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It just speaks to the total insanity of Silicon Valley that they started pushing this as the climate crisis became an imminent threat. LLMs are not worth any of the impact these data centres will have. Before they enshittified it Google search worked just fine, and didn't require mass plagerism...

There's a tech journalist/blogger called Ed Zitron who is pretty convinced (and pretty convincing imo) that this is essentially the case.

Ive just realised I don't know whether CA10 is raised or lowered in DecodeME and the fibro studies Edit: this is probably an oversimplified dichotomy and the answer is far more complicated im.sure

This would perhaps be an interesting connection to some of the things we've discussed recently but I assume the HLA DQ link didn't stand up in the separate analysis from what Chris apparently said at the Berlin conference.

Some form of non-24 was central to what I think of as the prodromal phase of my MECFS.

How do you square that with the fact that the 5 dara pilot improvers are still in remission years later according to Fluge? Surely if it is as you hypothesise here the improvement would be partial...

Wow that's deeply frustrating! Hopefully it can be secured in the next year - it would be so frustrating if all the data we needed were just sitting on some hard drives unable to be analysed. It's absolutely mind boggling that the government wouldn't spring for the cost of the analysis!

Thats excellent news! Does the total time of 1 year for phase 1 include the time it will take to write the analysis?

Is this real? I haven't seen it anywhere else. Great news if it's real! Edit: I mean they could have funded the whole thing and this isn't even enough for the DecodeME sample sequencing but it's a good start. Why give them enough for 6000 samples but not for 9000? That's some really flawed...

I wish doctors egos weren't a factor in whether or not I get safe care

Yeah if I had spontaneously recovered when I started GETing myself in 2020 I'm pretty sure I would be f-king unbearable lol. When I was convinced it was working but had just started to learn about severe MECFS ect I was like 'those people have a different illness to me, I don't think they're...

How do you know that? I haven't seen anyone who loves the UK MECFS services posting on reddit or anywhere. Well then we need to firm it up before we take it to the wider community. True unanimous consensus is very rare. We have JEs letter, we have an idea of what many on here think services...

@Tyler Hulett In case you are interested, here is the thread on JE et al's hypotheses paper from last year that was mentioned earlier in this discussion

To convince them this MECFS service isn't fit for purpose Yes That's not entirely clear, but could be discussed. JE has suggested rheumatology, but immunology and neurology are other options (neurology imo is a bad idea until neurologists are properly educated about MECFS) I think specialist...

Any ideas how it could be identified or hunches about what it might be?

It has been four and a half years since the NICE guideline change. Almost a decade since the PACE reanalysis. It is unacceptable that there is still no safe care and all thats being delivered is platitudes.

I noticed that - hopefully it's a sign of real interest in the field.

Did we ever discover which group was using these OX40 PET tracers?

I didn't know this! I did wonder why it hasn't been taken as hard proof F&M are on the right track.

I saw a reddit thread about this and a doctor on there was saying it is drummed into them over and over in training that young woman hyperventilating and anxious = panic attack. It's not much better if you present like that at a hospital as a man from my experience. The 'everythings stress...