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Yeah this is disappointing and bizarre

Because they haven't wasted enough time looking for what almost certainly isn't there.

One of these days, one of these studies will live up to the hype. Well, I guess it probably won't be hyped up by The Twitterati feat ChatGPT, but it will actually show something major.

Heres some talk about OLFM4 in this context

Okay so what do we think, does this live up to the hype of these twitter posts?

Same including strong food smells or smoke. But since my decline to severe (or possibly my first covid infection) I have become allergic to my old beard oil in like a throat closing up and wheezing a bit when I put it on kind of way. Which is kind of different imo to the way I react to strong...

I haven't seen any kind of a timeframe for the ixatuximab study, afaik there isnt a protocol or anything anywhere yet. It would be good if it finished before or at the same time as dara, esp if both were positive. It would provide an added degree of confidence for off label prescription and...

Sorry to hear about your experience! Neurologists seem particularly disposed to treating pwME badly for some reason...

Oh right! I didn't make that connection thanks.

Could you expand on this?

State sanctioned deterioration and death in the guise of 'confidence building'

The UK LRB (not sure if affiliated) is very pro BPS so this framing isn't shocking, but what is shocking is Lockwood herself accepting it and using it as well. Is she a literary Garner? I don't know much about her story. It is disappointing that this is what passes for literary representation...

In Germany there was also a football team whose fans showed pro MECFS advocacy messages during games. Something like this would boost visibility and public awareness.

I was supposed to have an EMG three years ago but never got it. Partly due to the prospect of travelling half an hour to be repeatedly shocked so that the data could be sent to a neurologist who looked at me like something nasty in a petri dish and clearly thought I was insane. Every time I...

I wonder if there is an equivalent of Germanys campaign with the empty beds outside government buildings...maybe just stealing that? Or a campaign highlighting the behaviour of the psychobehavioural school, the illogical arguments they use and the harms they have caused. I think we need a...

It's been five f-king years since RECOVER was announced! Five years. And they are giving themselves a congratulatory pat on the back for their trial design having achieved absolutely sweet f-a. They have squandered a billion and a half dollars on treatments that were almost certain to fail and...

'No not that one, maybe try over there' *gestures indecipherably towards a different part of the shore*

Whereas I am standing on the cliff up above yelling 'maybe look over there! Or over there!' to nobody in particular whilst gesticulating wildly at various stretches of beach.

Fair enough - do you mean like information to offer in return that they might find interesting? Do you think it might be more timely now?

Did you end up contacting these researchers @Jonathan Edwards?