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The major costs and effort this protocol take make me wonder if it might create a sunk cost fallacy similar to the LP.

Good detective work. I wonder what’s best way to use this information.

This improvement is amazing to hear. Whitney who has gone so many years non-verbal definitely deserved this. I’m so glad it happened. I can’t help but feel a little alone as a non-verbal person now though. Whitney was the only person with ME/CFS I have interacted with that also was non-verbal...

I think it’s the only gene we’re decently confident was a decode ME hit. (The other ones we have a hit that could be one of multiple genes).

Same. I’m uncomfortable with the fact her team often overstates or straight up comes to the opposite conclusion the data show in her papers. That’s not the sort of methodological rigour I am hoping for in ME/CFS research. ironically she seems better at advocacy than research.

Think maybe as an example looking through disability data pre-post pandemic and trying to find a story/estimate how much the burden of long covid is undercounted. In general data journalism just kind of means using a lot of graphs/basing a story on data instead of using data to illustrate a...

Two negatives makes a positive? (Maybe Nath is a maths guy)

Nath: '“And lastly, we just got approval from the FDA to do a study with Checkpoint Inhibitors in Long COVID patients. The pilot study is only 10 individuals, a safety study, but nonetheless, I'm very excited about that possibility because if that works, we can actually reverse the entire...

I was also under the impression that was what he was going to test. Perhaps both trials are in the works?

Another study taking the correlation with depression scores uncritically at face value unfortunately.

Don’t we already have an OMF + a MEA LDN study in the works. Doses are interesting I think slightly higher than usually prescribed.

I had to look up what “excuse my french” meant was very confused :rofl:

Yeah my nights go something like this. Melatonin 9:30 pm Fall Asleep ~12:00 wake up ~3am if cant fall back asleep take daxidorexant (1/2 dose) wake up ~ 6am (if cant fall back asleep take trazodone) wake up ~ 8am (take another 1/2 daxi Ever since I’m very severe if I don’t sleep 11+ hours I...

Not sure where to share this but if anyone has a US related ME/CFS data project pitch this journalist working for Mother Jones who is very good in her past Me/cfs reporting might take it up.

I remember thinking I had come up with that one and being giddy for a day

I’m not sure I understand why the context of a general spending increase by the US Government being that of the Funding of the Recover Intitiative means it wasn’t a genuine research program. I agree the funds were poorly allocated within the program and the impact was heavily underwhelming but...

I think recover was 1.15 billion (+ a 500 million addition in 2024).

I use Me as a casual shorthand amongst people who know since its quicker and simpler to write and me/cfs as a more formal or when audience includes people who might not know the illness well

Also lasting longer than a day

As a sidenote it’s really sad to see LGBTQ+ be shortened like this. If I recall correctly this is a direct consequence of the censoring US government grant funding bodies have had under the new government.