A general thread on the PACE trial!

It struck me more than once that there's a further problem if self-reporting: it’s hard to report that the nice people trying to help have been useless. Is this effectively controlled for?

A simple piece of psychology that makes sense to most people - except, it seems, psychologists.

 

I cannot access Twitter threads these days. I get blocked from moving from the first shot.

 

Jonathan, I don't know if this will help, but I found that when I am looking at the tweets (accessing them by clicking on them from the S4ME page), after a short amount of time, the "Log in" "Sign up" screen appears. I click on "Log in," and then the "enter your password screen" appears. I close this screen out with the X in the upper left corner, and then I can continue reading the tweets without further interruption. So far this has worked for me. Hope this works for you. Good luck.

 

thanks I will try it.

 

Forgotten the name of the (psychology) academic but he pointed out the mismatch between the support given to the (PACE) control group and the group who received the intervention (they had multiple times the number of interactions). So there really wasn't a control group.

 

Does any body know why the PACE trial was so expensive? They were only testing cheap treatments yet it cost the best part of £5,000,000.

 

I raised that question many times. Doesn't seem like others share that concern. I don't doubt they spent that money, but it's impossible to justify other than having created a large enough sunk cost that the trial was too politically desired and allowed the cheating to be made official.

This trial could have been run exactly as is for 1/10 (1/5 at most) of the cost. There was no technology, no equipment (since they ended up not using the actimetry) and the excuse of expensive training is both 1) a joke, unjustifiable and also 2) would negate the premise of this treatment being made available broadly as the price tag makes it uneconomical.

It says a lot that hardly anyone is bothered by how much money was wasted here without justification. Instead the huge cost is simply used as dead weight that people have to carry, because it was that expensive and that means people will use it to justify their interest.

 

I think this file relates to an earlier submission on the trial and they subsequently had to reapply.
But section 5 "Financial details of the trial" gives an idea where the money was going.

 

Going through this is interesting:

"Essentially the same". Makes the changes to outcomes during the trial especially unethical and unjustified. This was their 4th try at a formulaic methodology. Although they did clear that up by specifying later on that it's because they preferred better results. It's a good thing that medical research is rigorous and accountable. Wessely tried to explain this as necessary course adjustments, even though by their own admission they used a formula they themselves applied at least 3 times and had already sold as is to NICE.

Costs are as follow:

1. Research staff costs (I count 12, mostly nurses or data entry): £1,1M
   
2. Overheads: £504K
3. Equipment: £36K (most of which seem unnecessary, includes a too-small number of actimeters)
4. Travel: £64K
5. Additional costs including additional travel: £218K

The NHS provided therapist costs for a total of : £1,1M. So this would not count in their budget but probably is counted in the total cost.

I guess this was just the rough proposal and was revised, but this amounts to : £1,92M in direct expenses (described as total cost to the MRC) with an additional : £1,1M covered by the NHS for a rough total of : £3,02M.

Is the £5M cost commonly cited actually accurate?

And because he has revised the history of his involvement:

I don't understand the wording here, what was Wessely "director" of here? Ah, the CTU:

So Wessely was director of the Clinical Trials Unit. In addition to having co-authored the manual. Total passenger who was merely admiring how beautiful the cruise probably was (not that he was there, just imaging it must have been, I guess).

 

Note that figures in the document were from 2001 or 2002 when trial went on till 2009 or so. I might reply to this more with more other evidence. Got a good chunk of money (maybe £700,000-800,000 (?)) for an extension.

 

Different CTU. MRC CTU is not the same as the unit at Kings.

 

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.

 

Ah, but this is totally normal and accepted in mental health research. I get they didn't get the memo that this can be done with approval and even more frank admission that it was to achieve a better outcome. Cheating is normal, you can even get it approved. Of course those concerns only appear strategically, which is the other side of the same issue. Would this researcher in mental health be concerned with the exact same issues in PACE? Doubt it.

Officially allowing cheating is a slippery slope. The slope has been thoroughly greased and even buffered for maximum slipperiness.

https://twitter.com/user/status/1524690200290643969

 

Wow, how familiar does this stuff sound ...

 

It's the culture that's failing us. It's not just technical fault, it's damn politics. The problem is people and lack of accountability.

Continuing to pretend that health, and by extension healthcare, isn't inherently political is what makes the bad politics do so much harm. Like a sports referee who doesn't call penalties to avoid influencing the game, thus influencing the game even more.

Once that's recognized it becomes immoral to continue simply ignoring what the patients are saying, having no meaningful role to play in our own lives. But instead everything is maximally political and cultural baggage is sinking the whole damn boat.

 

They can see the problem when they don't believe in the treatments. Even though the problem has nothing to do with the treatments, and everything to do with a process that allows any BS to be "shown" to "help". I wrote many times how I'm surprised that the alternative medicine industry do not abuse this any more than they do, the formula is simple and cheap and can only be countered by fixing the underlying issues with EBM. Which won't happen because it would basically invalidate 95% of clinical psychology and all psychosomatic medicine.

How about a trial where the leaders were the inventors of the model (so in this case it would be the inventors of homeopathy) running the "definitive" "independent" trial where they showed that useless treatments "help", by cheating, no need for quotes here.

https://twitter.com/user/status/1537193019367051264

 

Walach (one of the authors of the homeopathy review) is the researcher who did that weird distant healing trial on CFS, discussed here:
Effectiveness of distant healing for patients with chronic fatigue syndrome, 2008, Walach et al | Science for ME (s4me.info)

 

Moved posts

Parliament 22nd June 2022

https://www.parliamentlive.tv/Event/Index/83bda8c8-db7a-4e5c-b216-7cd71efcba51

DWP PIP and PACE trial Peter white