PACE Trial application to MRC for funding in 2002

I don't think that letter is helpful for AFME, particularly as we know what was to come. Giving "full support" to PACE was clearly a bad idea.

Interesting that this June 2002 letter talks about APT as successfully defining the elements that would be recognisable to those who have tried the approach [pacing] and who they [AfME] represent [that was the rather contorted phrasing they used - I feel like it implies more than it says].

Later on they were acknowledging that APT is quite different from the self-learned form of pacing patients tend to use and endorse, seemingly in response to patients raising concerns about this.
 
Esther12 said:
Later on they were acknowledging that APT is quite different from the self-learned form of pacing patients tend to use and endorse, seemingly in response to patients raising concerns about this.
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Is it though? I've still not heard from anyone (either one way or the other) who can confirm whether APT is a reasonable description of pacing. Part of that may be because it did so badly in the trial (and one doesn't want to endorse something that did badly), but that was understandable because of how it directly conflicted with the outcome measures used. But how could it have been better?

Also, those in the SMC group were given access to "self-help" materials, so could pick and choose what worked best for them to a certain extent - although they received no "professional" input.
 
Joel said:
Well done JtJ. Nothing shocking in that letter but hopefully a lesson for AfME and other organizations not to be so willing and trusting in situations where they're asked to support such a thing in future. Seems very naive. I'd hope organizations are more professional nowadays and would scrutinize more carefully and attach appropriate conditions in similar circumstances. No idea if that's true or not.
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It perhaps shows the issues of charities interacting with research in that they don't necessarily have the skills to analyse the methodology. There are issues raised with APT in pace both in terms of it doesn't describe what people mean by pacing and that pacing is not a therapy but a strategy used by patients. I suspect they should have been more analytical but those running a charity aren't scientist hence its hard.
 
Lucibee said:
Is it though? I've still not heard from anyone (either one way or the other) who can confirm whether APT is a reasonable description of pacing.
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Part of the problem is that people use 'pacing' to mean different things, and there risks being a tendency to have 'experts' define pacing, rather that the patients who prefer a self-learned approach that requires no interference from a therapist.

There's stuff like this from around the time PACE was announced:

3. What is APT? How is it defined?

Adaptive pacing therapy.

There are many descriptions of pacing in the USA and in the self-help and information materials in the U.K. with lots of differences between them.

The form to be used in the trial was designed by Action for M.E. and researchers from the PACE team, after much discussion. It closely resembles pacing taught by the charity Westcare (now part of Action for M.E.), and has been approved by their experienced therapists. Because the PACE team have had to decide on one particular therapy, it cannot cover every single person's description of what they believe pacing is, but is based on the years of practical experience accumulated by Action for M.E. and Westcare.

By giving it the title APT we recognise that most pacing is self-learned, whereas this will be taught and supervised by a therapist, who has been trained in pacing.

4. Why not use the self-learned type?

We would risk biasing the results.

Those having GET and CBT would all have had a therapist working with them. Given that having a sympathetic therapist usually influences the success of a therapy, having two parts of the trial supported by a therapist but one not, would have risked not giving pacing a fair chance."
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http://web.archive.org/web/20030623012748/http://www.afme.org.uk:80/news/pace-q&a.shtml
 
Adrian said:
It perhaps shows the issues of charities interacting with research in that they don't necessarily have the skills to analyse the methodology. There are issues raised with APT in pace both in terms of it doesn't describe what people mean by pacing and that pacing is not a therapy but a strategy used by patients. I suspect they should have been more analytical but those running a charity aren't scientist hence its hard.
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I have a vague memory that at the time AFME had a trustee who was a statistician or access and comments from one
Also they have medical advisors and other people they can consult.

AFME knew exactly what it was doing at the time.
 
Lucibee said:
Which is exactly what they then did by allowing the SMC group to have access to self-help materials!

I've always thought the APT was actually quite a good control, in that it totally minimised the effects they would expect on the outcome measures they chose.
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The 70% rule seems like a likely counter-productive imposition to me. Also, it's very hard for anything to really control for the sort of biases likely to be induced by claims CBT/GET had been found to be effective, and the promotion of models of illness which encourage the view that improvements in health reflect well on the patient.

Having said that, I don't think APT was designed to fail.
 
I think it's difficult to define 'pacing' particularly for a trial in this way.

My big problem with both the trial and that letter is in the description of 'pacing' as a form of treatment. It's not, at least as far as I am concerned. It's a way of coping with effects of the illness in the hope that the body recovers over time.
 
4. Why not use the self-learned type?

We would risk biasing the results.

Those having GET and CBT would all have had a therapist working with them. Given that having a sympathetic therapist usually influences the success of a therapy, having two parts of the trial supported by a therapist but one not, would have risked not giving pacing a fair chance."
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Laughable! The bias is introduced into pacing by not having a biased therapist seeking to influence the way someone responds to their questions when that's the whole point of behavioural intervention?

Why the hell call it the PACE trial if you dont use pacing as practised by patients.

Surely they wanted also to measure the effects of therapy namely the whole point having a therapist or not.

Seems so obvious they were running scared of testing their own hypotheses about GET and CBT run by therapists being superior to patients applying common sense pacing.
 
JohnTheJack said:
I think it's difficult to define 'pacing' particularly for a trial in this way.

My big problem with both the trial and that letter is in the description of 'pacing' as a form of treatment. It's not, at least as far as I am concerned. It's a way of coping with effects of the illness in the hope that the body recovers over time.
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That's what they do. Flash back to the days of "graded exercise" and patient being told to increase their symptoms regardless of the damage and how they feel afterwards.

Patients come up with a way of trying to manage their symptoms which they call Pacing Themselves and it spreads from group to group, in magazines and around the country.

We speak out against the harm the graded regimes are doing and talk about the things that help us - like rest and pacing.

The Psych lobby then appropriated the word. Not as an accident but deliberately. Then they can define to whatever they want it to be.
 
This was written after Peter White and Trudie Chalder among others had walked out of the Chief Medical Officer's group at the last minute as pacing was included.

These were clearly very biased group of individuals with regard to CBT, graded exercise therapy and pacing.
One might use the term now that research allegiance was an issue, especially given that Peter White was involved in developing graded exercise therapy for CFS and Trudie Chalder was involved in developing CBT for CFS (Lubet, 2017). It has been recognised that research allegiance can influence the results of trials or at least how they are reported.

I was around at that stage and there is no way I would have written such a letter to support these researchers to do such a trial.
 
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Some more background from the period:
Chris Clark had closed down the research fund for Action for ME.
They claimed the money could be better used to lobby for research. They had a 1% campaign, where funding of £35,000,000 per year (1% of the estimated total cost of the illness to the economy per year) was looked for.

This was a pie-in-the-sky figure that they were never going to get. I remember looking at some figures at around the time or a few years later and the highest amount per year was eleven million pounds for breast cancer research. Most got an awful lot less than that e.g. multiple sclerosis got less than one million pounds per year.

Anyway I imagine that Chris Clark felt pressure to be able to say that the MRC was giving significant sums to research because of the strategy to lobby for research.

One of the problems with lobbying for money is that bodies like the Medical Research Council can fund biopsychosocial research while privately funded research on average will be for more desirable studies at the moment.

I'm not saying there's no value in lobbying, but I disagree with any lobbying-only strategy.
 
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Dolphin said:
Some more background from the period:
Chris Clark had closed down the research fund for Action for ME.
They claimed the money could be better used to lobby for research. They had a 1% campaign, where funding of £35,000,000 per year (1% of the estimated total cost of the illness to the economy per year) was looked for.

This was a pie-in-the-sky figure that they were never going to get. I remember looking at some figures at around the time or a few years later and the highest amount per year was eleven million pounds for breast cancer research. Most got an awful lot less than that e.g. multiple sclerosis got less than one million pounds per year.

Anyway I imagine that Chris Clark felt pressure to be able to say that the MRC was giving significant sums to research because of the strategy to lobby for research.

One of the problems with lobbying for money is that bodies like the Medical Research Council can fund biopsychosocial research while privately funded research on average will be for more desirable studies at the moment.

I'm not saying there's no value in lobbying, but I disagree with any lobbying-only strategy.
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Thanks, that's very interesting.

Just to clarify: I don't think it's a particularly damaging letter only insofar as we knew already they had wrongly backed the trial.
 
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