Tues 20 Feb | UK parliamentary debate: PACE trial and its effect on people with ME - Carol Monaghan, MP

Oh. Crap. I think you might be right. Can't think why this wasn't on our radar...

 

Thanks very much, Russell.

If you move the bar to 11:01:00 that's the start of the debate and it goes on for half an hour.

 

Ooooh Sir Simon ... careful those slopey shoulders of yours don't let that knighthood slip. You have gone on record many times after all, saying what a wonderful trial PACE was.

 

Carol also made the point repeatedly that NICE etc need to listen to patients.

She asked for assurances for compulsory training on ME for GPs, and the minister replied, "the Royal College of Physicians identified CFS/ME as a key area of clinical knowledge that GPs should have as part of their qualifying examinations".

Now it just needs to be the right information that they are examined on!

 

Even if the limbs have the capability, if the physiological signalling to them is screwed, it will still be a physiological condition.

 

Another good point that was raised by one of the MPs was removal of CBT GET now, and not waiting for the new guidelines in 2020.


eta:

• Paul Blomfield (Sheffield Central) (Lab)
  The Minister makes the point that final guidance is expected in October 2020, but given the significant doubt over CBT and GET and their impact now, does she recognise the strong case for NICE to suspend the current guidance, which points people towards those potentially damaging treatments?
  
  

 

A direct link to the start of the debate is http://parliamentlive.tv/event/index/cf2fde9d-f327-4bf4-8e72-1fc6124b8998?in=11:00:54

If you use this, wait a couple of seconds for it to 'rewind' as it will start showing live footage first.

 

I've started a thread to discuss what we should do next:

https://www.s4me.info/threads/how-to-follow-up-on-the-carol-monaghan-debate-in-westminster.2513/

 

AfME summary of it - https://www.actionforme.org.uk/news/pace-trial-westminster-debate-our-summary/

My favourite bit, "We were really worried but thankfully Carol didn't make any mention of how we enabled this piece of poo to go ahead".. (Not really, I made that up, but they do helpfully identify all but one of the other MPs who commented.)

 

Thank you Russell.
Now watched but I found the format difficult when trying to identify points that would be useful to take forward. Some were obvious ( Nicky Morgan) but others will need further review, having got lost in the shuffling. My brain fog is particularly bad. I think Carol Monaghan did really well to stick to her arguments and her preparation was impressive.

I think it would be so good if Jeremy Hunt were to be inundated with issues following from this debate from the ME community via their MPs.

 

https://twitter.com/user/status/965915192130498562

 

Yes this is critical.

Protection of patients is paramount.

NICE agrees guidelines presently are not fit for purpose, yet are failing to remove them. So potentially two more years of iatrogenic abuse.

Perhaps NICE needs to consider the legal consequences of this, surely any new patients harmed by CBT/GET over these two years would have a damn good case against them?

NICE, if you don't care sufficiently about the care and protection of patients, perhaps you'll be motivated by self preservation to take appropriate action to protect NICE from legal action?

 

Wow, wasn't Carol fantastic!

 

PACE: "...one of the biggest medical scandals of the 21st century"


Carol Monaghan MP on PACE: "When the full details of the PACE trial become known this will be put down as one of the biggest medical scandals of the 21st century."

Carol Monaghan MP on PACE: "...the impact of the PACE trial on those with ME has been devastating."

 

I agree and feel this is our best defence, ironically.

 

Agree with all the comments here. Carol Monaghan has done amazingly well. Hope she can get some more TV/radio coverage. Agree that it was hugely significant that no MPs intervened in defence of PACE.

One small disappointment was the lack of emphasis on the need for massive investment in biomedical research in order to develop effective treatments.

Before anyone wastes precious energy transcribing the speech/debate (@Russell Fleming) remember the full transcript will be published in Hansard.

Finally, I know this quote has been posted here already but it’s worth repeating with the video:
https://twitter.com/user/status/965934306307854338

 

Not really. Their theory seems to be that thoughts alter the physiology, and that the physiology can be returned to normal with therapy.

It's not clear what therapy would be. Other papers the same authors are currently involved with involve magnetic and sound stimulation of the brain I suspect they've given up on trying to talk patients out of being sick, and are now desperately clutching at straws while quacking in confusion.

It really is shocking that these projects are getting funded. They must have connections.

 

I think they missed a few. There were 12 MPs who made comments or asked questions:

1 - Jim Shannon DUP - Shouldn’t NICE abandon BPS therapies now?

2 Jim Cunningham Labour - Employers don’t understand the suffering involved in ME, which affects employment

3 - Alex Sobel Labour/Co-op - A typical constituent story of obtaining no treatment

4 Rachael Maskell Labour/Co-op From a former physiotherapist MP, any intervention should be patient-led

5 John Howell Conservative - The PACE trial has been condemned by many clinicians; what might an appropriate trial find?

6 John Lamont Conservative- Specialist clinics are needed in Scotland

7 - Layla Moran Lib Dem - A constituent story about the effect of ME on children

8 Alison Thewliss SNP- The cover-up and way PACE was carried out is a miscarriage of justice

9 - Nicky Morgan Conservative – Very important debate that needs more time and wider debate in the House of Commons. Just because academics believe in the trial, there are many sufferers for whom other treatments have not been pursued, and is the Minister angry about that?

10 Luke Pollard Labour/Co-op– It’s also about believing the patients - patients are not believed about the condition, they are not believed about the PACE trial, patients should be listened to.

11 Helen Whately Conservative – NICE guidelines review is welcome but meantime alternative treatments [to BPS] urgently need to be looked into and offered to patients.

12 Paul Blomfeld Labour - Does the Minister recognise the case for suspending the current NICE guidelines on CBT and GET given they are potentially damaging


ETA added 12th MP

 

Hansard transcript now available:
https://hansard.parliament.uk/commo...-4566-940D-249F5026FF73/PACETrialPeopleWithME