PACE trial funding: FoI requests

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Hello,

I recently placed a number of Freedom of Information requests with the funders of the PACE trial, named on the QMUL website.


All the funders replied to my requests.


All four named funders are below, with the donations they disclosed to me:


The Department of Health (and Social Care)

£200,000


The Department for Work and Pensions

£90,000


The Chief Scientist Office of the Scottish Government Health Directorate

£250,000

(“A further £165,055 was provided to NHS Lothian for Excess Treatment Costs”)


The Medical Research Council contributed two sums: £2,076,363 and a later £702,975.


The MRC said: “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).”.


Therefore it would appear that, on the face of it, all the named funders contributed a total of £2,779,338, the first three contributions added into the total sum that the MRC gave to the trial.


However, this is where things get a little more complicated….


To cross check the figures further (the MRC had more or less confirmed what the other three had told me) I contacted the people who carried out the trial - QMUL.


QMUL firstly gave me a slightly amended figure: £2,779,362; a very small difference and one that I did not question. But, secondly, QMUL claimed that the Department of Health contributed £1,633,020.


Now, I'm assuming that this figure of £1,633,020 is an additional sum to the £200,000 figure that the DoH told me they had contributed to the trial, via the MRC. However the DoH did not disclose this sum to me thus I have contacted the Department to ask them to confirm this undisclosed contribution.


Therefore the monies accounted for total to about £2.8m. IF the DoH confirm what QMUL told me, that sum accounted for will be approximately £4.4m.


I have not included the £165k for excess costs.


As you can see, the total (unconfirmed) sum is a bit short of the often quoted £5m.


So, why did the DoH not disclose the extra contribution of £1.6m, assuming that QMUL have told the truth?


Is the total cost of the trial quite a bit lower than the much-quoted £5m?


If the cost of the trial is indeed £5m, where has the other money come from?


At no point, by the way, am I suggesting that financial impropriety has taken place, but I am curious to know more about the funding.


One final interesting note: QMUL told me that they were unable to provide me with a final cost of the trial.


All the FoI requests here, apart from the Chief Scientist Office: https://www.whatdotheyknow.com/user/g_ryan/requests
 
Last edited:
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Could there be anonymous donors? But wouldn't their donations still need to be declared?
Well, I don't know.

Given that there appears to be an undisclosed payment from the DoH and QMUL, despite being handed millions for carrying out work relatively recently, are unable to provide me with a final cost for the trial, you could be forgiven for thinking there is some ambiguity in the financial data given.
 

alkt

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its widely thought that the department of work and pensions funded it to the tune of two million pounds .I don't know where that figure originated from but it has cropped up a lot over the course of investigating pace discussions.
 
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I agree. Casts doubt - makes you wonder what they might be hiding - and why.

its widely thought that the department of work and pensions funded it to the tune of two million pounds .I don't know where that figure originated from but it has cropped up a lot over the course of investigating pace discussions.
I've never seen anywhere near £2m mentioned in regards to the PACE trial.

What prompted me to put in the FoIs were that when Carol Monaghan referred to the trial as being funded by the DWP in the Houses of Parliament, Caroline Dinenage (answering) clarified by stating that the DWP funded part of the trial.

Every time I had seen a figure for the cost, it was £5m. Nobody seemed to question this, not even QMUL. I'd asked (on Twitter) whether anyone had a breakdown of the figures but nobody could point me to anything, so I started the series of FoIs.

I've not seen anything to suggest that the DWP have given more than £90,000. I know people are very critical of the Department - myself included - but, so far, I cannot 'pin' this one on them.

There is, of course, the question of why the Department was funding such a flawed study but that's not my mission here; it is merely to ascertain who paid and how much.

For the immediate future, it looks like the Department of Health has more to answer.

We might not know the full story for a long time.
 
Last edited:
Messages
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343
Hello,

I recently placed a number of Freedom of Information requests with the funders of the PACE trial, named on the QMUL website.


All the funders replied to my requests.


All four named funders are below, with the donations they disclosed to me:


The Department of Health (and Social Care)

£200,000


The Department for Work and Pensions

£90,000


The Chief Scientist Office of the Scottish Government Health Directorate

£250,000

(“A further £165,055 was provided to NHS Lothian for Excess Treatment Costs”)


The Medical Research Council contributed two sums: £2,076,363 and a later £702,975.


The MRC said: “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).”.


Therefore it would appear that, on the face of it, all the named funders contributed a total of £2,779,338, the first three contributions added into the total sum that the MRC gave to the trial.


However, this is where things get a little more complicated….


To cross check the figures further (the MRC had more or less confirmed what the other three had told me) I contacted the people who carried out the trial - QMUL.


QMUL firstly gave me a slightly amended figure: £2,779,362; a very small difference and one that I did not question. But, secondly, QMUL claimed that the Department of Health contributed £1,633,020.


Now, I'm assuming that this figure of £1,633,020 is an additional sum to the £200,000 figure that the DoH told me they had contributed to the trial, via the MRC. However the DoH did not disclose this sum to me thus I have contacted the Department to ask them to confirm this undisclosed contribution.


Therefore the monies accounted for total to about £2.8m. IF the DoH confirm what QMUL told me, that sum accounted for will be approximately £4.4m.


I have not included the £165k for excess costs.


As you can see, the total (unconfirmed) sum is a bit short of the often quoted £5m.


So, why did the DoH not disclose the extra contribution of £1.6m, assuming that QMUL have told the truth?


Is the total cost of the trial quite a bit lower than the much-quoted £5m?


If the cost of the trial is indeed £5m, where has the other money come from?


At no point, by the way, am I suggesting that financial impropriety has taken place, but I am curious to know more about the funding.


One final interesting note: QMUL told me that they were unable to provide me with a final cost of the trial.


All the FoI requests here, apart from the Chief Scientist Office: https://www.whatdotheyknow.com/user/g_ryan/requests
OK, here's an update:

I asked the Department of Health about the QMUL claim that the DoH contributed an extra £1.6m in funding to the PACE trial. Today the DoH gave me a reply. This is 'the bottom line' from them:

"In addition there has been no further funding to this project or any other projects on Myalgic Encephalopathy/Chronic Fatigue
Syndrome at Queen Mary University London. DHSC/ NIHR has not contributed a further £1,663,020 according to our records."

So, in other words. QMUL claimed the DoH gave a further £1.6m to PACE, the DoH say they haven't (no record of it).

https://www.whatdotheyknow.com/request/dohsc_funding_of_pace_trial#incoming-1160120
 

Dolphin

Senior Member
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Here are two sources for the £5m or so.

=====Source 1 =====
http://tinyurl.com/ydsv857
i.e.
http://www.rae.ac.uk/submissions/ra5a.aspx?id=176&type=hei&subid=3181

You are in: Submissions > Select unit of assessment > UOA 9 Psychiatry,
Neuroscience and Clinical Psychology > University of Edinburgh > RA5a UOA 9 -
Psychiatry, Neuroscience and Clinical Psychology University of Edinburgh

[..]

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



=====Source 2 =====

From figures below:
£2,076,363
£1,800,600
£702,975
£250,000
------
£4,829,938 + DWP money (unknown)


(Yes this is the same web page but it is a summary of a different entry)

http://tinyurl.com/ydsv857
i.e.
http://www.rae.ac.uk/submissions/ra5a.aspx?id=176&type=hei&subid=3181

You are in: Submissions > Select institution > Queen Mary, University of
London > UOA 9 - Psychiatry, Neuroscience and Clinical Psychology > RA5a Queen
Mary, University of LondonUOA 9 - Psychiatry, Neuroscience and Clinical
Psychology
RA5a: Research environment and esteem

[..]

White showed that recovery from CFS is possible following CBT (Knoop et al,
2007). The MRC funded PACE trial, led by White , evaluates CBT, graded
exercise, adaptive pacing and usual medical care in the treatment of CFS, and
is over half-way completed (http://www.pacetrial.org/) (PACE trial MRC
04-09 £2,076,363, DH Central Subvention 04-09 £1,800,600; MRC PACE trial
extension 09-10 £702,975).
=========
==================

SCOTTISH PARLIAMENT - WRITTEN ANSWER

2 December 2005

Health Department

Janis Hughes (Glasgow Rutherglen) (Lab): To ask the Scottish Executive what
funding it has awarded for chronic fatigue syndrome/myalgic encephalomyelitis
(CFS/ME) services or research since the CFS/ME short-life working group
reported in 2002.

(S2W-20924)
Lewis Macdonald:

NHS Boards are given unified budgets, increased by an average of 7.6% in the
current financial year, from which they are expected to meet the costs of
services for people with CFS/ME and all other chronic conditions. It is for
NHS Boards to decide how their unified budgets should be distributed, based on
their assessments of local needs.

The Chief Scientist Office (CSO), within the Scottish Executive Health
Department, has responsibility for encouraging and supporting research into
health and health care needs in Scotland. CSO is currently contributing
£250,000 to the Medical Research Council project 'Pacing, Activity and
Cognitive behaviour therapy: a randomised Evaluation (PACE)' which compares
different approaches to the clinical management of patients with CFS/ME.
 
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343
Here are two sources for the £5m or so.

=====Source 1 =====
http://tinyurl.com/ydsv857
i.e.
http://www.rae.ac.uk/submissions/ra5a.aspx?id=176&type=hei&subid=3181

You are in: Submissions > Select unit of assessment > UOA 9 Psychiatry,
Neuroscience and Clinical Psychology > University of Edinburgh > RA5a UOA 9 -
Psychiatry, Neuroscience and Clinical Psychology University of Edinburgh

[..]

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



=====Source 2 =====

From figures below:
£2,076,363
£1,800,600
£702,975
£250,000
------
£4,829,938 + DWP money (unknown)


(Yes this is the same web page but it is a summary of a different entry)

http://tinyurl.com/ydsv857
i.e.
http://www.rae.ac.uk/submissions/ra5a.aspx?id=176&type=hei&subid=3181

You are in: Submissions > Select institution > Queen Mary, University of
London > UOA 9 - Psychiatry, Neuroscience and Clinical Psychology > RA5a Queen
Mary, University of LondonUOA 9 - Psychiatry, Neuroscience and Clinical
Psychology
RA5a: Research environment and esteem

[..]

White showed that recovery from CFS is possible following CBT (Knoop et al,
2007). The MRC funded PACE trial, led by White , evaluates CBT, graded
exercise, adaptive pacing and usual medical care in the treatment of CFS, and
is over half-way completed (http://www.pacetrial.org/) (PACE trial MRC
04-09 £2,076,363, DH Central Subvention 04-09 £1,800,600; MRC PACE trial
extension 09-10 £702,975).
=========
==================

SCOTTISH PARLIAMENT - WRITTEN ANSWER

2 December 2005

Health Department

Janis Hughes (Glasgow Rutherglen) (Lab): To ask the Scottish Executive what
funding it has awarded for chronic fatigue syndrome/myalgic encephalomyelitis
(CFS/ME) services or research since the CFS/ME short-life working group
reported in 2002.

(S2W-20924)
Lewis Macdonald:

NHS Boards are given unified budgets, increased by an average of 7.6% in the
current financial year, from which they are expected to meet the costs of
services for people with CFS/ME and all other chronic conditions. It is for
NHS Boards to decide how their unified budgets should be distributed, based on
their assessments of local needs.

The Chief Scientist Office (CSO), within the Scottish Executive Health
Department, has responsibility for encouraging and supporting research into
health and health care needs in Scotland. CSO is currently contributing
£250,000 to the Medical Research Council project 'Pacing, Activity and
Cognitive behaviour therapy: a randomised Evaluation (PACE)' which compares
different approaches to the clinical management of patients with CFS/ME.
Thanks for the reply. However there's one or two points.

Didn't the CSO money get paid to the MRC therefore the £250,000 which you're quoting (which I assume is from the CSO) is lumped in with the c.£2.8m from the MRC?

Unless you're suggesting that the DWP added more funds than we're aware of the official figure from the DWP is £90k. Again that's included in the MRC sum.

We're aware that the DoH gave £200,000 (again that appears to have been part of the MRC contribution) however I am not aware of the "DH Central Subvention 04-09 £1,800,600" entry. Given that I previously mentioned that there was, at least, £1.6m unaccounted for, this might explain something. However, the relevant parties have not been totally forthcoming with information and there is a question mark over whether this £1,800,600 does or does not include the £200,000 that the DoH handed over as part of the MRC contribution; leaving roughly £1.6m which is the unaccounted-for sum.

Furthermore I am assuming that "DH" in this case is indeed the DoH.

From my basic sums it still does not add up to £5m.
It may do - nobody gets everything right - but more information would be helpful.
 

Dolphin

Senior Member
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OK, here's an update:

I asked the Department of Health about the QMUL claim that the DoH contributed an extra £1.6m in funding to the PACE trial. Today the DoH gave me a reply. This is 'the bottom line' from them:

"In addition there has been no further funding to this project or any other projects on Myalgic Encephalopathy/Chronic Fatigue
Syndrome at Queen Mary University London. DHSC/ NIHR has not contributed a further £1,663,020 according to our records."

So, in other words. QMUL claimed the DoH gave a further £1.6m to PACE, the DoH say they haven't (no record of it).

https://www.whatdotheyknow.com/request/dohsc_funding_of_pace_trial#incoming-1160120
It looks like they may have just looked payments to QMUL. There were seven centres. Also the time period is only for 3 years which seems odd.
 

Dolphin

Senior Member
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FINE got £400,000 odd from Department of Health along with £800,000 odd from MRC. PACE had a lot more participants and generally was a much bigger trial. Approval for them was announced together.
I’m very sceptical the Department of Health only gave £200,000 to PACE.
 

Dolphin

Senior Member
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Those RAE submissions are very important to universities. I doubt they are very inaccurate.
 
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FINE got £400,000 odd from Department of Health along with £800,000 odd from MRC. PACE had a lot more participants and generally was a much bigger trial. Approval for them was announced together.
I’m very sceptical the Department of Health only gave £200,000 to PACE.
So do I. We might be in the amazing situation of believing QMUL figures when they say that they received £1.6m further from the DoH.
 

Dolphin

Senior Member
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http://meactionuk.org.uk/magical-medicine.htm
The cost of the PACE Trial (and cost?effectiveness)

It is now known that additional funding was granted by the MRC but the cost of
the PACE trial to the MRC was originally stated as being £1,921,883.00 and the
cost to the NHS as being £1,179,909.00, an initial total of £3,101,792.00
(this figure may exclude the usual 40% add?on which is awarded with Class I
grants ; ) moreover, it is known that this figure has increased substantially.

As noted in Section I above, the cost of the PACE Trial is said by Professor
Sharpe to have risen to about £4 million :Co?CureACT:RES:22ndOctober2008), a
cost that many people regard as scandalous.

The MRC component consisted of research staff costs (£1,097,266.00);
Overheads(£504,742.00); Equipment, including Actiwatch Plus activity sensors
(the use of which was abandoned because Peter White deemed it to oonerous for
participants to wear one strapped round an ankle at the end of the trial, but
many people believe it was because there would be no objective evidence of
improvement shown by the Actiwatch sensors, a finding that would be
inconvenient to the Investigators, therefore no objective data were to be
collected), computers and software, heart rate monitors, stop watches, 18
audio machines and 3,150 audiotapes (£36,360.00); Staff Travel (£64,880.00),
and Consumables, (£218,635.00); this figure includes Action for ME’s
consultancy costs of £4,312.00. The NHS component consisted of the cost of
therapists.

When recruitment to the trial proved to be such a problem, an additional
amount of £702,975.00 was granted by the MRC (MRC PACE Trial extension
2009?2010).
Costs to the NHS (from early in the 2000s) These were listed in a document
posted on the internet called the PACE Trial Identifier
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0404B&L=CO-CURE&P=R3461&I=-3

as

"Costs to the NHS: £1,179,909
Costs of therapists: We have approached our NHS providers for these costs.
We need 7 WTE therapists in the 6 centres: 2.5 WTE of CBT, 2 WTE
physiotherapists, and 2.5 WTE OTs. Considering different costs in and out of
London, this amounts to £241,424 p.a. over 4.5 years (including 6 months
training), a total of £1,086,359. Service costs amount to £93,550. Total:
£1,179,909."