Backbench Business Committee for next Parliament debate

My Member of Parliament Carol Monaghan MP will be at the Backbench Business Committee meeting today at 2:30 to discuss the next UK Parliamentary Debate.

https://calendar.parliament.uk

This link for Parliament TV below should work nearer the time.

https://www.parliamentlive.tv/Event/Index/8b2d9a97-d4e2-4eef-ad77-4d045188b3df

If successful you should be ready to contact your MP's!

 

Is it a discussion about what to debate? Will she be putting ME/PACE forward?

 

My understanding from the meeting yesterday is that this is about bidding for a slot and maybe fixing a time for a debate in the House itself. The intention is to focus on under-resourcing of ME research and treatment and discontinuation of potentially harmful treatments rather than PACE.

 

Is there anyway the APPG could be reformed. What struck me at the last meeting was that there was a fair amount of repetition of points and also that whilst some MPs were very caring there was room for increasing knowledge not just about ME but the politics and care, research, funding side of it. Having a forum where MPs and charity representatives can meet beforehand would surely amount to a more effective debate with other MPs who will be less informed and perhaps resistant to challenge the medics establishment who are supposed to get things running Nicely on all fronts and the APPG could ensure follow up. MS has an APPG and it seemed enough MPs do care about ME and If there’s actually specific calls for action perhaps the APPG could feel more effective than the previous versions.

 

Excellent news! The meeting yesterday was really productive and Carol was in superb form. Crossing fingers and toes!

 

I understand that applications for debates need to be lodged to the Committee by a Thursday, to be heard the following Tuesday.

No sign of Carol in today’s meeting unfortunately. Will watch out next week.

 

The proceedings became "private" after a while and I couldn't see any sign of Carol in them

 

Carol did mention something about being too late for Tuesday although it was not clear what.

 

A productive and extremely positive meeting on the current developments on ME in the UK took place on Monday, 22nd October in the UK Parliament. Carol Monaghan, MP, and David Tuller, a Senior Fellow in Public Health in Journalism at the Center of Global Public Health, School of Public Health, University of California, met at the request of #MEAction. Our UK coordinator, Espe Moreno, was present at this meeting.

https://www.meaction.net/2018/10/24...rliament/?mc_cid=9a38d1f35b&mc_eid=c1fdea04b1

 

Here's a chance to give Carol Monaghan a thumbs up and/or an appreciative comment.

 

I have my alarm on to be watching Parliamentary TV at 14.30 today to see if Carol and supporters appear in front of the Committee!

ETA: link below should work 14.25 (GMT) onwards

https://www.parliamentlive.tv/Event/Index/0666480c-4fb5-443f-87bc-e295dabc0e58

 

Get in contact with your MP's if a debate is agreed.

See here:

https://parliamentlive.tv/Event/Index/0666480c-4fb5-443f-87bc-e295dabc0e58

 

I thought it went well. The Committee did not question the need for the debate which they seem to do with a lot of applications. The fact that Carol brought up the NICE guideline committee was great. Now it seems we just wait to be allocated the slot, fingers crossed it's soon.

 

Full extract here: https://parliamentlive.tv/event/index/0666480c-4fb5-443f-87bc-e295dabc0e58?in=14:42:55&out=14:53:00

 

Watched the clip on Facebook. Glad they’re actually going in for aims not just mores “awarwnessl . What will the aims be ? I’d like as much focus on the scandals of severe ME care, Medical education, research funds as PACE. it’s great the MPs care enough to intervene.,I still think a formal parliamentary grouping now, such as reinstating the APPG would make sense now. MPs need to be able to discuss with charities not just rely on anecdotes and in depth knowledge is key to moving forward meaningfully, eg referring critically to NICE yet not knowing when they were going to be published /renewed, which I think the question was.

 

I thought it was absolutely bloody marvellous
got just about everything in, PACE, 60% NICE committee being PACE supporters, powerful people in medical establishment, GET being harmful, need to make sure this guideline is right.

Only thing was issue of deadline? I would have thought that with regards the NICE committee that it is quite urgent as (if I read the NICE protocol correctly) once they start committee meetings the committee cannot be added to/changed(?)

 

I think discontinuation of GET, prevention of any further unjustified care orders on children, GP education, and rules for commissioning groups providing a real service.