UK Parliamentary debate today - Thursday 24th January 2019

The representatives of the Scottish Government this morning were quite disappointing but the committee were very good. Not really letting them off the hook. They mentioned setting up a working group and were very concerned by the poor attitude of some doctors to people with M.E. and wanted to change that. I missed the very beginning but they seemed to also be organising a proper 'count' of people with M.E. organised by official data collectors, similar to ONS I suppose.

ETA changed Parliament to Government

 

I wasn’t able to listen but from what I’ve read and especially the poor response from the Health Minister I feel disappointed too. I don’t know what I expected but it wasn’t that.

No urgency. No clear understanding. No proactive planning of any worth. Just same old spiel. Typical not answering the questions asked, not addressing harm and bluffing his way through the issue of funding for “proper” research.

I’m not clear on what has been gained? Where can Carol go from here? How can she break through the pre prepared response? In that format it’s not really a debate? It’s like he listens, makes a few of the right noises and then churns out the usual stuff that resolves nothing in particular.

 

http://elearning.rcgp.org.uk/course/info.php?id=93

 

https://twitter.com/user/status/1088453653709475840

 

I would argue that the minister's response was less important in many ways than having a substantial number of MPs, from all parties, stand up in the Commons and say that the way that pwME have been and are being treated is wrong. That more money should go to biomedical research. That CBT shouldn't be used as first line treatment, and GET shouldn't be used at all. That PACE is crap. All of the things that us patients have been saying for a long time and have been dismissed for.

Unfortunately, this was never the end point. It's just another battle that we have won, and that has turned the tide in favour of us a bit more. More battles will come, and we might lose some, but the momentum, I believe, is in our favour.

 

Yes. You have a point.

 

I think this is the remit of Parliamentary select committees and there is one that is aware of the problem of PACE. But if such a committee is advised by the accepted experts that all is well it is hard for it to take things further. If all professors of mathematics say two and two is five then how do you establish they are wrong? I realise that things are more complicated but there real obstacle here is medical politics.

The CEO of MRC says PACE was fine.

 

Thanks @ukxmrv I looked that up earlier but obviously I can’t actually see the content, just a very vague outline. Would be great to know the content, I expect bps based so not helpful. I was looking again at RCGP comments on the 2017 consultation on whether the NICE guidelines should be updated. They said yes - but wait for it because the model was too biomedical and not enough on the mental health aspects! Screenshot attached. So I expect the course content will surely be bps based?

 

I think it might be.

 

Could we do an FOI on this? Suspect not, since it's basically a closed club (RCGP). Anyone know?

 

Talking of that kind of thing, any sour grapes from Sharpe's Twitter feed?

 

Not much right now but this made me chuckle - Follow the money!!!
https://twitter.com/user/status/1087023908438593536

EDIT to add for those that can't see

 

Hansard transcript, https://hansard.parliament.uk/commo...4BFD-A2C0-A58B57F41D4D/AppropriateMETreatment

 

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 parliament if it’s argued parliament should not intervene. Those who Make that argument, @Jonathan Edwards etc, what are you proposing to significantly get research interest and funding up quickLy if MRC highlights AND conferences isn’t working. Wouldn’t it have been better if parliament, DOH HAD intervened years ago and insisted on incentivising funding being offered by MRC in spite of deep seated prejudice at the MRC who are now funding hardly anything.

Dictating what the MRC do all the time, of course inappropriate, is not the same as investigating, making suggestions on a controversialissue in crisis etc. if parliament doesn’t have any authority over the MRC, who does?

NB I’m quoting here @Jonathan Edwards from above here in yellow, I only said the last two lines of it.


This wasn’t made a point of , ie parliament intervening on brain tumours when medicine was failing. I would have thought it would have been a good model and example as what needs to happen for ME. Otherwise if we just keep the name and criteria of current use, to get progress we await a change from NICE, uncertain how great and then research validation to remove stigma and inspire other researchers... but isn’t that a long wait.

 

Hahahaha. No. Definitely not a chance of that.

It should look silly to anyone paying attention but this has been the PR strategy all along and they will keep saying that on their death bed.

 

True but she cited Cochrane as her main defense and hid behind the reviews--before Cochrane made it clear that the exercise review should be retracted, rejected the revision, and withdrew the IPD protocol. So things are in some state of flux.

 

Uhhh.. the RCGP cites the FINE trial as evidence. That's... shockingly bad.