Michael Sharpe skewered by @JohntheJack on Twitter

I imagine he is trying hard to save face with those who know him - or at least think they know him.

 

I think it is a very positive sign. He was always able to ignore those unable to stand up to him, so why would he have bothered (from his perspective) to waste his time with people too weak to affect him? The very fact he is responding, means he probably feels he can no longer ignore us.

 

I think that's right. Per Wessely, ME is the condition of believing you have ME. Sharpe, at least, clearly still thinks that.

Which makes it curious that he accepts that there are biological elements: apparently patients are mentally capable of altering their biology, yet that ability didn't show up in the trial results to any meaningful degree. So even if he was right about ME, the conclusion then would be that CBT and GET are useless methods for influencing physiology.

Any way you slice it, his position is full of holes.

 

https://twitter.com/user/status/985438466103300096


Sharpe is trying to absolve himself of further responsibility here, however he and his fellow authors should also be held to account for their conduct after the trial was released.

They not only heavily promoted the trial, but they also were quoted in the press claiming positive results which were so overblown that they were unsupported by the (already questionable and exaggerated) claims made in the PACE trial itself.

They (and their mates in the media) were claiming that CBT and GET were 'cures' for ME/CFS. And they would well know that populist governments these days will, in response to such hype, promise 'CBT/GET for all'.

[edit: last para added]

 

They know full well what they're doing, what they've been doing all these years.

Genuine researchers who held their view that ME is a behavioural disorder, but who had the care and safety of patients at heart and the pursuit of science as their basis, would have looked objectively at the evidence over the years, accepted and admitted their view was wrong and done so years ago.

To still maintain their view is valid and to still maintain PACE is a thing of beauty and a valid trial says it all. There is no excuse.

 

As a slight aside... I'm currently going through some of White's publications from 20 years ago that @Tom Kindlon cited in his Protocol comments. (Thanks Tom!).

It seems clear this is an example of sunk cost phenomenon. The PACE PIs have invested their careers in this, and can't admit now that they were mistook, so everything has to be explained in increasingly bizarre terms in order to shore up their position.

This paper in particular struck me:
White P. Commentary. Adv Psychiatr Treat 2002; 8:363-365. (September 2002) [pdf]

White's reasoning seems entirely based on premise that because there are no "physical" treatments for CFS, it must therefore be a biopsychosocial disease (whatever that is). But he's not saying it's psychological (oh no), because physical treatments like antidepressants work in psychological conditions. He seems to have got himself into a complete epistemological muddle.

You cannot use logical arguments to explain complex multisystem diseases!

 

His conclusion is thus though @Trish :

 

Personally, I'd prefer people just tweet great stuff like the patient testimonials above and let it rest on its power, without snarking at MS or anyone else. That turns it into bait for him to provide canned testimonials, as well as being rather like saying "Nyah Nyah" and wagging ears at him. I think we ought to keep it as professional and factual as possible for the sake of the cause as a whole. I don't mean to pick nits, and so glad people are engaging publicly on this topic.

And on another note, him saying "The results are what they are" is the most disingenuous, slithery thing I have ever read. Can he even hear himself?
As if he hadn't noticed those sham "results" hadn't become policy. The astroturfing! So much astroturfing!

 

Like Hillary Clinton did? Ignoring people while they are defaming us wont make them go away, it just lets him turn people against us since his words go unchallenged. I agree with no name calling or anything like that but challenging people peddling alternative facts is part of the strategy to defeat them.

 

So we totally agree, Alvin; and I in no way advocated ignoring people, just to be very clear. I stated outright that I am glad people are engaging, and their arguments can stand on their own power without giving anyone the V sign.

I hope the public correction of the record continues, and as you say we don't need name calling or fun-poking in a public platform (not that that is what AdamPwME was doing.)

 

My mistake i thought you were saying we should not engage him

 

Besides presenting that clever soundbite of doublespeak (....To regard CFS as a physical disease would be as great an error as to regard it as a psychological illness",) he also speaks as if there is any proof anywhere that "somatoform" diseases exist at all. The whole argument then rests on the premise that that imaginary-imaginary diseases are a real concept.

The only reason he can speak this way is because academics, educational institutions, clinicians, and laypeople have been willing to adopt the idea that they are without proof, or even question.

This needs to be challenged at that base of a level.

 

I know it's off topic but I can't resist posting this to show what we're up against.

"In his paper, Dr Shorter did not mention the religious dimension. If the proposition is acceptable that the language you have determines the way you think,we are now in a period of transition from a religious language to a late 20th century scientific or pseudoscientific language in which the psychiatric component becomes a substantial part of the language in which people interpret their own symptoms. And I wonder whether if one looks at the OT book of Job...or the Lamentation of Jeremiah...or the NT miracle story in which a man picked up his bed and walked...we are perhaps reading of a similar condition which has been with us since antiquity and is thus an expression of the human condition. We have traded one language for another. The problem we are faced with asphysicians is that our patients have only one language, the language of medicine. With the loss of the authoritative influence of the church on peoples beliefs, there has been a loss of the vocabulary of feelings about many aspects of life which were previously explained in religious terms, including reassurance,relief or "salvation" where there has been a major positive change in thought. We shouldn't always assume that we are dealing only with a medical problem when we consider chronic fatigue; we are dealing with something which is the human condition, for which other explanations were formerly possible; we now have to offer scientifically legitimate explanations, if possible without the need to treat with drugs."

My eyes have been opened to my limitations in not having previously seen the illness in such terms.

That was Edwards R at the Ciba conference in 1992 attended by Sharpe. Sharpe did not contribute to this debate but it is indicative of the terms in which the illness was being discussed, and no one thought it odd.

Edit the reference for the quoted passage is
Chronic fatigue and chronic fatigue syndrome: clinical epidemiology and aetiological classification. Manu, Lane and Matthews.

1993 Chronic fatigue syndrome. Wiley, Chichester (Ciba Foundation Symposium 173) p23-42

And appears on the discussion section at p40.

 

What a load of utter bollocks. And people like Shorter are the type of people who determine the quality of life of hundreds of thousands or even millions of people around the globe.

Admin - please delete if necessary.

 

Can I just say that @Tom Kindlon is an absolute legend?

I'm slowly working through his comments, and they are just so well researched and referenced, it's going to make things so much easier.

And I wouldn't have even started on this without @JohnTheJack 's tenacity with the FOI requests.

You guys are just amazeballs!

 

I second that bollocks ...it’s always good to have two