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Nice to see MERUK speaking out on funding. Since trying to collaborate with the MRC they seemed to go quiet on it.

Really a whole page on funding? how can that be? If he came to the first debate there wasn’t much progress to report, he seemed a bit frustrated at having to come to another one and really only offered action on GP education. If he’s your MP it must be nice to be writing to someone more...

Well I still don’t know what was meant, but moving on.

Well do you agree with that?

Well he was very short of time wasn’t he? One thing I did agree on , since they seemed to let the other debate over run, it was poorly arranged because it wasn’t a satisfactory ending to the debate, the amount of time he had he couldn’t cover much which would have been good to hear. Or he had a...

I would strongly disagree with that

Steve brine seems to have watched unrest and taken as the take home message that everythings just fine in the ME world.

I think that’s a bit of mis characterisisation of what people expected if they expected something, although you are making a point. This is also the second or third debate, not the first so I had expected a degree of movement. I wasn’t exoecting his brief put down on funding after all the MPs...

I apologize for being rude. I did deduce, perhaps wrongly, from your comments that you and the other drs who have that specialism advised carol in a certain way when you said you briefed her. I would not say that those who’ve made decisions on ME in the MRC have had any real expertise In it, to...

Again I’m confused. You don’t think parliamentarians should interfere with any independent body or just medical elite ones ? I disagree, especially ones like the MRC connected to the government by allocating funds drawn by taxation, they have a public health responsibility, they failed on ME...

https://hansard.parliament.uk/commons/2019-01-24/debates/FA1BBC27-37A7-4BFD-A2C0-A58B57F41D4D/AppropriateMETreatment The notes are out now “ME research remains an area of very high strategic importance for the MRC. I do not have time to go into all the money granted. Surely it would just...

Is there some contradiction and little point of patients lobbying MPs on research funding action and them speaking on it, if carol MP isn’t going to take that further because she’s been briefed it’s not the ministers, or MPs Place to interfere. There’s no point saying we need more funding in...

B but parliament did take exceptional measures on brain tumours, including allocating or insisting on funds to stimulate research

The minister talked a lot about GPs. Did he address the issue of medical school education? He didn’t propose ways to reduce stigma so what makes scientists and drs want to research ME if as one said it’s known as Multiple or many excuses in the science world...... the CMRC was clearly the MRC...

I’d imagine it’s very NICE like and severe lite. I’d be interested. As advocates we really need to learn about this

Yes that’s good. If we had an appg all those MPs would know that important stuff . It’s good to see that line couldn’t wash after the DoH putting it out widely last year in the media that we were getting significant funds

He hardly mentioned children or the severe , yet quoted that the severe should get help via non existent specialists.

The MPs did really pretty good (thanks very much to them) and genuinely care I think, they didn’t have to attend and a good number did, .... the minister less so. MOs seemed quite well briefed and moved by constituents experience. It would have been helpful to pre empt the medical research...

Geez what’s the point of writing to MPs for objective scrutiny if they’re going to reply bsck that and tell you how much a priority your highly debilitating illness is, with an array of treatments available it seems to be targeted to the individual, a glorious pick n mix of CBT and GET or GET...

I was just wondering what happens next , if a fair amount of MPs attend and they vote to support the motion, what are the hopes or plans for the next stage to actually get what MPs hopefully agree we should have ...