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Very much relate

I completed the questionnaire but was a bit confused about what its trying to measure. Why ask how many crashes I have how is that relevant to figuring out if i get pem or not?

$$$

To put them together. What never fails to trigger me is “healing journey” or “recovery journey”

This is so annoying. Everyone treats it like a phase. People don’t get I’m profoundly disabled by something with poor prognosis and have followed a pretty progressive course up till now.

I have online. Especially by people who’ve recovered or who are early on in their illness. Never heard it in real life though.

I also suspect ME/CFS age peaks and stuff might start looking different now that covid is here to stay.

Here are the nine questions. Some of them are decent, some of them a bit disappointing. Interesting to see Oonagh Cousins on the author list. She’s that Oxford student rower who went on the BBC and bashed the LP.

Lets just say the authors could use a taste of their own medicine “interpretation bias modification”.

I think CAR-T for CD38 is in the works aswell?

Yeah honestly I hate to say this but he’s a researcher he doesn’t need to be on Xitter really. Might help if this was resolved behind closed doors and a break from Xitter was taken.

Welp hopefully this doesn’t spiral. Rob sounds like he needs a holiday.

I imagine there was a lot of correspondence behind the scene between the ÖG and Rob that makes this more clear. Without that context, its really hard to know whose in the right or wrong. They also both probably have access to the future plans which aren’t out in public.

Atleast he’s made it particularly easy for us to point out he doesn’t care about us at all. The more weasel worded british merchants of doubt make sure to polish their public image to gaslight people into thinking they’re fighting for us. He’s portraying himself as fighting against us.

Do you think there is this “one thing” called depression. And things misdiagnosed as depression are muddling it up. Or do you think Depression is an umbrella term that can refer to many things. I also have some doubts about the clinical construct. In no way do I doubt the validity and...

The Austrian Association said this English LLM Translation: Here’s the xcancel link if anyone wants to dig further into the thread without touching “X”. https://xcancel.com/RobWust/status/1992265878856220909

I’m actually quite suprised the twin heritability studies are done on twins who grew up together. I always assumed it was done on twins seperated at birth to minimise environmental confounders. Though i guess that would be a logistical nightmare, adoption and parents dying is less common than...

I liked your idea but maybe applied to the same activity and same person. Like say we’re doing the 6 minute walking test. If someone scores better after GET but theyre heart’s also beating much faster than the original try — have they just learnt to push themselves more?

My experience is that for similar exertion your severity changes how fast your heart beats. Ie. watching a video on a computer at rest with sound would have been 50 bpm for me when mild and would be around 100bpm now that I’m severe. There may still be a correlation in there though. But I would...

I don’t understand how you think this would work? Mild people have more extra beats? Less extra beats? I think mine would have looked pretty similar when I was mlld and now. I guess you could use visible band data to test this theory?