UK Parliamentary debate today - Thursday 24th January 2019

Steve Brine is basically saying he doesn't see any need to make any changes or motions. He really doesn't get that people are being harmed does he?

"Everyone can deny any treatment they don't want" - except if they want benefits of course

 

Carol Monaghan MP
Thanks patients
Excellent research funded by charity and govt needs to take this seriously

VOTE - The AYES have it

Point of order - film mentioned

Now onto Newcastle football club...

 

And given the medics are supposed to be the experts - how the hell is a newly diagnosed patient supposed to have any clue what is good or bad for them to want. He is actually making it very clear just what pwME are up against. Hopefully CM's closing words will slam him.

 

F' brilliant! Was that voice? Any idea of how strongly it was carried!

ETA: Is this definitely confirmed?

 

There was no opposition, if that answers the question.

 

The original motion. Up thread somewhere.

 

Very very good!

 

It's a bit unfortunate that so much of the discussion was about superficial issues. Researchers in the field of psychology and psychiatry are essentially being allowed to produce junk science that then goes on to influence guidelines and public perception. And the lack of high quality biomedical applications is also a result of that. First, many researchers are misinformed and think ME/CFS can be cured with CBT/GET, which suggests there isn't much need for biomedical rsearch. Second, the applicatios will be judged based on how well the align with the established "wisdom" that ME/CFS is perpetuated by thoughts and behaviour. Families with children that have ME/CFS are being reported to social services because society believe CBT/GET are curative.

 

It was excellent, despite some MPs obviously feeling the time pressure as they spoke. Some very good speakers and points made.

I thought the response was less of a brush off than the last time. A bit more notice being taken.... but we’ll see where this all goes next I guess.

Now to try and wind down.... geeeze it was an intense couple of hours!

 

Not such a big deal, given the motion has been passed and should make it harder to sweep this under the table. This should provide real grist for the mill when tackling Cochrane, SMC (intrigued by what if any guff they are going to put out), PACE authors, etc, etc, etc.

 

I just want to thank everyone who has been updating this thread for those of us not well enough to watch or listen.

 

Agree some speakers didn’t take the angle that might have been taken, if they had spent a few hours on S4ME, but considering the very many issues that MPs have to keep up to speed on, I think the debate went outstandingly well.

 

It's an important step, but the root of the problem has not been acknowledged yet.

 

Hopefully be a bit easier now to expose such shameful lack of insight from government minister.

 

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 funds ,”excuse” put forward by the minister regarding lack of good research applications. He could slip that in as he wasn’t going to be challenged. This has been the MRC excuse also for zillions of years and they don’t offer solutions to get over the problem just use the excuse. The counter to that is that it’s a vicious circle, without a research base and with such a harmful narrative previously put out there by sections of the medical profession entirely against patient interests, it’s hard to overcome the stigma and attract research interest. Afaic the main thing that could overcome this 20 year stalemate of the same old, would be to put in to be in ring fenced funds. You attract researchers by saying here’s money if you consider dipping your toe in this field. Researchers might follow funding. Isn’t that worth a try when it’s bleeding obvious that a lot of the current woes are because we haven’t had research. I’m sad this brush off was allowed to happen and this wasn’t allowed to be discussed to bring light and a “so what do we do when you’ve been saying that for fifteen years” rather than heat, when it could have been prevented by stamping on the argument before it could be used , but hind sight is a wonderful thing.

There are limitations to this kind of debate structure. It was rushed and then because there was no come back to the minister then things remain somewhat unresolved. If he’d spoken as a counter to carols initial statement then what he said could have been challenged in the way the prime minister has sto stand and be challenged Not just give a statement , often pre formulated.

I was glad to see possible reinstatement of the appg. There were some senior politicians there. Justine greening just seemed to say , quite reasonably, dont we need much more research to progress and help people. Unfortunately the block to that is the, for whatever reason, shutdowns maintaining the stalemate with no innovation, vision or real commitment from funders and ministers with powers to do more.