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There aren't enough words for how contemptible this is.

This is quite encouraging!

This is an insane stipulation by the ZonMw people. Why must governments stand in the way of progress like this?

You would hope so. Maybe some of them requested biosamples!

I was assuming that there will be at least some private immunologists/rheumatologists who begin providing dara if it is successful in phase 2. I agree in part but I also think caution must be tempered with an acknowledgement of how urgent this situation is. I think it would be very difficult...

That understates the risk just a tad. [Sent from my sickbed]

And what has been done with these biosamples? Honestly, I could have made more of a difference to the field if you'd given me a tenth of the money recover has had and I am a random sick guy posting on a forum. They are the biggest f-king medical research institution on the planet. This has been...

Me neither- all the responses start bang on six weeks too...

I wouldn't be recommending people get it now but I for one will be trying to get it if phase 2 responses looks like phase 1. I know I will not be alone in that. I make no encouragement to others to do the same, that is just how things are. And we have a lot of people in very dire, life...

I have had a thought about the blanket no off label drugs stipulation. If we have a situation in the near future where, say, daratumumab is successful in phase 2 and the improvements are as striking as in the pilot, and people begin to get it off label privately - might we not encounter a...

But surely in that model if the neurons burnt out people would stop having the sickness behavior symptoms. Even if they had other horrible symptoms from having no CRH neurons? Thanks for the explaination, it's appreciated.

Bullshit Disorder We Made Up and Other Bullshit Disorder We Made Up: similarities and differences in people we arbitrarily slapped these labels on.

So neurons in the brain and nervous system respond to immune signals from cells in tissue - like maybe bone marrow - and those signals affect the signalling the neurons do in the brain - theoretically turning on sickness behavior etc?

Could you explain this part for the more brain fogged among us (i.e. me!) This discussion is really interesting but I dont quite follow this bit.

I haven't heard of them being tried - i dont know much about them, could you explain their relevance to this paper?

No because you see, our magic brains made us sick because we were doing life all wrong and so all these people needed to be paid the big bucks to teach us to go for a walk in nature and have a chat with our families and maybe do some sit ups. We could never have thought of this on our own. So...

Hopefully it will cause a great deal of harm to the authors reputations when the science comes through for us. This is all going to look as utterly indefensible as it really is. Unfortunately in the meantime it will get pwME and LC sectioned and forced into harmful 'therapies'

That's disappointing but it sort of makes sense, thanks.

Perhaps some of the bright minds on here might be able to make something of it!

Or they never find it, because antidepressants dont work for anywhere close to everyone and therapy isn't enough.