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

[My bold]

 

ME Association press release and blog:

Government-funded ME/CFS trial ‘one of greatest medical scandals of 21st century’

http://www.meassociation.org.uk/201...al-scandals-of-21st-century-20-february-2018/

With additional comment from Carol Monaghan, MP.

 

Hi, @Russell Fleming!

On this thread, we're wondering what we should do to follow up on the debate. Has the MEA any plans for what patients might do now? If so, is there anything you can say about them (on that thread)?

 

I've only just read through the transcript, and thought that there were a few slips and errors from Carol. Hard to avoid that, especially when so many people are interrupting with their own comments, but I thought it would be useful if she'd had someone who was really on top of all the details of PACE read through a draft of her speech. It would be great if we could make the most of having her as an ally, rather than risk her getting push-back for needless mistakes.

 

From the Minister's response:

In what way did Cochrane 'validate' the claimed results from PACE? Shows what a problem those poor Cochrane reviews are though.

Also the Minister's statement shows how Matthee's victory turned things around.

Good catch by Monaghan there.

 

I think the Minister was wrong to suggest that the use of CBT and GET in the treatment of ME has been a controversial issue for 10 years.

I would put it a 28.

 

getting any minister to admit the problems, answer questions and have to look at this is the real victory

recall White and Wessely and Co lobbied for Gov to exempt them from Freedom of Information - meaning the reanalysis would have never happened

people might also forget that PACE dislocsed data to Alex Mitchell at Leicester and he did some reanalysis and he put recovery circa 10% (half of the 22%) reported by PACE - so when people mention them sharing data - yes they did and other experts in psychiatry called them out on rates too

 

I’m not clear what it is ok to say about this, but UK ME charities were already having these discussions before yesterday. There should be another debate but sometimes there is a short window (eg a week) between hearing a debate is going to happen and it happening.

This obviously isn’t great for brainfog so what people can do ahead of time is to prepare your personal story as an email for your MP. BUT DON’T SEND IT YET. Wait to hear when the right time to email is.

Depending on what has happened to you personally you might want to emphasise a narrative of
1 harm from GET
2 ineffectual CBT
3 lack of treatment
4 social care neglect
5 stigma and prejudice
6 consequences eg benefits, child protection, employment

Something that could be read out like the examples in yesterday’s debate.

 

https://twitter.com/user/status/966247464205537280

 

Carol Monaghan on FB:

WATCH: My debate on the PACE trial and its impact on people living with ME

As I have said, I hope this debate is only the starting point and that the PACE trial will be subject to wider debate in the House of Commons.

I thank the hundreds of people living with ME who have been in touch with me to offer their support and share their experiences, and I will continue to do all I can to ensure that their voices are now heard.

 

Just a thought I had but is there something that, as clearly and succinctly as possible, lists all the issues with PACE and why they are issues, all in one document? That is more meant as a question to all rather than being aimed solely at Esther12.

 

I really could have done with something like this myself this morning. A referenced briefing document ?
(was trying to write an email)

edit to delete TMI

 

http://www.drmyhill.co.uk/drmyhill/images/a/a8/GMC_complaint_letter_DOC.doc

eta: I was actually impressed with the amount of detail in this letter but have not scrutinised it with regards to accuracy.

 

I don't think it's possible to make something like that. PACE is too complicated, and with too many problems. There are good summaries of problems (like the new paper from Wilshire and colleagues) but they inevitably leave a lot out.

I don't think I ever knew that to forget. I couldn't see anything via google either. Where's that info from?

PS: and welcome to the forum @seanpaul - especially if you come bearing new PACE info.

edit: Hold on - you must mean this, that I had forgotten about. I'd assumed that Mitchell was using the data secured by Matthees for that analysis, rather than that he was granted access to new data himself. (I thought Mitchell's analysis was a bit odd and pointless tbh). http://apt.rcpsych.org/content/23/5/288

 

@Sasha re: the title of this thread - should be Carol Monaghan MP (not MSP)

 

That's weird - I'd assumed all Scottish MPs would be MSPs, but you're right, she's not listed as one.

 

An MSP is someone voted to stand as a member of the Scottish parliament in Edinburgh. Scottish MP's who serve at Westminster as part of the UK government are MPs, so Carol Monaghan is an SNP MP.