Michael Sharpe skewered by @JohntheJack on Twitter

[Jonathan Edwards]

I think I understand most of the reasons why the differences in responses do not provide reliable evidence of the effectiveness of CBT and GET but I would be interested to hear how others would answer this question, in particular @Jonathan Edwards.

The man is talking as if he understands nothing. There is nothing matched about two treatments that encourage people to think they are getting better and two protocols that encourage people to think they are going to stay the same. CBT and GET are deliberate placebos. The weird thing is that the deliberate placebo is normally the dummy in a trial. Here it is the treatment under test. The controls are anti-placebos. Doesn't he get that?

 

[Jonathan Edwards]

'Well. You are not going to be convinced I can see. Odd that folk want a trial to be retracted because they don't believe/like the results.'

It seems extraordinary tome that Sharpe does not seem to understand that things have moved on in the last couple of years. Scores of senior academics with no interest in ME and no reason to like or dislike results or to believe them or not have pointed out that the trial is just rubbish. We believe they got the results but they are transparently meaningless.

And his protestations simply confirm to us all that he does not get it - he does not get scientific methodology.

 

[Indigophoton]

For sure. He's still absolutely wedded to the conviction that it was a good trial, and it's just a few people being partisan and emotional that is the problem:

It seems extraordinary tome that Sharpe does not seem to understand that things have moved on in the last couple of years. Scores of senior academics..

He knows, he just dismisses the majority of the academics as unqualified to judge, and biased - full (start) of thread for context, not that it makes any difference -




I was quite astonished by that remark.

Eta: quote.

 

[Esther12]

That David Jameson account comes out with some stuff.



PACE did look at employment as an outcome, and found no significant difference between groups:

"There was no clear difference between treatments in terms of lost employment."

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808

 

[Lucibee]

Thanks @Esther12 - I've quoted the quote at them.

Who is David Jameson?

[Aha - https://www.bmj.com/rapid-response/2011/10/30/dont-ignore-facts
Mr Persistent Burnout Theory - http://www.mind-body-health.net/persistent_burnout_theory_2004.html]

Is MS aware he thinks that CBT is merely a placebo?

 

[Barry]

Both assume the possibility that associated biological processes may be at least partially reversible

OK, just suppose a PwME also has an element of deconditioning, because they are too ill to do much. So when MS says "the possibility that associated biological processes may be at least partially reversible", let's say he is talking about the deconditioning component of this person's biological issues. Well the reason the person has this deconditioning component, is because their body is too physically ill to recondition, thanks to the ME component of their condition. So to recondition, this person must push themselves very possibly beyond the safe limits of the ME component of their illness. PACE, and the medical doctrine that it has since fostered, pursued this very risky strategy without any real acceptance their could be a non-deconditioning-related physical component as the primary cause of their illness.

 

[Barry]

Regardless of whether or not it is worth engaging with Prof Sharpe on Twitter, I think his second question is important, as it is one that many may ask and some may struggle to answer satisfactory:


I think I understand most of the reasons why the differences in responses do not provide reliable evidence of the effectiveness of CBT and GET but I would be interested to hear how others would answer this question, in particular @Jonathan Edwards.

Surely it is mostly down to being open label with subjective self reported outcomes, compounded by what amounted to selectively applied propaganda.

 

[Barry]

Reports like this are so important to collect - but is there any way to directly link them with the PACE trial? Documentation? Patient ID numbers? It needs to be done systematically. Ideally one would want to collect both good and bad testimony; but given they have claimed that no-one was harmed, not sure that is strictly required any more.

There was a commenter responding to one of @dave30th's blogs (I think), who said they were in the GET arm of PACE, and when their heart rate went through the roof the staff tried to dismiss it as a faulty monitor because that result was not possible. Apparently annoyed when participant would not let them ignore it. As best I remember.

 

[Barry]

Actually it hasn't. That has been alleged by those who don't like the findings.

As usual, a characteristic partial truth from MS, strongly implying an untruth. True: we reject the findings. Omission: the reason we reject the findings is because the science is dog poo. Implied untruth: we don't like the findings because we are biased.

 

[large donner]

michael sharpe@profmsharpeBut. First what do you mean by placebo? Second the PACE Trial compared 3 time and credibility matched interventions and got a differential response. Why ?

Doctor: "You are mentally ill and you're thinking can be corrected by us the best cure is CBT".

Patient thinks to themselves: I don't think thats true, oh boy I am in danger of being controlled by the state.

Six months later:

Doctor: "Are you still mentally ill".

Patient: "No Doctor"

Didn't they do this kind of thing in the Soviet Union?

 

[large donner]

michael sharpe@profmsharpe Well a subset of scientists, mostly not experts in trials, at least some of who have pretty strong feelings about the findings. How many trial experts do you think find it a good trial - not perfect but good?

This is such a flawed notion really. Science is not done by consensus its done by adherence to the scientific method. How does one describe an expert? Is it by quantity or quality of trials etc.

Its not about how many allies one has or how many mates they can get to give them a character reference.

The scientific method and the adherence to it is taught from 11 years of age for a reason.

The funny thing is Sharpe seems to be a lone wolf in this current issue, surely its up to him to bring forward this mass of experts who find it to be a good trial. He is the one currently making the claim they exist.

They seem deadly silent at the moment!

 

[Jonathan Edwards]

'Well a subset of scientists, mostly not experts in trials, at least some of who have pretty strong feelings about the findings. How many trial experts do you think find it a good trial - not perfect but good? '

I think having devised and executed many trials including one where I did both published in NEJM I can consider myself an expert on trials (with absolutely no feelings about the findings, just the way they were obtained). But you do not actually have to be an expert on trials to see that PACE is rubbish - just a bog standard junior registrar who listens at journal club.

I don't know of any disinterested experts on trials who think PACE is competent.

 

[Allele]

Its not about how many allies one has or how many mates they can get to give them a character reference.

Yes, but this is how it has been for him/BPS.
Until now.

 

[alex3619]

Science is not done by consensus its done by adherence to the scientific method.

Agreed. Consensus is a managerial or political process. Its for when you do not have adequate evidence but must act. Its subject to far too much bias and manipulation. When you see a consensus process you are not seeing just science, but it can be scientific managerial, or scientific political. Its similar for medicine.

Sadly this means that our consensus definitions are about managing the situation in the absence of good science. This should make government grants trying to define and diagnose a high priority. As we have seen, over decades, this has not been the case, and while we hope its changing now we can only say that for sure in retrospect, after it has or has not changed.

NICE for example is a managerial process for medicine, and it draws on science, but its not a scientific process. It can also be argued that evidence based medicine is too often not evidence based scientific medicine, but evidence based managerial medicine. It does not have to be this way but often is.

Don't get me wrong, we need both managerial and political processes, but we must not forget they are not just science, but a hybrid application of science, and subject to even more biases.

 

[alex3619]

But you do not actually have to be an expert on trials to see that PACE is rubbish - just a bog standard junior registrar who listens at journal club.

A year one tertiary science student who pays attention and actually reads assigned reading might be able to do it.

 

[BruceInOz]

Well a subset of scientists, mostly not experts in trials, at least some of who have pretty strong feelings about the findings. How many trial experts do you think find it a good trial - not perfect but good?

So Appeal to Authority is now good scientific reasoning rather than well established logical fallacy?

One of the great commandments of science is, "Mistrust arguments from authority." - Carl Sagan

 

[Alvin]

Is someone able to reply to this

For sure. He's still absolutely wedded to the conviction that it was a good trial, and it's just a few people being partisan and emotional that is the problem:

by reposting this?

'Well a subset of scientists, mostly not experts in trials, at least some of who have pretty strong feelings about the findings. How many trial experts do you think find it a good trial - not perfect but good? '

I think having devised and executed many trials including one where I did both published in NEJM I can consider myself an expert on trials (with absolutely no feelings about the findings, just the way they were obtained). But you do not actually have to be an expert on trials to see that PACE is rubbish - just a bog standard junior registrar who listens at journal club.

I don't know of any disinterested experts on trials who think PACE is competent.

 

[Sean]

They are basically training pts to lie about their experience.

That is exactly what they did.

They place patients in a particularly nasty double-bind, where the patient cannot safely give answers that are both true and acceptable. It is astounding that they have got away with it for so long, and speaks volumes about just how poor can be the oversight of medical trials.

I became aware of a PACE participant in the middle of the trial who I think was doing GET. They were saying that they complained they were getting worse and then the person interviewing them wrote down they were doing fine or something. The implication was that their symptoms were being treated as psychosomatic and so not even recorded! This is unscientific.

It is worse than that. It is straight fraud and cowardice. There are absolutely no excuses for this appalling shite.

'Well. You are not going to be convinced I can see. Odd that folk want a trial to be retracted because they don't believe/like the results.'

It seems extraordinary to me that Sharpe does not seem to understand that things have moved on in the last couple of years. Scores of senior academics with no interest in ME and no reason to like or dislike results or to believe them or not have pointed out that the trial is just rubbish. We believe they got the results but they are transparently meaningless.

And his protestations simply confirm to us all that he does not get it - he does not get scientific methodology.

I am of the view that Sharpe is not a complete fool, and that he understands at least some of the serious problems with PACE. He just can't admit them without the whole house of cards – his reputation, career, empire, and income – collapsing around him.

Who is David Jameson?

I think he is 'sciencewatcher' on Wikipedia, who has done serious harm to us via his pernicious sustained influence on the CFS article.

 

[Hoopoe]

Assuming there is a plan and goal behind Sharpe's activity on twitter, it's probably related to this (it's today by the way)

 

[Daisymay]

I am of the view that Sharpe is not a complete fool, and that he understands at least some of the serious problems with PACE. He just can't admit them without the whole house of cards – his reputation, career, empire, and income – collapsing around him.

Agree completely, MS and all the main players know exactly what they are doing.