Analysis of minister’s response in Westminster Hall PACE debate

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.

 

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.

 

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.

 

have emailed link to Carol Monaghan

 

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.

 

I also CC'd Carol Monaghan in me email to my MP. Seems right that he sees me copying to her also.

 

Thanks for this. It helps me understand other developments, like the release of the minutes of the two "oversight" bodies.

 

“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.

 

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.

 

edit:

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.

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

 

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.

 

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, 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.

 

Do you have reader view? Makes it much easier to read.

eta: attached .txt of article

 

Thanks very much for this Robert!

 

Not for me sadly. I put it into reader mode which changed to a black background with the text laid out differently and i made me nearly sick to try and read from there. Was worse for me than the last one.

Thanks for the file. Can read it now. Much appreciated!

 

Here is a PDF version:

 

“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.