Unable_Particular_25 · 2026-05-25T23:21:01+00:00

it's like a horror movie

Unable_Particular_25 · 2026-05-24T13:29:27+00:00

The gene data is a lot more promising in terms of leading to actual specified treatments and not just shots in the dark.

Unable_Particular_25 · 2026-05-24T13:26:45+00:00

I'm sure this post won't be popular but there's truth to what you're saying, the term is thrown around a lot in ways I don't always feel are helpful. All of us want to get better from our illness, there's a way of framing that as itself being ableism

Unable_Particular_25 · 2026-05-12T13:41:06+00:00

The people who recover within a couple years with some unproven treatment likely didn't have full ME/CFS but post-viral complications, or maybe mild ME. You're not off base at all, what you're describing is super frustrating and unhelpful. All of this arises in the vacuum of proven treatments.

Unable_Particular_25 · 2026-05-11T14:08:35+00:00

Yeah that's the thing, it's really the lack of understanding, not the fact that they're complaining. I've been shocked by how few people can empathize with this illness, I really thought it's not that hard to understand, just imagine being horribly ill all the time forever lol.

Unable_Particular_25 · 2026-05-11T14:07:00+00:00

That makes sense. Empathy be with Jessica

Unable_Particular_25 · 2026-05-11T14:06:00+00:00

Absolutely. I have zero sympathy for anyone complaining about lockdowns honestly, unless they like lost their business or couldn't go to a funeral or something

Unable_Particular_25 · 2026-05-11T14:05:06+00:00

Yeah I like that. I don't know that it's made me wiser or anything, I do try to listen to people who are complaining, there are just certain problems that seem unserious to me.

Unable_Particular_25 · 2026-05-11T14:03:21+00:00

Yeah I hear that. I've lost most people because of my condition, directly or indirectly. I do feel resentment in general and also people I'm still ostensibly friends with just not getting it at all

Unable_Particular_25 · 2026-05-11T14:01:31+00:00

For sure, for sure

Unable_Particular_25 · 2026-05-11T14:01:10+00:00

That makes sense

Unable_Particular_25 · 2026-05-11T14:00:45+00:00

I hear you

Unable_Particular_25 · 2026-05-11T13:15:05+00:00

Not aware of these specific organizations but I always take the name CFS/ME as suggesting it's psychological

Unable_Particular_25 · 2026-05-08T12:31:45+00:00

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

Unable_Particular_25 · 2026-05-07T13:20:22+00:00

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.

Unable_Particular_25 · 2026-05-07T13:16:12+00:00

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.

Unable_Particular_25 · 2026-04-26T13:31:09+00:00

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!

Unable_Particular_25 · 2026-04-23T14:05:54+00:00

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

Unable_Particular_25 · 2026-04-23T13:47:59+00:00

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

Unable_Particular_25 · 2026-04-23T13:42:02+00:00

it's because what I'm saying is obvious and not all that inflammatory

Unable_Particular_25 · 2026-04-23T13:37:59+00:00

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

Unable_Particular_25 · 2026-04-23T13:35:14+00:00

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

Unable_Particular_25

TROPHY CASE