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

Yes, I agree. I'm sure that there was an unusually old person included in the trial though, and my infallible notes say that they were 77 at randomisation. I'm really sorry that I can't find any public record for this info though - I can't now see any mention of the upper/lower ages of PACE participants. The PACE participants were still, on average, younger than the working-age Omnibus Survey sample used in Bowling, so this older participant doesn't really matter for the broad point being made, but it's still nice to try to get all the little details right too.

 

When it comes to checking facts, there are different levels of veracity. "Everyone knows" is probably at the bottom:" it's on the internet" is only a step above: "it was published in The Lancet" might be a bit above that ... and at the absolute summit of reliability is "Esther says".

 

Is that a variant of "Simon says"?

 

Finally got round to watching this @Graham. Really is very good. Love the way it gives real insight into how PACE was simply a dressed up exercise in how to influence the filling in of questionnaires, and in turn dressing that up to give the impression of real improvement when there was none.

I think it will prove invaluable in some of our advocacy endeavours.

 

Well, like winter, my third video in the series has taken a long time coming, and may not prove to be to welcome, but tough!

I'm now titivating it up with quotes etc., and am looking for a fairly recent headline from a common UK newspaper suggesting that exercise is a good way to beat ME. Anyone have a suitable quote at hand, please?

 

Any use?
http://www.telegraph.co.uk/news/hea...f-ME-with-positive-thinking-and-exercise.html

 

Got ME? Fatigued patients who go out and exercise have best hope of recovery, finds study (2011)
https://www.dailymail.co.uk/health/...-exercise-best-hope-recovery-finds-study.html

ME can be beaten by taking more exercise and positive thinking, landmark study claims (2015):
https://www.dailymail.co.uk/health/...fessor-claims-sufferers-not-push-recover.html

Got ME? Just get out and exercise say scientists (2011):
https://www.independent.co.uk/life-...-out-and-exercise-say-scientists-2218377.html

NB the title appears to have been removed from the Independent article but it remains in the URL.

 

Big list of PACE Trial coverage from 2011 somebody sent me in 2015

 

From @Dolphin's list, the following jump out as prime examples of unhelpful researchers' beliefs:-

"Psychotherapy And Exercise Look Best To Treat Chronic Fatigue Syndrome"
"Pushing limits can help chronic fatigue patients"
"Study finds therapy and exercise best for ME"
"Psychotherapy And Exercise Look Best To Treat Chronic Fatigue Syndrome"
"For Chronic Fatigue Syndrome, Rest May Not Be Best"
"Got ME? Fatigued patients who go out and exercise have best hope of recovery, finds study"
"Exercise and therapy can reverse effects of ME"
"Chronic Fatigue Syndrome: Slowing Down Not the Answer"

 

Indeed. Pretty much what PACE did.

 

Thanks all. I'm only after a recent bad example to show as a background slide, so the Telegraph one is fine.

Now for the next challenge. Again, only if you have it to hand, do you have any quotes from Sharpe, White, Wessely that we "opponents of PACE" are against any suggestion of mental illness: that we are prejudiced against it? I'm stating at the start that I have no such prejudice, but, being a scientist, base my judgement on evidence, so I'd like to put a short quote (and it has to be short) in the background suggesting that we are simply against any suggestion that ME could be psychological, not because of the evidence, but because of our prejudice.

I've also mentioned that the CBT approach started in the eighties with a small group of psychiatrists. I did think about pasting up a list of the key players at that time, but I'm not sure. (Wessely, Sharpe, White, any more? Those are the three that Hooper mentions)

 

I ought to explain that, unless I can come up with quotes and bits to "pin" on the back wall, the video is just a talking head, and as the head is mine, it's not exactly the most entrancing and irresistible viewing. So if I can distract viewers by posting the odd quote etc. on the wall, it would help.

 

I thought this article might yield some usable quotes, but then, maybe not: https://www.meassociation.org.uk/20...fessor-simon-wessely-the-times-6-august-2011/

 

"He discovered that by combining cognitive behavioural therapy and light exercise a third of patients make a full recovery."

Great work Simon. Why would patients be annoyed with him for that?

 

There is plenty of relevant material in the chapter "Chronic Fatigue and the fear of mental illness" in the Wessely, Sharpe, Hotopf book but the difficulty is in finding something sufficiently succinct for the purpose, without using it in such a way as to leave oneself open to the criticism of having taken it out of context. I shall keep looking.

ETA the book even contains graphics which might be regarded as a trial run for the notorious Sunday Times effort.

 

And this thread about an article by Sharpe: https://forums.phoenixrising.me/ind...e-neurological-mental-or-both-incl-pace.9903/

 

A couple from Wessely:

http://www.foundation.org.uk/journal/pdf/fst_20_07.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2755332/

From Sharpe [edit: @Lucibee posted this just before me]:

https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1104D&L=CO-CURE&P=R1662&I=-3

This Sharpe paper could also be of interest, although I remember any great quotes from it:

"Psychiatric diagnosis and chronic fatigue syndrome:
Controversies and conflicts"

https://web.archive.org/web/2007102...cab.org/cfs-inform/Cfsdepression/sharpe05.pdf

 

I rather like this, but cannot see how it could be used:

Most sufferers from chronic fatigue believe, whether rightly or wrongly, that the explanation for their ill-health lies in the particulars of their psychological and social lives. However, for some (I think they may mean us) this is unacceptable.

Underneath the ME/CFIDs movement is a strong and passionate antipsychiatry rhetoric. This has not arisen as a result of interest shown by psychiatrists in the topic (few have much knowledge of, or contact with sufferers). (One could almost wonder whether they have heard of McEvedy and Beard and are aware of patients reaction to them)