Backbench Business Committee for next Parliament debate

I'm really pleased, and grateful, to see an MP really trying to sort the mess that is ME out. I think it is imperative that we get other MPs to help, which means not just making them aware of it and them saying they support it, but we need to properly inform our MPs about the important details. I think is important because there will be people whispering in their ears misleading them about a variety of issues.

 

I wasn't sure whether the lack of answer on timing was so the committee didn't think they have until 2020 to give us a debate, they seemed to be asking how much time do you have before NICE finish. Maybe I got the wrong impression.

 

Will something have to be done to prevent the rediagnosis of Pervasive Refusal Syndrome, or whatever new name they might have concocted, to take a case outwith the ME guidelines?

 

Just for clarification - Alex Chalk is my MP and was one of Carol’s supporters at the previous applications.

He has been appointed as a Parliamentary Private Secretary (PPS) to the Dept of Health and Social Care and, as such, is no longer allowed to ‘be counted’ as a supporter of the application for debate.

He has confirmed to us (his constituents with ME) that we still very much have his support, but that was why he was ‘lurking’ in the row behind.

 

Its just incredible that this is going on in parliament at the same time as NICE has appointed a BPS self serving committee for the review that looks like it is going to make things worse. We really need to make NICE aware of the parliamentary issue and how disgusted those MPs ate the status quo or GET and CBT.

 

That sounds good. Initial aims have to be realistic, clear, pragmatic and to the point, and nothing else to distract from that. Support for biomedical research also comes to mind, but not sure what the remit of this debate would be.

 

Research funds has to be there IMO and I think medical education and support and provision for the severe has to be too. This isn’t talked of enough because the people who are active in campaign tend not to be from this group for obvious reasons.

 

In case it's easier for anybody to watch, this is Facebook video version of Carol's presentation. It should be viewable by all, even if you don't have a Facebook account, but I can't guarantee it.

Code:

https://www.facebook.com/meactionscot/videos/1969112959849226/

 

I think that was included in the draft proposals.

 

They shone a big spotlight on their bullying by preempting the Cochrane withdrawal, but we can maintain some pressure over social media. This is a fight that we lose in the dark. We will continue getting some bad coverage thanks to the SMC but eventually some good as well.

Some people may take at face value that it's reasonable that this is just the butthurt whinings of people unhappy about being told they don't have a "real disease" but it looks increasingly ridiculous as people get exposed to the basic facts and the years of consistent and reasonable complaints. They control the message in the media but there are way more of us.

I will keep on doing that. I don't know how effective that is but our best weapon is the plain hard facts. Nothing's happening over here in Canada anyway as long as this BS maintains its stranglehold.

 

I think there is value to challenging on basic scientific principles, something Monaghan understands as a science teacher.

Medicine does not recognize unblinded trials with self-reported outcomes as credible evidence. That is all they have. And the Oxford criteria are useless tripe. They can't keep arguing that it's acceptable to apply their results as clinical evidence because... reasons. Especially in the midst of the crisis of replicability that specifically highlights the problems of loose methodology and poor selection criteria.

Let them argue that they simply deny it's a real disease and that we can't handle the truth. We know that's what they believe. Their mendacity is what's most infuriating but it doesn't hold up to scrutiny. Same as the allegations they made to block release of the PACE data. They folded under questioning. They have simply avoided accountability so far by not being subjected to questioning that did not allow them to deflect.

 

Ms Monaghan is fantastic. She gave me some hope after these insulting NICE panel nominations.

 

Can anyone fill me in with the names of the 4 speakers to the Back Benchers Committee? As well as Carol and Nicky Morgan, please can someone tell me the names of the men who spoke.
Also I didn’t understand the reference to three and a half parties being represented. I know where Carol and Nicky belong. The others?

Also do we know when the Committee will give their decision?

As @NelliePledge said, a welcome distraction from the most terrible week.

ETA: Cochrane, Nice and several medical appointments ( comorbidities) have crashed me so I may just be reading for a while.

 

Carol Monaghan SNP (Scottish National Party)
Nicky Morgan Conservative
Stephen Pound Labour (supported the former application for a debate)
Kelvin Hopkins Independent (Labour whip withdrawn due to allegations which are under investigation) (He was a member of the former APPG (All Party Parliamentary Group) on ME)

Alex Chalk Conservative is behind Carol in the front row of the observers - see my earlier post.(#24)

Usually committee provides their decision later in the week but, as the Chairman mentioned, they are waiting to be allocated more time for Backbench debates in the main chamber of the House of Commons.

ETA the post number of my earlier post to clarify.

 

Thanks @It’s M.E. Linda

 

Hear hear!

 

What about discontinuation of CBT also especially as the model used is used alongside GET as the behavioural intervention to make people exercise more.

 

That might be viable provided it is only targeted at the BPS proponents' version of it, as per your 'especially'. There will still be valid cases where normal CBT has a valid place in a supportive role for secondary issues, as true for many physical illnesses - it would be wrong to risk jeopardizing that, due to misunderstandings. I think trying to get that distinction across in such a debate might just muddy the water, when it really needs to be clear. If GET goes, then I think the do-more-exercise variant of CBT would wane anyway.