Video: The PACE trial: a short explanation, Graham McPhee

Thanks Jonathan. Is that iron awe?

If you look more closely at the lighting patterns in the background, you will see them shift as the sun moves in the evening. There's no deep message to that, just the frustration that my iMac couldn't record the whole thing in one take. I did manage a complete, one shot take, right at the start, only to find that the video and sound stopped synchronizing part way through. So I had to run a series of takes, and insert the odd cartoon slide to mask the breaks. I can bodge with the best.
 
Rephrasing it:

If a therapy is believed to treat an illness by changing the patient's illness beliefs, then one cannot base claims of efficacy on self reported health, because the therapy could merely be changing the patient's illness beliefs without having an effect on health.

This is very relevant to many studies conducted with a psychosomatic view of illness.
 
Graham said:
Thanks all for the kind words. It's hard work trying to shear off all the complications and just to focus on the raw essentials in a language that most can follow. I'm glad you think it is working.

I'm hoping that the forthcoming Westminster Hall debate may trigger more interest in the issues. I'm currently part-way through video 2, which is going to cover the "recovery" fiasco. Then in the third I hope to 'encourage' folk to take a more active part in bringing the issues into public notice.

Getting the lighting right so that the viewer isn't dazzled by the reflected glare off the top of my head was a real challenge. I thought of having George on my lap to distract them from it, but he's too old to sit there for long.

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It is really good, Graham. Thanks, and well done.
 
strategist said:
If a therapy is believed to treat an illness by changing the patient's illness beliefs, then one cannot base claims of efficacy on self reported health, because the therapy could merely be changing the patient's illness beliefs without having an effect on health.

This is very relevant to many studies conducted with a psychosomatic view of illness.
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If claims of efficacy were based on self reported health under these circumstances, then over time as therapies are refined and improved, they would be inadvertently optimized for achieving the biggest distortion in self reported health, rather than the biggest improvement in health.

Yes, the branches of medicine and psychology that rely on self reported health are in big trouble and they don't know it yet.
 
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As Jonathan points out, the stuff I covered isn't original. If you go back to the massive thread on the PACE trial on PR, and look at the summary of opinions in the first evaluatingpace pages, so much was discussed by so many gifted folk (including @Esther12 ). I've just been trying to pick out the really basic couple of things that could be understood by most people. I'm always happy to pinch other people's ideas, as Esther and others will readily agree. But then, isn't that what they call teamwork?
 
Graham said:
As Jonathan points out, the stuff I covered isn't original. If you go back to the massive thread on the PACE trial on PR, and look at the summary of opinions in the first evaluatingpace pages, so much was discussed by so many gifted folk (including @Esther12 ). I've just been trying to pick out the really basic couple of things that could be understood by most people. I'm always happy to pinch other people's ideas, as Esther and others will readily agree. But then, isn't that what they call teamwork?
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As a fellow thief of good ideas I can't claim a jot of credit. Depressingly, I think that the problem of bias when using self-report symptom questionnaires to measure the efficacy of a treatment like CBT for CFS was pointed out in a letter responding to the publication of one of the very first trials (around 1994?). 20+ years later and it still has not been properly addressed.

Fingers crossed that work like Graham's will help bring these problems to an even wider audience. The research Establishment don't seem keen to engage with these matters, but maybe when it becomes routine for patients to be raising these concerns in the doctor's office they will be shamed into taking action.
 
strategist said:
Rephrasing it:

If a therapy is believed to treat an illness by changing the patient's illness beliefs, then one cannot base claims of efficacy on self reported health, because the therapy could merely be changing the patient's illness beliefs without having an effect on health.

This is very relevant to many studies conducted with a psychosomatic view of illness.
Click to expand...
Doesn't this mean that the PACE trial demonstrates (I don't use 'proves' since it's impossible to really prove anything much) that illness beliefs are not responsible for the illness. They did change illness beliefs a little but health did not change.

That video is brilliant in it's hard hitting simplicity @Graham
 
Absolutely brilliant @Graham.

For those who haven't seen the data or like me, had forgotten it, here it is from the 2011 PACE paper
https://www.ncbi.nlm.nih.gov/pubmed/21334061
Primary outcomes were fatigue (measured by Chalder fatigue questionnaire score) and physical function (measured by short form-36 subscale score) up to 52 weeks after randomisation...

Compared with SMC alone, mean physical function scores were 7·1 (2·0 to 12·1) points higher for CBT (p = 0·0068) and 9·4 (4·4 to 14·4) points higher for GET (p = 0·0005), but did not differ for APT (3·4 [-1·6 to 8·4] points lower; p=0·18)...
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Screen Shot 2018-06-20 at 1.36.13 PM.png
(Blue APT; Red SMC; Green GET; Purple CBT)

So, on average, and very roughly, participants in the SMC and APT arms moved about one 5 point step up (approx 40 to 45) on this questionnaire while the CBT and GET arms moved approximately three steps up (approx 40 to 55).

That's the equivalent of changing an answer from 'a lot' to 'a little' (or 'a little' to 'no problem') on three questions versus one. As Graham shows, even just a minute of persuasion can change the outcome a lot with questions as vague and irrelevant as these ones. I could go from 30 to 70 (8 steps) on this questionnaire if I am very determined to be positive. That's from moderately disabled to cured according to PACE!

It's interesting to consider why even people in the SMC and APT arms showed, on average, an improvement in scores on the questionnaire. Maybe just being in contact with other people with ME changed the interpretation of what some of the people more mildly affected thought of as 'a lot' of difficulty? For instance, relative to healthy people and myself before becoming ill, I now have a lot of problem getting the groceries. It is the only additional thing I normally do on a Thursday and I have a lie down afterwards. However, relative to others on Trish's SF-36 Physical Questionnaire thread, I really only have a little bit of a problem - I can still drive, and carry the bags in from the car.

Maybe we need a study on this variability in SF-36 scores due to priming. Wouldn't it be nice if that infamous 'Shopping Bag Study' was actually aiming to show what a load of subjective rubbish the SF-36 really is. :)
 
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Hutan said:
It's interesting to consider why even people in the SMC and APT arms showed, on average, an improvement in scores on the questionnaire.
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I think we forget that all patients had 4 or 5 sessions with a specialist, and we underestimate that effect. My experience is that most people just see the specialist for 20 minutes or so, get told they have CFS, and are passed on to the therapists. Even so, the relief of having a proper diagnosis after 3 years of worry must have a significant effect (3 years was the average wait for the PACE participants).

But in the PACE trial, the specialist also dealt with pain management and relief, sleep problems and depression if appropriate. Now having some stronger painkillers at night gave me a better night's sleep, with a knock on positive effect on my symptoms. So perhaps that was a factor in all the groups improving. The specialist also explained "boom and bust".

Finally, the first time the patients arrive at the centres and are given tests, they have already navigated strange routes and dealt with unknown people. By the time of their last assessment, they are used to the journey and the people, so it has less of a bad effect on them.

Really, they should have been tested at the start when everything was being set up, then again before having 4 or 5 sessions with the therapist, then again at the end. This last one should have been the baseline. If they then had the dozen or so sessions of CBT, GET, scaredy-pants pacing, or total neglect, followed by another test, that would have separated the two aspects of the treatment.
 
The fault wouldn't lie with Graham's video at all but there are people too ignorant or stupid or worse to understand it. At least one of those people would probably ask if Graham has read the paper. There's no hope for some people. Meanwhile the video's reach is growing - excellent - and we had another opportunity to see a photo of George - he's lovely.
 
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