A series of PACE funding FoI requests

Yes. My guess is that the sum is either side of £5m but NOT £5m. I may be being pedantic but it is bugging me and we shouldn't necessarily assume that the funding is completely beyond questioning. The lack of transparency here is not giving me confidence, given the PACE results and QMUL's desperation to keep data from the public gaze.

 

I had a quick search but couldn't find where I first got the £5 million figure. I have it in my head that it was from an official source (not a patient/critic), but this was from before I was keeping notes on things. I don't think that there's any real problem with using this figure to illustrate that it was an unusually expensive trial of CBT/GET, and I think most people realise that it's unlikely to be exactly 5 million. It would be good to know what the total amount spent on PACE, and attempts to defend it, is.

 

I'm still not a fan of quoting it *without* some sort of 'health warning'. Even (as far as I know) QMUL don't quote it on their own website. Until it's absolutely verified I'm not going to say '£5m PACE trial'.

 

One source:

 

Separately £4,919,938 from figures below:

£2,076,363
£1,800,600
£702,975
£250,000
£90,000

I think rounding to £5 million, particularly in tweets where there is not much space to say things, is reasonable.
------

 

There we go... all that needless wondering when we should have just asked @Dolphin !

 

PS: I bet the total cost is now a lot more than that now if you were to include all the time spent trying to defend the indefensible.

 

Sorry, I'm still not going with it.

 

The MRC money included other funds that you have quoted (DWP, CSO, DOH). That information is out there.

https://www.whatdotheyknow.com/request/mrc_funding_of_the_pace_trial#incoming-1134199

 

It's not correct. He's separated DWP and CSO funds from the MRC total but kept the MRC total.

https://www.whatdotheyknow.com/request/mrc_funding_of_the_pace_trial#incoming-1134199

 

There's the source from 2008 saying:

"the PACE trial (7 UK centres) of chronic fatigue syndrome (CFS) treatments
(MRC; £5.0M);"

I think that the phrasing of that FOI response could be a bit messed up:

"The total funding amount provided by the MRC to QMUL to support the PACE
Trial was £2,779,361. This included the contributions from the Department
for Work and Pensions (£90k), Department of Health (£134k), National
Institute for Health Research (£66k), and Chief Scientist Office (£250k)."

I don't think that can mean that the MRC gave funding to the DWP in order for the DWP to fund the PACE trial. That just doesn't make sense, does it? Why wouldn't the MRC just fund it direct? Does the MRC give any funding to the DWP? That would seem a bit odd to me to. I don't really know what it does mean though.

 

It says to me that various organisations gave money to the MRC/pooled money with the MRC (including the DWP) which was then given to QMUL. The FoI answer clearly states that monies were added to the MRC contribution - not given separately. I'll quote from my email correspondence with the CSO from earlier this year:

"Scottish Government Chief Scientist Office contributed £250,000 towards the costs of the Medical Research Council funded PACE trial".

The CSO money therefore is INCLUDED in the MRC money - it is not separate.

 

I see, so the MRC total given to you included contributions from those other funders. Yeah - that does make sense (still seems a bit odd to me to do it that way, but then I've never funded a multi-million pound trial).

But there's still the 2008 source saying:
"the PACE trial (7 UK centres) of chronic fatigue syndrome (CFS) treatments
(MRC; £5.0M);"

 

I remain to be fully convinced. The MRC in its accounts has things like
e.g.
Medical Research Council Expenditure on CFS/ME Research, by Project, from 2004/05 -2016/17, £k1
has £2,779,000 for PACE:

If the Medical Research Council actually funded a smaller amount, I would think there is a reasonable chance they would give a lower figure.

It is hard to know anything for definite.

 

If one accepts that the money from the Chief Scientist Office in Scotland and the Department of Work and Pensions is included in the MRC money, one gets £4,579,938

from figures below:

£2,076,363
£1,800,600
£702,975

that's £5 million, rounded to the nearest million.

We also know that considerable sums have been spent on other things such as the Matthees tribunal case.

 

How do you explain this from the MRC FoI reply:

"The total funding amount provided by the MRC to QMUL to support the PACE
Trial was £2,779,361. This included the contributions from the Department
for Work and Pensions (£90k), Department of Health (£134k), National
Institute for Health Research (£66k), and Chief Scientist Office (£250k)."

I can only read that as circa £540,000 of the MRC money came from other sources and shouldn't be separated without subtracting those sums from the MRC money.

 

QMUL themselves, more or less, back up what the MRC told me. More or less: https://www.whatdotheyknow.com/request/funding_of_pace_trial#outgoing-820271

QMUL state the nearly £2.8m (which tallies with what the MRC say) that QMUL received but don't tell us what the CSO and DWP gave. That's presumably because the CSO and DWP gave their money to the MRC, as we gathered from the MRC FoI answer.

The DoH said they gave the MRC £200,000, again included in the MRC money. However, QMUL also said that the DoH gave them (QMUL) a FURTHER £1.6m. It's in the FoI answers.

Going on the FoI answers so far (and cross checking them) the £5m figure is not arrived at.

 

Maybe there are two different issues here?

1) How much did the PACE trial really cost? IMO we're probably never going to know, and at this point a lot of the organisations involved are going to want to avoid admitting the full true cost.

2) Do we have a respectable source for the £5 million estimate? I think that the one Dolphin provided is fine, and that if anyone were to complain about the use of this figure that source could be cited as a reasonable justification for it.

 

I don't know how monitoring or accounting of these funds are overseen, but given some, or as I understand, all of these funds are taxpayers' money, there should be some government oversight, and a paper trail of how much was spent on what, and when. For this information to not be readily available, or clear, is unacceptable.

 

What doesn't make any sense is that The Department of Health (and Social Care) state in an FOI reply that they have contributed £200,000 which is included in the MRC figure. In a response to an FOI requesting how much they have contributed to the PACE Trial funding for Queen Mary University of London they replied

It's strange they didn't mention the subvention funding of £1,800,600 in reply.

In further replies in an FOI request to Queen Mary University of London

I can only assume then that the £1,633,020 listed by the QMUL as the Department of Health contribution is the subvention amount on top of roughly £200,000 (£167,580)
Still weird that the Department of Health didn't mention it in an FOI reply though. Were they answering to the specific amount of £1,633,020, I doubt it because they stated there hadn't been any other funding.

My head hurts.