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This is really interesting. What could be the meaning of such poor performance in PVFS? That it’s a near useless diagnosis that jumbles up too many different things together?

I feel like the discourse, the research, and pretty much everything and anything around Long COVID and ME focuses on the “symptoms” and not the functional disability. I am not disabled by symptoms alone; I am disabled by a profound functional limitation driven by post-exertional malaise (PEM)...

The “conclusions” Full Article: https://theconversation.com/the-peer-review-system-no-longer-works-to-guarantee-academic-rigour-a-different-approach-is-needed-244092

I just completed the follow up and was a little disappointed. Again, 0 mentions of PEM, (although for symptoms that “come and go” they did have “overexertion” as a possible cause you could tick) and a big focus on psychiatry. The survey didn’t feel very disability informed, as someone with...

For a properly done trial, what could they have used? Would it be ethical to use something that risks causing a skin ulcer as placebo?

The second comment especially sounds exactly like a manifestation of PEM!

That does sound like an interesting proposal. Sorry I tend to sometimes skim these more speculative threads but rarely read them more thoroughly as to be honest I have little clue what I’m talking about. In my opinion, I think it’s more likely the sore throat arises from some kind of weird...

Yeah. It was never their official account, but some of their loudest voices who organised the attacks. Anyhow, I’m pretty sure the death threats some of their supporters made would get them swiftly kicked off bluesky, which is a plus to twitter.

I’m not sure this is who they are referring too. But the Long COVID Action Project people, who are big on twitter, (Believe Long COVID is a persistent HIV type infection, and that ME has nothing to do with it, some of them believe ME is made up and “stealing the thunder” fron Long COVID)...

Maybe if the medical system actually worked and gave a damn that wouldn’t have happened like this. What do they expect people with real diseases neglected by doctots to do, pretend they are healthy? Or do they have the naïvité to believe that medicine would always immediately discover a new...

Yuppie Flu, Shit Life Syndrome, Tik tok disease. It’s not us who are jumping on “disease trends” because we see them, it’s them who jump on whatever the current ableist stereotyping trend is.

Did Solve ME fund this? I wouldn’t be suprised after the “stem cell” thingy they funded.

I was thinking about how people who have benefited from drugs tend to be far more likely to share the results. Which made me think I should share my negative results to this thread. I tried Pyridostigmine started from a very low dose. Within a couple days, I started having strong MCASesque...

How do these people get into powerful positions in patient charties?

Honestly I’ve found paracetamol to be far better for pain. CBD mostly helps relax me, but doesn’t change much else, it’s like a strong camomile tea.

[I was told this survey is quite long, like over an hour, but can be paused at any time. It’s also open to people outside of austria] https://s2survey.net/pais/index.php?l=eng&q=base&htR=AwA%3D The Following are quotes: What do we want to achieve with this study? This study, sponsored by the...

It feels like a sort of ruse to make a rehabilitation and then claim it should make people recover so that if they don’t recover it’s easy to claim it’s the patients fault who didn’t try hard enough etc and the government had done it’s duty by offering rehabilitation.

What’s scary is if more severe people truly believe it works, they will risk lots of PEM and permanent worsening just to try the therapy.

If he really becomes in charge of the NIH I will be devastated.

I found a quote from an article he wrote last year that touches on Long COVID. He minimises it’s impact and says it’s mainly “post ICU syndrome” https://www.tabletmag.com/sections/news/articles/the-covid-wars