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

Carol Monaghan said:
Two identical tests, separated by 24 hours, must be carried out to properly measure the impact of exercise. Results from a single test could be interpreted as a lack of fitness. Two tests change that to something quite different. A healthy person will perform better the second time; an ME sufferer will most likely be worse.

Of course, the failure of the PACE trial to do that could simply be put down to bad science, but unfortunately I believe that there is far more to it. One wonders why the DWP would fund such a trial, unless it was seen as a way of removing people from long-term benefits and reducing the welfare bill.
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[My bold]

:thumbup::thumbup::thumbup:
 
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:

The Government are aware that the use of CBT and GET in treating CFS/ME has long been a controversial issue for patient groups, charities and some clinicians. That began with the publication of the NICE guidance 10 years ago and continued with the PACE trial. Since 2011, PACE trial data has been shared with many independent scientists as part of normal research collaboration, including the internationally respected research organisation Cochrane, which independently validated the findings. However, in the last 18 months, the attention on the trial has increased substantially, following a tribunal ruling in August 2016 ordering the release of the trial data to a member of the public, which the hon. Lady referred to. The data has since been examined more widely and critics, including some clinical academics, have suggested that it shows that CBT and GET are not as effective as the trial results suggested.
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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.

Caroline Dinenage
I know the hon. Member for Glasgow North West raised one such criticism at the oral evidence session of the Science and Technology Committee in January, concerning possible conflicts of interest of the PACE trial authors. On that point, in line with normal practice, all such conflicts were published with the trial protocol as well as the results. If she has evidence to the contrary, I would be very happy to discuss that with her afterwards.

Carol Monaghan: I thank the Minister for that. However, they were not disclosed to the PACE participants.
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Good catch by Monaghan there.
 
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
 
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seanpaul said:
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
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I'm not aware of that one. Do you have any pointers to information about it?
 
Esther12 said:
In what way did Cochrane 'validate' the claimed results from PACE? Shows what a problem those poor Cochrane reviews are though.
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This is a claim that the PACE team made at the time of the information tribunal as well. I think the only thing they have published is their very poor review of GET which includes PACE figures but they gave it a high rating (as a quality trial) but then they also switched their review outcomes.

Of course a meta analysis which combines results of trials using bad methodology will not give any more solid results than the original trials. PACE was good compared to the other trials they use.

There is the individual patient data review that they wrote a protocol for (with the PACE team) many years ago but we are still waiting for it to be published. But again if they don't understand the methodological issues and the other issues with PACE it will not be a reliable review.

I think this will end up being really damaging for Cochrane's brand.
 
Sasha said:
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)?
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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.
 
Carol Monaghan on FB:

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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.

 
Esther12 said:
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.
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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.
 
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Andy said:
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.
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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.

seanpaul said:
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
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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
 
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