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My concern is - who gets to decide when we do have a valid rationale? Is it the same bureaucratic machine that thinks the DHSC plan is appropriate and SequenceME wasn't a good investment? It may be that something comes up in the near future that shows us some of the mechnism- surely we need to...

But isn't the anktiva guy sort of shopping it around trying to find a clinical use for it? In the scenario we're talking about this would be a good and profitable one. That would be really unfortunate- I don't know enough to say how likely it is though. I think JE said a while back he thought...

Surely in that scenario more than half of patients who got the drug would respond because they are only enrolling people with higher NK cell counts. But other than that, what you've described would be pretty much the best case scenario- especially if NK cell count turned out to just correspond...

If only...

Its so frustrating cos if they dont want the money there are so many committed researchers who could use it...

Agreed this is the thing that really worries me. We are dealing with a situation in which the most promising drug trial in MECFS history could not find 2.2 million quid worth of funding from government or pharma. Nothing indicates the UK situation is any better

Yes I would probably have found flexible work eventually and not needed UC anymore if I had not been psychologically messed about with by doctors until i ended up severe. Now I recieve the highest form of PIP. This is pretty common thing with pwME.

Thats a good point, in the pilot they took months to reach a normal step count.

This is a great idea

Until it began?

Yeah I don't know about that account. Are there any other diseases where someone begins responding sixth months after recieving a monoclonal antibody @Jonathan Edwards

I didn't realise that, I don't know why they are even still offered to anyone. The long term symptoms some people report are horrifying. This is happening at my old uni, heard about it last night. Very scary. Poor kids. It's surreal to see Club Chemistry on the news Glad it doesn't spresd...

Yeah I really appreciate this approach too.

Thanks! Amazing they're moving so fast. Has she given any details about patient numbers, blinded follow up length etc for isatuximab?

But the blinding is what proves that the effect is real. If there is no blinding there is no proof it works or doesn't and no impetus for anyone to do a phase 3 or start prescribing it off label. I personally think the blinded follow up should have been six months, with more unblinded follow...

Thats what I thought was happening to me when I was mild...

I'd be interested to know what @SNT Gatchaman thinks of this paper

This sounds like it could be absolutely massive, so I assume someone is going to be along to point out how deeply flawed it is any minute :rofl:

I was surprised to see these names on the list.