Michael Sharpe skewered by @JohntheJack on Twitter

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.

 

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.

 

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

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  See Simon Wessely's other Tweets

 

http://www.virology.ws/2018/06/18/trial-by-error-sir-simon-scores-an-own-goal/

 

Discussion thread here, https://www.s4me.info/threads/david-tuller-trial-by-error-sir-simon-scores-an-own-goal.4661/

 

https://twitter.com/user/status/1008748615068725248

https://twitter.com/user/status/1008751048041881604


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)?

 

Not answering or even addressing the question is also disrespectful.

 

It's all part of his assertion that he "Wasn't there."

Maybe if he says it enough times, history will correct itself and he will magically disappear.*

*ETA: his wish, not mine, just to be clear

 

I believe there’s something called an unroll or thread unroll Twitter app which might help with organizing threads. I see people using it on Twitter, and it seems easy enough but I don’t have a link or anything.

 

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?

 

Sharpe’s Law:

As an online discussion of PACE trial flaws grows longer, the probability of Michael Sharpe appearing and suggesting that PACE critics should read the paper approaches one.

 

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'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!

 

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?

 

Perfect. But is that Sharpe's Law or the Sharpe Corollary of Godwin's Law? Perhaps the relevant factor is whether a Nazi or Hitler analogy is also present.