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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

Same

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.

Apart from the position that it's real but they don't want to help us because its too expensive/politically inconvenient. Which is probably not what most of them actually believe but thats the message their actions send out.

Yeah this is probably it. But their public position suggests a torturous mental contortionism on the part of funders. Even if they think its psychosomatic, surely it doesnt matter what drugs are researched because none of them will ever work better than placebo! So there is no need to make this...

Which is really disturbing because it means that they realise that MECFS is not psychosomatic - because otherwise none of the possible treatments would work - but still stigmatise us and do not want to help us. I can't help but think something odd has gone on behind the scenes here.

The unsaid thing in all this - we are not as deserving as those with 'proper' diseases Also I wonder if there was any ranty person esque lobbing here. It's such a bizarre decision by any logical measure but very typical of MECFS neglect.