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“Another cool thing: our findings seem to have been independently validated by the @PutrinoLab, who recently showed similar preliminary data on this scientific conference (May 2024): youtube.com/watch?v=F3Sv9t… 10/11”

The science library in this forum also has a couple of shortish posts that would be relevant, I’m specifically thinking about the naming one, but others are good too.

amazing! if it looks feasible, maybe we can create a thread to discuss it

Thinking about the first option, yeah, it would only be affordable with GPT-2 or GPT-3, even GPT-3.5 via the API key would be stretching it

hmmm, maybe using the mayo clinic primer and a couple of solid reviews added with some select me-pedia pages for context?

Initial posts have been moved from another thread. I just noticed that now GPT-models pre trained on data are available for free users too. Is someone up to the task of training one on Me-pedia, trial by error, and science for ME (if members consent). It would be so much more useful for us...

Unknown, but it’s likely some of their staff have as they were often tagged too and their twitter accounts aren’t necessarily that huge.

The saline and generally the fact a decent chunk people with long covid get better with time.

I think we need to do something like this for melinda’s charity. I already collected a list of all her high ranking employees twitter accounts I could find.

They also cited the “Longhauler Advocacy Project” in their recent coverage, but cited LCAP multiple times: One letter by the advocacy group Long Covid Action Projectasking the NIH to consider corrections and retraction the Long Covid Action Project (LCAP), has requested $28 billion in funding

FYI campaign just started

Atleast 10% will have been diagnosed with some variation of a “functional disorder” or “somatic disorder”, even though they have an ME diagnosis explaining their symptoms. A large subset thereof (atleast in the countries I’m familiar with) will have been diagnosed with a “functional neurological...

Also I calculated exactly what LCAP’s demand of 24 billion for LC at the NIH is equivalent to, and it is more than the yearly budget of the NIH all cancers, all mental health diseases, all autoimmune diseases, all forms of dementia; AIDS, heart disease, and ALS put together. Data can be found...

I’m a bit concerned with the Sick Time’s Rpeorting of Long Covid. They seem to be doing a decent job, but consistently mention LCAP in a positive light in their articles.

I’m a bit scared with the rhetoric I often see in long covid communities along the lines of “spend the vast majority on clinical trials”. While I agree a substantial amount should be spent on clinical trials, basic biomedical research is what really has the potential to make substantial progress...

I’ve talked with quite a few people who have tried LSD, psyilicobin, or MDMA with ME/CFS. I just once was told that someone with mild ME improved for a year with LSD and then deteriorated again. Other times people described the experience as null or even overwhelming and leading to a crash...

@Kitty just so you know, you aren’t alone. On normal days I drink maybe 3ish liters, in PEM I have to make myself physically uncomfortable and thirsty and I still tend to drink 5-7 liters.

Do you think ARPA-H might be more promising in that regard? According to axios there are some politicians in the US trying to get 200million for ARPA-H for Long Covid. According to Wikipedia: The Advanced Research Projects Agency for Health (ARPA-H) is an independent entity within the National...

Yep, thanks for brining that perspective Trish. Sometimes I forget how much worse off we’d be without the prior fights that were won.

Agreed. Just don’t think it means we shouldn’t criticise preoblematic research either. Though I agree that it’s often unfortunately having a counterproductive effect, and we need to reflect on what strategies work and what strategies are seen as “harassment” or “militant patients” whether...