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

Graham said:
It looks on the table as though White only sent the information that there were 21 people in the age group 60+ (i.e. 3%), and it looks as if Couch distributed them across the age groups 65-74, 74-84, 85+ to match the Bowling spread. I don't see any other direct information about the ages of the people actually in the trial.
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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".
 
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?
 
Graham said:
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?
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Any use?
http://www.telegraph.co.uk/news/hea...f-ME-with-positive-thinking-and-exercise.html

Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise'

Oxford University has found ME is not actually a chronic illness

By Sarah Knapton, Science Editor

12:01AM GMT 28 Oct 2015
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Attachments

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.
 
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"
 
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/

“CFS does live in a very ambiguous territory, somewhere between medicine and psychiatry,” says Professor Wessely. “And that makes sufferers uncomfortable. I think the reason cancer patients clamour for psychological treatments, and they do, is because they are ‘secure’ in their illness identity. So there is no threat to their status or self-esteem. But CFS sufferers are in a different place.”
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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/

"Study provides evidence that a particular treatment is helpful for a condition; patients are angry because they didn't want that treatment to be helpful; funny old world."
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The main criticism of the trial from patient organizations is that a neurological condition would not get better with psychological treatments such as CBT or GET. Therefore we must have either misreported the results of the trial or included mainly patients with mental illness.
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Why would it matter if CFS were not a neurological condition, at least according to neurologists? It would matter because the implication for many people is that CFS will then be seen as a mental illness. And while a neurological diagnosis is generally regarded as indicating a real illness, and acquiring it is a misfortune that merits sympathy not blame, a mental illness may be perceived very differently; the sufferer may be dismissed as not being really ill and may be assumed to be morally weak, if indeed not directly culpable for getting the condition.
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Graham said:
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.
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A couple from Wessely:

For those who appreciate
these things, the trial is a thing of beauty,
and the results confirm previous smaller
studies and follow ups. We now have two
treatments that we can recommend with
confidence to our patients.

However, the story does not quite end
there. Patient groups rejected the trial out
of hand, and the internet was abuzz with
abuse and allegations. The main reason
for this depressing reaction was the stigma
that attaches to disorders perceived (rightly
or wrongly) to be psychiatric in origin,
whatever that means. If one obtained
identical results to the PACE trial, but this
time with anti-viral drugs, the reaction
would have been totally different. This is
exactly what did happen when a very small
trial of a drug that modulates the immune
system (and which has some nasty side
effects) was greeted with acclaim from the
same sources that tried to discredit the
PACE trial, which tested interventions with
an impeccable safety record.
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http://www.foundation.org.uk/journal/pdf/fst_20_07.pdf

If one reads the angry responses to any article that mentions chronic fatigue syndrome and psychiatry in the same breath, it is clear that the drive to find a somatic biomarker for chronic fatigue syndrome is driven not so much by a dispassionate thirst for knowledge but more by an overwhelming desire to get rid of the psychiatrists. That it is psychiatry that to date has made the most progress in treating chronic fatigue syndrome is at best an irrelevance, and at worst just a further insult.
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2755332/

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

The main criticism of the trial from patient organizations is that a
neurological condition would not get better with ‘psychological’
treatments such as CBT or GET. Therefore we must have either misreported
the results of the trial or included mainly patients with mental
illness.
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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
 
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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)
 
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