Watt from MRC defends PACE in letter to Times

It's the old meeting the new - all the monks that transcribe academic books now have to be paid minimum wage.

 

Exactly, available formats and pricing of books has nothing to do with the writer, I wish people would appreciate this.

Welcome to forum, @Brian Hughes - am behind the news, did not know you had joined! And I am sure your contributions will be hugely valuable.

 

Still just hiding behind their processes. The only substance to the MRC statement is their reference to Cochrane's work, and we know how problematic that has been. It's already clearly laid out for them in Courtney's comments within the Larun exercise CFS review - I wonder if anyone at the MRC took the time to read it.

I thought that we still didn't know when the recovery criteria was changed? There seemed to be no reference to this in the TSC minutes. Did you find a date?

I know that you did go on to say that you were only talking about two of the trial's recovery criteria, but some people can be confused into thinking this is the same as saying a participant could have had baseline data which allowed them to be classed as recovered, so I'd be a bit more cautious with your phrasing on that point.

Possibly. At the PACE Information Tribunal MRC's Frances Rawles was trying to find excuses for not following the MRC's own policies on data sharing. If the MRC was arguing that the limited data released to Matthees (with no info on age, sex, location, etc) was already personal data that should not be shared, then how can they now make more data easily available?

That's true. Amazing to me that they've been able to get away with this anyway.

 

Until we see all reasonable requests for the data are honoured once it's in that system, my assumption will be that they will seek to avoid releasing it to undesirables, for one reason or another.

 

Maybe someone had a quiet word about not putting your foot in your mouth when you open it.

 

https://twitter.com/user/status/1034428780918517760

 

https://twitter.com/user/status/1034428780918517760


https://twitter.com/user/status/1034444299239391232

 

Good old ed Sykes. I’m so glad he sat on the CMRC board and changed his views zero and helped us so much.
Michael sharpe retweeted and liked it.

 

WHAT IS A PRIORITY FOR THE MRC?

I was intrigued to read Fiona Watt's assertion that research into CFS "remains a priority" for the MRC.

Having a look at the data....

1. In the past 13 years to 2016/7 £6.4m was allocated to CFS projects.

2. 45% of the £6.4m was spent on PACE. ie £2.9m.

3. less than one pound in £2000 spent on MRC research projects in 2016/7 was spent on CFS. £286k of £586m per accounts.

So

A. Not a priority is it?

B. The amounts spent have declined in the years 2015 to 2017.

In summary only loose change is spent on CFS research. PACE expenditures only appear significant in a pitifully small bucket.


The real damage from PACE is that it perpetuates the myth that "if only the patient tried harder..persevered they would recover." It's victim blaming.
The physiological problems of immune system recovery and directly related research receive pitiful allocations of cash.

EXPENDITURES MAY BE GLEANED FROM THIS DOCUMENT
Medical Research Council Expenditure on CFS/ME Research, by Project, from 2004/05 -2016/17, £k1

 

If you look at the "How It Works" section of the Clinical Study Data Request website, it gives a list of grounds on which the MRC will be able to refuse a request. And if you've been following previous attempts to access the PACE data, some of these reasons may sound familiar...

"I'm afraid this research proposal is not compatible with the participants' consent forms. Refused."
"I'm afraid we don't have the data available in the form you've requested. Refused."
"The study team is already planning to publish an analysis along those lines. Refused."
"You have a clear agenda to discredit our research... sorry, I meant to say we feel you have a conflict of interest. Refused."

I hate to be a cynic - and I hope I'm wrong - but the list of sponsors/funders checks that any research proposal will have to pass looks like it was specifically compiled to allow the PACE team to justify keeping their data locked away. And after Fiona Watt's Times letter I don't feel the MRC can be trusted to perform the role of honest broker.

 

I get the distinct impression that the MRC and SMC feel on the defensive!

There is a guy with orange hair who tweets like this.

 

Forgive me - I'm not entirely following the story as my attention is elsewhere somewhat - but is the suggestion that the 'extended version' is, in reality, a revised version?

Rhetorical questions and points but, firstly, they're not being entirely accurate if they're saying 'extended version' as there is some excision (which they appear to have not alerted readers to), also, what was the reason for the removal of that inflammatory paragraph? Was there some concern that - as was pointed out to them - the 'harassment' issue had more or less been rubbished in a legal setting?

The original inclusion of the 'harassment' stuff was, I'm suggesting, knowingly done as I simply cannot believe that Ms. Watt was unaware of the judgment two years ago. It was untrue propaganda the inclusion of which was highly unprofessional.

Again, sorry if I'm being a bit dim/repeating the obvious again etc!

 

Yes, that's my understanding too. And there's no sign of any TSC approval for the recovery criteria they eventually used, or any evidence that this criteria was devised before they analysed data for the 2011 Lancet paper.

 

Thank you! I have just landed. Am delighted to be here! I hope I can contribute constructively now and again...

 

Oh boy! MS and Co will not be amused! And given the how the book's blurb on the back cover says it's "essential reading for students wanting to understand how to better scrutinize psychological research methods ...", I think that very neatly confirms that PACE is being used as an educational example of appalling research methodology. A slam dunk as @dave30th might say .

Also:



"Ruinous" is a good word for it.

Could someone clarify Brian Hughes' point 'b' for me please in the context of PACE. I presume he means how treatments the authors favoured were selectively hyped, but not sure if I'm missing something beyond that.

Feels like it could be worth a whip round to send Michael Sharpe a complimentary copy!

 

A random hogwash generator maybe.