Discussion in 'General ME/CFS News' started by Andy, Jan 17, 2019.
This post and the following ones have been moved from this thread.
#ME action UK replied to me on facebook with this comment:
“ we are working hard to launch a tool to help you email your MP urging them to attend the debate. You'll be able to edit it to add your own language. As Carol Monaghan has been granted a debate in the main chamber of the House of Commons, this means she will also be putting forward a motion for MPs to vote on. This will set out what the House of Commons believes the government should be doing to address the needs of people with ME. We'll publish the full text of the motion as soon as we have it.”
Hope they can publish it very quickly or it will be too late to help. I realise it’s not their fault it’s such short notice hopefully it’s ready to go and just needs pushing live.
Absolutely agree. I hope interested Members can find time to attend and are already in communication with Carol.
Also- they will need to be briefed. Any ideas on which documents would be useful to send them? I am pretty much out of action for the time being (cardiac appointment in London on Mon for which I am resting, and after which I’ll be crashed) so would be grateful for suggestions. Just checking in occasionally.
Now that is very good news. So if my understanding is right, this will be a full parliamentary debate.
I'm guessing that by being a Backbench debate, that simply means backbenchers are allowed into the debate; hopefully it does not mean that only backbenchers can join in?!
For non-UK people: the government ministers, and their opposition counterparts, are deemed to be frontbenchers; all the other MPs are backbenchers.
Archaic terminology based on where MPs sit in the House of Commons.
ME Association posted on Facebook:
The motion of the debate is worded as follows:
“That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of ME, supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and medical professionals to ensure they are equipped with clear guidance on diagnosis of ME and appropriate management advice to reflect international consensus on best practice, and is concerned about the current trends of subjecting ME families to unjustified child protection procedures.”
Backbench debate means that it is taking place in time set aside for issues raised by backbench MPs across the house. Most of the parliamentary time table is controlled by the government, there’s also some time set aside for the opposition.
As with the Westminster Hall debates the government will have to field a junior minister to attend and “respond” to the points raised. The opposition will also have a spokesperson there.
From the article:
In the UK, CBT and GET are still the NHS’s approved treatments under guidelines from the National Institute for Health and Care Excellence (NICE). NICE is undertaking a review of this. But this has proved controversial. Because as ME Action UK reported, among the people sitting on the review committee are a co-author of the PACE Trial and other contentious medical professionals.
In August 2018, over 100 academics and 10 MPs published an open letter calling for the PACE Trial to be reviewed. But as Monaghan previously told The Canary, there are other concerns over the PACE Trial:
Equally concerning was the revelation that the trial was partly funded by the DWP [Department for Work and Pensions] and that key investigators had links to major health insurance companies. The results of this controversial trial have in some cases been used to sanction people living with ME.
Is the tense correct? It's in the past and they have all stopped advising insurance companies? I doubt that.
I would feel reassured if we had someone help prepare Ms Monaghan for the debate. The PACE authors will give the usual answers that can seem credible to those who don't know better. If we can show how nonsensical these answers are, we will win this debate. If not, it might be a draw.
Looks like the debate will be early in the day:
edit: Actually, I'm really not at all clear what the above indicates about timing. I may have misread it.
EDIT 2: Apparently Monaghan expects the debate to take place around 2pm.
Sounds like a great motion to me.
I think that #MEAction are leading this and forward ME involved. This is where skills such as lawyers to sort out the killer arguments might help. If as many MPs as possible can really grasp sone of the big issues and failings beyond I know someone who experienced this and that, it could be very good. I don’t know how many would be expected to attend? I hope that carol continues to use hard hitting language like scandal and I hope tangible steps for progress are put forward beyond the basic proposal. If Nicky Morgan attends she’s also a good orator.
I took it to mean that they had links at the time of the PACE trial. This does not necessarily mean that these links then stopped.
Yes, I gather that @dave30th and @Jonathan Edwards also met Carol Monaghan in the autumn, so she should be very well informed. I also understand that a new briefing document for MPs is being prepared which deals specifically with the issues raised in the Motion.
However, there is a difference between knowing the facts, and understanding how to counter the BPS arguments. No doubt PACE Club will be busy briefing too so it will be interesting to see how many MPs swallow their propaganda, and whether others are knowledgable enough to shoot it down. With a bit of luck Sharpe et al may send a few more “unbecoming” emails.
And with a bit more luck Simon Wessely might expand even further on his deficiencies in trials methodology. Can someone remind me: I think SW had some sort of advisory role with PACE ... if so, what? Or have I got that wrong?
Working on it and it will be published by tomorrow at the latest! Not a lot of time but plenty still!
Ms. Monaghan seemed to think it would be at 2.00pm on Thursday 24th, so just after lunch. Should be on parliamentary TV and might even be on the BBC (but that could be a long-shot).
The revised/updated briefing will be available tomorrow with a cover letter for people to invite their MPs to the debate.
All the best
Given this is an important HoC debate concerning the science surrounding a major clinical trial ... would it be reasonable to think that the media might report on it? Very interested to see who reports what, and especially the SMC. I'm sure they will be already planning what if anything they will say, regardless of what actually occurs on the day.
Separate names with a comma.