When Sharpe wrote "the data is sound even if the results are relatively modest.” it sounds like he is referring to the reanalysis results. If so he is acknowledging that the original ones were false. Someone should ask him which results were modest and see what he says
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Michael Sharpe skewered by @JohntheJack on Twitter
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Carolyn Wilshire
Senior Member (Voting Rights)
I don't know any statistics, but I read a lot of studies of FND when writing the psychogenic illness paper with Tony Ward, and "resistance to a psychological explanation" is apparently a widespread "problem" in all these illnesses, its mentioned everywhere. A lot of papers focus entirely on how to manage the patient so as to conceal the psychological nature of the diagnosis.
Here's an example:
Illness beliefs and locus of control
A comparison of patients with pseudoseizures and epilepsy
Jon Stone, Michael Binzer, Michael Sharpe
https://www.jpsychores.com/article/S0022-3999(04)00520-3/abstract
Hoopoe
Senior Member (Voting Rights)
Their ability to believe in a hypothesis that doesn't fit with the data they're collecting is astonishing.
I agree with you about @Cheshire 's argument.
Also agree that boom and bust is completely at odds with fear avoidance.
But just to say also, the "boom and bust" model also only exists in the wild imagination of the PACE PIs minds.
There is no Boom, just the bust after any over exertion.
Thank you for that. I have often wondered why pwME are so vehemently opposed to the 'boom and bust' idea. I thought it fitted well with my experience of years of pushing over my limits and crashing.
But of course there was no 'boom' in the healthy person sense - I wasn't running marathons or scaling mountains. I was actually doing a lot less than I could do when I was healthy. I was repeatedly pushing past my limited energy envelope and crashing. So 'push / crash' cycles would be a better description.
And I agree that this is a complete contradiction of fear avoidance.
adambeyoncelowe
Senior Member (Voting Rights)
But also, it's very political language. It implies that we're being profligate, careless and over-excitable. We're like those damn socialists in government spending all the taxpayers' money and causing the financial crisis (rather than, you know, the bankers and their ilk).
It implies we're suffering as a result of our own poorly judged behaviour, rather than because we have an illness that punishes us for living our lives. It implies we should be happy with nothing, with doing nothing (but exercise and work, of course!), with only what they tell us we're allowed to do.
'Boom and bust' is the language of blame (at least to me).
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Another batch of screen captures (thanks to @Keela Too )
https://www.s4me.info/docs/SharpeTweets4.pdf
https://www.s4me.info/docs/SharpeTweets5.pdf
https://www.s4me.info/docs/SharpeTweets6.pdf
https://www.s4me.info/docs/SharpeTweets7.pdf
Daisymay
Senior Member (Voting Rights)
They've also said over the years that PWME are couch potatoes and at other times they come out with A type personalities.
Jonathan Edwards
Senior Member (Voting Rights)
I think Trish is right, for the reasons I posted. Phobic fears, where the person readily understands that the phobia is ungrounded in harm are quite different from fears or concerns about things where they have reason to think their is a grounding in harm.
I agree that if the PACE authors' theory assumed that fear of exercise was a phobic fear then the spider analogy would hold. And they are probably dumb enough to have argued that to themselves. But they, as much as anyone else, are perfectly aware that the concern about doing exercise expressed by PWME is not at all like a phobia, whether it is based on personal experience or on hearsay from the internet. In both cases there is grounding in a genuine belief that there will be payback, beyond just going hot and sweaty.
Lucibee
Senior Member (Voting Rights)
I think he's just trying to stir up conspiracy theories tbh. My guess would be that he simply didn't have time to be involved at any significant level, so he was happy to stay in the background and pull strings, oil the tracks, that sort of thing.
Daisymay
Senior Member (Voting Rights)
Yes that's a better term, and I think we need to maybe try and take control of the language which they have used to their advantage to promote their view and not of our experience.
Fear avoidance is definitely not a good term, it's their term to fit their view, it's not fear. How about rational exercise avoidance, rather a mouthful, maybe someone can think of a better one.
Jonathan Edwards
Senior Member (Voting Rights)
I think there may be two different arguments that may get conflated.
The important one for me is this.
Because people recruited for PACE knew they might have to do GET the cohort cannot be taken as representative because people who knew that exercise made them worse (or had heard so) would be likely not to have volunteered. The risk/benefit analysis for GET would then be skewed to inappropriately positive. This means that the results cannot be extrapolated even to an Oxford defined population. Using Oxford would have been valid to a first approximation if applied to patients fitting Oxford if there was no recruitment bias of this sort but since it is more likely than not that there was bias then the problem with the recruitment is not the criteria used but the built in bias.
The more philosophical argument is that the BPS people appear to be setting up a trial that will not recruit people who fit the theoretical justification for CBT they claim to be basing their approach on. If the claim is that you need CBT with its mysterious 'cognitive strategies' to deal with a phobic fear of exercise then that's OK. But nobody actually thinks this is a phobia in that sense, I suspect. moreover, the rationale draws on stuff by Richard Edwards that says that when unfit people exercise they do actually feel awful. But the more one looks the more it is clear that none of this was really thought through.
The important one for me is this.
Because people recruited for PACE knew they might have to do GET the cohort cannot be taken as representative because people who knew that exercise made them worse (or had heard so) would be likely not to have volunteered. The risk/benefit analysis for GET would then be skewed to inappropriately positive. This means that the results cannot be extrapolated even to an Oxford defined population. Using Oxford would have been valid to a first approximation if applied to patients fitting Oxford if there was no recruitment bias of this sort but since it is more likely than not that there was bias then the problem with the recruitment is not the criteria used but the built in bias.
The more philosophical argument is that the BPS people appear to be setting up a trial that will not recruit people who fit the theoretical justification for CBT they claim to be basing their approach on. If the claim is that you need CBT with its mysterious 'cognitive strategies' to deal with a phobic fear of exercise then that's OK. But nobody actually thinks this is a phobia in that sense, I suspect. moreover, the rationale draws on stuff by Richard Edwards that says that when unfit people exercise they do actually feel awful. But the more one looks the more it is clear that none of this was really thought through.
Carolyn Wilshire
Senior Member (Voting Rights)
Yes, that's true. Its not fear in the sense of a classically conditioned response (phobia). Its more like avoidant behaviour, where the basis for the avoidance is seen by others as spurious. I suppose a better analogy would be refusing to travel by plane because a fortune teller told you you would one day die in a plane crash (like David Bowie). You're not interested in partaking in therapy for this type of avoidant behaviour, because you don't see it as problematic - you believe you have good reason to be avoidant. But everyone else around you thinks you're a bit nuts.
But by even discussing this difference, we're being way more sophisticated that these PACE researchers ever got. This type of avoidance has nothing to do with fear, and will not respond to graded exposure therapy.
Hoopoe
Senior Member (Voting Rights)
Yes, but that patients are harmed by GET tells us that even the patients that are harmed by GET are initially willing to believe that GET could help (or would at least not harm them).
Illness severity will influence how aware patients are of the connection between activity and subsequent deterioration. In severe patients this is much more obvious and so painful it cannot be ignored. In the less severely ill things aren't so obvious.
Jonathan Edwards
Senior Member (Voting Rights)
This I think is the nub. A misconstruance of Richard Edwards's work on training muscle and a false analogy with exposure therapy.
TiredSam
Committee Member
There's nothing inconsistent in that. Here is a typical German ME sufferer before behavioural intervention:
If we have a fear, it is a fear of exceeding the amount of activity we can do before suffering PEM. We don't fear exercise as such, just too much exercise (or activity). People with this fear, of exceeding their safe threshold of activity, could easily be recruited to do GET. All the researchers need say is 'we will start you off at a low safe level of activity and then, because we have superior knowledge, we will be able to help you push that safe threshold up'.
I know this is true because after the first horrendous year of my illness, when I was getting better but already knew that too much activity was a problem, I signed up for pilates classes, me and an instructor twice a week to gradually work on 'getting me fit again'. (It didn't work of course. The instructors periodically took measurements of my strength, hoping to show great gains, but I just got worse.)
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