Michael Sharpe skewered by @JohntheJack on Twitter

Lucibee said:
This is the main thing I asked about in my letter to RH a few months back - ie, whether it was appropriate for Knoop and Bleijenberg to write the commentary, and whether they had also peer-reviewed the paper.

I didn't really get much of an answer.
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Yes, I remember we discussed all this and your letter now. It all seems more egregious a second time around when we have Sharpe denying such a thing is possible. The minutes on their own are perhaps not so surprising when we have Horton flagellating himself for not marketing the Wakefield paper properly.
 
michael sharpe@profmsharpe
Replying to @sfmnemonic @davidtuller1
Apologies. I wasn't suggesting you were. But sadly David Tuller is paid to trash this research.
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No Mr Sharpe, Tuller is doing what journalists do, you know investigate, collect evidence, put claims to both parties in a debate to give them a chance to comment, dig deeper show scepticism, keep the public informed and all that.....the fourth estate.... ? No?

If the research is trash the job of journalists is to put that infront of people.

The research is trash.
 
I'd like to correct a comment by SW. Although not about the PACE trial for which I have no expertise and is being well and truly skewered by others.

SW said in a tweet copied in this thread:



'Cant answer for DWP. Wasn’t there. But It has a legitimate interest in helping people get back to employment given that the opposite is usually bad for health Sadly PACE didn’t help that. Since then we have learned u need additional occupational support for that. Not just CBT'

This always sounds true on the surface of it. It is indeed almost burned into our collective consciousness. But it's not true. Here I take him to mean paid work as it is discussing the DWP and by inference PIP.

But a paid job is NOT what keeps us humans healthy under normal circumstances and can (and does) in some cases have the opposite effect. What situations do aid in keeping us healthy are enough money (the amount varies and would require a whole other discussion but there is a basic amount involved) doing something we find meaningful with our lives or at least something that we can enjoy part of the time.

There are other things of course but the point is good health is not simply about putting people back to work. Parents who stay home to raise children, independently wealthy people who don't go to a paid job (one could argue here some of the royals maybe?) would all suffer the potential for effects of these on lowering the quality of their health. Even students could fit in this category as it is set out. It of course may not have been meant that way but with this bunch there is this laser like focus on work and it being the ultimate solution for our ills.

I'll refrain from any references that inevitably get made when a conversation goes on this long.


5:49 AM - Jun 10, 2018
 
SW:
Cant answer for DWP. Wasn’t there. But It has a legitimate interest in helping people get back to employment given that the opposite is usually bad for health Sadly PACE didn’t help that. Since then we have learned u need additional occupational support for that. Not just CBT
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The thing that struck me about that tweet, apart from the 'employment is good for your health' nonsense, is his claim that if you add 'occupational support', whatever that is, on top of CBT, you can get people with ME/CFS back to employment.
I haven't seen any evidence supporting that.
 



Wessely seems very anxious to assure us that he was not an author, when, as Keith points out, nobody has suggested he was. I’m not sure if this is, as Keith suggests, a diversionary tactic or whether there may be more too it.

Wessely’s own tweets suggest that he probably should have been an author and he certainly could have been had he wanted to be. So why did he chose not to be? Was it because he realised that the trial could be a disaster? Was it because he wanted to maintain the illusion that he was no longer involved with ME/CFS research? Or would not being listed as an author have enabled him to undertake some other role pertaining to the trial from which an author would be precluded? I have no idea what the answer is to that last question but I’m very interest to know. Any ideas? (@Lucibee)?
 
Trish said:
SW:


The thing that struck me about that tweet, apart from the 'employment is good for your health' nonsense, is his claim that if you add 'occupational support', whatever that is, on top of CBT, you can get people with ME/CFS back to employment.
I haven't seen any evidence supporting that.
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he's thinking about the type of "support" provided by the DWP mental health employment advisers covered in the recent Canary article on this thread https://www.s4me.info/threads/the-c...ried-talks-about-iapt-and-mentions-pace.4600/
 
re Saving Tweets.

If you load the entire Twitter thread you should then be able to save it all as a single PDF document, via the Print function of your browser. Much better than a zillion screen snaps.

Then just update every so often, as required.
 
michael sharpe @profmsharpe

Or perhaps a basis for sensible dialogue about said trial ?
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So what the effing eff do you think the dozens of serious considered letters from patients to the journals pointing out technical flaws were attempting to do with you and your co-authors?

And you guys just blew us off with evasion, misdirection, and insult.

Now you demand a sensible dialogue?

That is some chutzpah you got there, sparky. :grumpy:
 
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Trish said:
Speaking as someone with a pathological fear of snakes that makes me avoid situations where there are likely to be snakes, particularly large ones, even if they are not poisonous, and in a cage. My aversion is so bad, I can't watch snakes on TV - my kids thought it was hilarious having to tell me when I could open my eyes again when watching nature programs. I know it's irrational, but choose not to go to therapy to get over it because I don't live in an area where this fear significantly disables me. If I lived in a situation where that fear was preventing me living a normal life, I would go for the therapy, even though I know I would find it intensely unpleasant.

This is different from my fear of exercise, which is based on my repeated experience that exercise makes me significantly sicker. My fear is therefore entirely rational. It is not based on any specific beliefs about the nature of that sickness, but I see no point in going to therapy because I know that if I removed my fear of exercise I would be worse off.

I'm not sure if that addresses the point you are making...
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No, the argument @Jonathan Edwards was making is the opposite - he's interested in the fact that people actually DID sign up for the PACE study. He thinks this is telling, because the model underlying CBT and GET assumes that patients have an irrational fear of exercise and systematically avoid it. If this were true, he argues, then people would have been unwilling to sign up for the trial at all, because they would be aware that they might be required to exercise. He argued that patients' willingness to participate in the trial demonstrates their fear of exercise can't be all that entrenched.

I was just pointing out that its possible to have a really intense, and deeply entrenched fear of something and still be willing to seek treatment (which may or may not be part of a trial). If it incapacitates you enough. Even when you know that treatment will probably, at some point, involving coming face-to-face with your darkest fear.

So for this reason. I don't find the "willingness to participate" argument very strong.

Of course your fear of exercise is reasonable, but whether or not it is reasonable is not relevant to this particular argument. Does that make sense?
 
MSEsperanza said:
Thank you, @Carolyn Wilshire. It's more precise to say:" anybody who is denying an actually existing, pathological fear of exercise" - At least I think that this is what the BPS approach implies. (Have edited my post accordingly)
What do you think?
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Yes, I suppose you might argue that people with a spider phobia have accepted that their fear is unreasonable and that it is getting in the way of their lives. Whereas the BPS view of CFS is that patients are in denial about their fear of exercise, they don't believe it to be unreasonable and they don't believe that it is fear that is limiting their lives.

So I guess @Jonathan Edwards' point is valid in one sense - if you were completely convinced you had no fear of exercise, just reasonable caution, you would not sign up for PACE.

I still don't know. You might still. Who knows what soft soaping their doctors or therapists have done about what the trial is really investigating?

I just don't think the "well, they signed up, didn't they?" argument is a particularly strong one to counter the BPS narrative.
 
Cheshire said:
One can speak about the nature of "fear of exercice" in "CFS" a long time, but as a matter of fact, this fear does exist only in the wild imagination of the PACE PIs as, according to Trudie herself, they had to prevent participants in the trial from doing too much before starting to increase activity. End of it. They've proven their theory, or hypothesis, or whatever you call it, is completely wrong.
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@Cheshire's argument is much stronger. Also "boom and bust" behaviour is not consistent with a fear model. People who have an intense fear of snakes don't tend to forget their fear for a while, go and spend the entire day in the Zoo's reptile enclosure, then the next day suddenly realise their terror is now much greater then ever!
 
Sean said:
re Saving Tweets.

If you load the entire Twitter thread you should then be able to save it all as a single PDF document, via the Print function of your browser. Much better than a zillion screen snaps.

Then just update every so often, as required.
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Okay... Wonder should I abandon the mission I started last night.... and try this instead? Sounds like a new skill I need to learn. Although with so many sub threads, this may still lose a pertinent tweet by accident?
 
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