Analysis of minister’s response in Westminster Hall PACE debate

R

Robert 1973

Senior Member (Voting Rights)
Here is my analysis of the response from Caroline Dinenage MP, Minster of State for Care, during the Westminster Hall Debate on PACE and its effects on people with ME:

https://www.meaction.net/2018/02/26...pace-trial-and-its-effects-on-people-with-me/

Please share and leave comments below the article.

Thanks to those helped, including @Tom Kindlon and Adam Lowe. Time and energy restricted me from including everything that was suggested, so please add anything I missed out in the comments below the article.
 
Barry said:
Really good. Thanks to all.

Emailed link to my hapless MP, with a note that this is not going to go away. But I doubt he will do anything until he sees sharks trying to bite his 'arris.
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Thanks, Barry. I found that making an appointment to see my MP was far more effective than writing. I think seeing me in my wheelchair, in a lot of pain and distress, being pushed by my septuagenarian mother had a significant impact. Alternatively, if you’re not well enough to get to the clinic, ask if they can come and see you at you home, as my new MP did.
 
Robert 1973 said:
Thanks, Barry. I found that making an appointment to see my MP was far more effective than writing. I think seeing me in my wheelchair, in a lot of pain and distress, being pushed by my septuagenarian mother had a significant impact. Alternatively, if you’re not well enough to get to the clinic, ask if they can come and see you at you home, as my new MP did.
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My wife has ME, and is mild to moderate. All he would see, is someone who walks with a stick and looks a bit tired, but otherwise seems OK. The very sort of person who is so easy to misjudge.
 
“In the most serious cases, people can be bedbound for weeks at a time.”

that is up there with "young children can't get it" and "most people recover".

it says many things, succinctly:

- /you/ don't need to be concerned. the worst it will do to /you/ is like watching your favorite soap opera for a couple of weeks with a mild flu to get out of having to go to school or work.
- it is possible for it to be a not-real disease.
- it isn't a public health issue and definitely not a crisis

francis collins and nih friends have used this trick also, even after being corrected. fc first said it on a tv interview show in an awed tone of voice.

whether it's incompetent or deliberate almost doesn't matter. it is /efficacious/ against us.

this is powerful propaganda. just like picking numbers from england alone, it's always anti-pwme.
 
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Those treatments were first recommended for patients with mild or moderate CFS/ME in 2007 in the NICE guidance, in line with the best available evidence, which showed that the treatments offered benefits.
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This bothers me every time I read it. I am a mild sufferer, by which I mean life-changingly ill but not completely housebound. GET and CBT should not be recommended for mild sufferers, because it will just make them moderate and then severe. If we are talking about ME/CFS then GET does not offer benefits to any category of sufferer. It may offer benefits to those suffering from chronic fatigue (whatever that is) but this is not to be equated with mild chronic fatigue syndrome, which is something completely different.
 
@TiredSam well said.

also, i greatly appreciate that you did not inflate severity labels. you also defined your term, and you made it clear that what we call mild is so severe that it is life-changing, while still [eye-opening to the general population] being mild from the perspective of the disease.
 
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Robert 1973 said:
Here is my analysis of
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I'd missed this was from you. It seemed unusually accurate, so I'd wondered who it was!

Good stuff. I especially liked the Cochrane bit.

“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.”
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In response, Prof Chalder stated that “disclosure to the Cochrane review does not count as disclosure to independent scientists as all three of the PACE principal investigators sat on the review panel.” [24b]
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I wonder if we could use the Ministerer's claims as a way to get MPs to apply some pressure on Cochrane to take the problems with their approach to CFS seriously.

Lots of good comments were already submitted to the Cochrane Exercise review, but Larun was allowed to avoid addressing them. Now a Minister is claiming that Cochrane "independently validated the findings" of PACE? They need to be challenged on that.

https://sites.google.com/site/mecfs...ic-fatigue-syndrome/primary-outcome-switching
http://www.cochrane.org/CD003200/DEPRESSN_exercise-treatment-patients-chronic-fatigue-syndrome
 
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Samuel said:
francis collins and nih friends have used this trick also, even after being corrected. fc first said it on a tv interview show in an awed tone of voice.
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I have no issue with this 11/04/15 Charlie Rose interview of Francis Collins except that, as is his style, Charlie Rose interrupts his guest just when they are about to say something interesting. In this case, he cuts off Collins just before he can utter the word "flu" or "infection." Yes, Collins doesn't describe the most serious cases, but he's trying to give a thumbnail overview - and, considering the interviewer, I think he was lucky to go into the detail he did. He was given all of a minute and 43 seconds to discuss it.

Charlie Rose: I saw something. It may have been associated with the NIH -- about chronic fatigue.

Francis Collins: Yes.

Charlie Rose: Did you write something?

Francis Collins: This just happened.

Charlie Rose: That's what I thought.

Francis Collins: I have been puzzled and frustrated about how little we understand about this condition. Now just -- here is the theme we've been talking about.

Charlie Rose: I'm talking about fatigue -- what is it?

Francis Collins: Yes. But chronic fatigue syndrome, people who have that diagnosis, it's a very heterogeneous collection of individuals. But the Institute of Medicine has just sort of defined what we should sort of limit it to is people who are profoundly affected by fatigue, oftentimes coming on after an acute -- [flu/infection].

Charlie Rose: How are you profoundly affected by fatigue?

Francis Collins: You can't get out of bed.

Charlie Rose: Oh...

Francis Collins: You are disabled. You are utterly unable to carry out daily activities. You have other things which exertion seems to make you worse instead of better. And you have sleep disorders. Sleep is not refreshing as it should be. You may have postural hypotension where you stand up, your blood pressure drops and then you pass out.

Charlie Rose: This is serious stuff.

Francis Collins: It's serious stuff. And it's particularly frustrating to see cases and there are hundreds of thousands of them, of people who were healthy and then have what appears to be just a flu-like illness, but they go to bed and then they can't get up for months. So we just announced we are going to make a big push to try to get the answer here. Bring some of these new technologies, of genomics and proteomics and metabolomics and imaging and figure out what is going on in this condition. And if we understood that maybe we'd know what fatigue of other sorts is all about. Why do people in chemotherapy get fatigue? We don't really know, wouldn't it be nice to have that answer. There are so many things you can start to ask about with the technology we have in front of us now.

https://charlierose.com/videos/23367 starts at 15:54
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Esther12 said:
I'd missed this was from you. It seemed unusually accurate, so I'd wondered who it was!

Good stuff. I especially liked the Cochrane bit.
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Thanks. You’re not confusing #MEAction with AfME by any chance? I’ve recently joined the former as a volunteer and would encourage others to consider joining too. I believe they/we are currently looking for someone to lead the organisation of the UK millionsmissing events.

@Tom Kindlon, @adambeyoncelowe and others on this forum helped with accuracy and references.
 
Robert 1973 said:
Here is my analysis of the response from Caroline Dinenage MP, Minster of State for Care, during the Westminster Hall Debate on PACE and its effects on people with ME:

https://www.meaction.net/2018/02/26...pace-trial-and-its-effects-on-people-with-me/

Please share and leave comments below the article.

Thanks to those helped, including @Tom Kindlon and Adam Lowe. Time and energy restricted me from including everything that was suggested, so please add anything I missed out in the comments below the article.
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Robert, is it possible to have this released in any other format? The MEACTION website is impossible for me to read because of the way in which the page is laid out

Thanks for producing this.
 
ukxmrv said:
Robert, is it possible to have this released in any other format? The MEACTION website is impossible for me to read because of the way in which the page is laid out
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Do you have reader view? Makes it much easier to read.

eta: attached .txt of article
 

Attachments

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Robert 1973 said:
Here is my analysis of the response from Caroline Dinenage MP, Minster of State for Care, during the Westminster Hall Debate on PACE and its effects on people with ME:

https://www.meaction.net/2018/02/26...pace-trial-and-its-effects-on-people-with-me/

Please share and leave comments below the article.

Thanks to those helped, including @Tom Kindlon and Adam Lowe. Time and energy restricted me from including everything that was suggested, so please add anything I missed out in the comments below the article.
Click to expand...

Thanks very much for this Robert!
 
“The results of the PACE trial, which examined pacing therapy, cognitive behavioural therapy, graded exercise and specialist medical care for chronic fatigue syndrome, were published four years after the NICE guidance. The trial ran from 2005 to 2011 and, contrary to what the hon. Lady said, was primarily funded by the Medical Research Council, not the DWP. Total funding was £5 million and the MRC contributed almost £3 million.”

Maybe so, but how come the MRC agreed to allow a study they presumably deemed to be fundable on scientific merit, to be partly funded by a party with a clear conflict of interest? It is a bit like the MRC doing a cancer drug trial and allowing one particular pharma company to half fund the trial, which conveniently was unblinded so everyone would know which patients were on the company drug.

The MRC must have aware that the DWP had never before funded a trial of a therapy, for obvious reasons. It was not their responsibility so would obviously have been profligate unless of course it helped reduce the budget in the long term. But then funding a treatment for rheumatoid arthritis would do that just the same?

The only conceivable reason I can think of is that those in charge at the MRC genuinely believed that ME patients were malingerers and therefore it was reasonable for the DWP to fund a trial that supported that conclusion.

In response, Prof Chalder stated that “disclosure to the Cochrane review does not count as disclosure to independent scientists as all three of the PACE principal investigators sat on the review panel.” [24b]

I really love this. Dr Chalder seems to be good at putting her foot in it when it comes to trying to justify the shenanigans. So Cochrane is a stitch up according to her - right from the horses mouth. I have personally heard nothing back from Cochrane about my recent comments on Larun, White, Sharpe, Brurberg, Glasziou et al. Iain Chalmers said it was nothing to do with him that he works for the same outfit as Glasziou and co-authors erudite reviews on how not to make mistakes on trials!

Someone really needs to write a book on this. Maybe we should get that Mueller chap to look into it once he has done with the other stuff.
 
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