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

I ignored the rule in my awe.

 

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.

 

I am quoting myself - but this post of mine has more than 20 likes. They belong to @Graham - have them and all others after this post.

 

Absolutely so, just what I was thinking, really excellent, as are all your productions, just love the Vexatious Patient Production monicker!

Thanks for all your labours.

 

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.

 

Brilliant!

Well done @Graham!

 

great video simple and to the point .unfortunately I scored 0 points for both but then I am a very stubborn person as most of us need to be to survive with this illness .

 

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?

 

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.

 

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

 

That's great. I thought I'd post it on Virology Blog. I'm assuming that's ok?

 

Great explanation! I've never filled in a questionnaire for CFS but I did once for depression. I can't believe anybody takes them very seriously at all - much less as some sort of authoritative quantification of an illness.

 

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.

 

Done, via Countess of Mar, and she sent it on to all Forward ME members too.

 

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.