Michael Sharpe skewered by @JohntheJack on Twitter

[Allele]

What I find strange is that Dr Sharpe seems not to understand very basic concepts like conflict of interest.

Oh, he understands. He is doing what is called "astroturfing" to try to sway public opinion and outrage.
"Militant patients pay journalist to spread propaganda."
See how they argue and mock. See how unreasonable they are. See how persecuted we noble academics are. Etc.
He knows what he is doing every step of the way, and he is fighting for his (unravelling) reputation, as anyone would.

 

[Allele]

To me, the name 'PACE Trial' has always seemed aggressive

And this is a blatant case of "dogwhistling". Appropriating a word and giving it a completely different meaning to cause confusion/discredit/deflect from your underlying agenda.

The BPS crew are masters of this:

"Functional" used to have its real meaning: there is a disruption/anomaly in the function of a system or organ whose cause is not known.
Now rebranded to mean imaginary.

"Central sensitization" used to refer to a heightened response from the CNS. Rebranded to imaginary.

"Somatic", meaning of the body, and the first one to be phase-shifted by them I believe, got the prefix "psycho-", so that eventually the word itself, which most laypeople only ever hear in the context of "psychosomatic", mistake it for the new term (in the way that many people think "explicit" means "sexually explicit" bc they've only heard it in that context.)

I don't need to list them all as everyone here is aware of the growing "lexicon" as they continue to add new terms to annex diseases. MUS is so ridiculous I can't even believe the world isn't laughing in their faces.

 

[Alvin]

My feeling here is that the conflict is not so innocent.

His idea is to divide and conquer, if he can make us look bad he will.

I have a hard time understanding this notion of vexatious comments, and why anyone would give significance anonymous posts on the Internet short of credible threats of death or rape. It’s the Internet, which brings out all manner of people saying outragous things.

If someone commits a crime and has the only evidence locked up in their safe and can use the cover of threats to keep it from being subpoenaed then its in their interest to do so. Its not ethical but if they are willing to doctor their results then they are already of questionable ethics.
That said i don't think threats even in "jest" are a good idea, you can't really separate the blowing off steam ones from the legitimate threats

 

[Hoopoe]

Essentially the position they appear to be trying to take is that bad trial design is OK because patients are upset and call them names on Twitter.

Nevermind that maybe patients are upset because of bad trial design and refusal to acknowledge the problems.

Yes PACE was just a trial, but outcome switching and hiding data with questionable excuses does look like an attempt to suppress the truth. Rather hard to explain that with mere incompetence.

 

[Allele]

Even "just a trial" is an after-the-fact obfuscation. Why then did "just a trial" so heavily influence treatment protocols worldwide? Why did "just a trial"
receive so many press releases and articles, all without the qualifier that this was "just a trial"? Why have all the trials related to PACE been so incredibly poorly designed and misrepresented?

So much line-blurring with these people!

 

[NelliePledge]

View attachment 2654

hey indeed; don't know about the other fella (origo)

You’re on fire today @Sly Saint challenging @Graham for forum wit

 

[Sly Saint]

You’re on fire today @Sly Saint challenging @Graham for forum wit

sadly it will probably be all a blur tomorrow

 

[Indigophoton]

I find this quite odd. Apparently it makes sense to believe what patients said during the trial, but to dismiss what they say otherwise, even when published in peer-reviewed journals.

 

[Daisymay]

I find this quite odd. Apparently it makes sense to believe what patients said during the trial, but to dismiss what they say otherwise, even when published in peer-reviewed journals.

Yes, and ME/CFS patients at the start of the trial are not to be believed as they by definition have wrong illness beliefs, but following CBT/GET miraculously their perceptions are to be believed, well at least those who say they are better on subjective testing.But presumably those who fail to improve must still have wrong beliefs and so can't be believed.

 

[large donner]

Also can he show us a dubious biological study that has formed healthcare, treatment and disability benefit policy for the last 3 decades?

He probably could but thats not the point, he can't defend PACE on the merits since there is none so now he can only try to convince the gullible and hope here are enough to keep science at bay.

I really doubt he can show us a dubious biological study on ME that has shaped healthcare, treatment and disability benefit policy for the last 3 decades? Which one has lead to the NICE guidelines etc?

 

[large donner]

He has illustrated this perfectly by showing that he doesn't understand the conflict of interests between his foot and his mouth on twitter.

He's probably putting his foot in his mouth to sooth his own gunshot wound.

 

[Barry]

A CONFLICT of interest is when obtaining money for services might be expected to lead to biasing some other activity that you undertake, like research.

That is a very good clarification. It means that we are really talking about interests, plural, when considering their conflicting. So if the billed interest is the one being paid for, no conflict.

What I find strange is that Dr Sharpe seems not to understand very basic concepts like conflict of interest. There is no conflict of interest in raising money to be able to put a point of view if you openly indicate that you are raising money to put that point of view.

I think he must understand, but perhaps seeks to muddy the waters, providing flawed but superficially convincing arguments for those unclear about such issues. Seems to be a stock in trade. When under pressure about his own COI, he goes for a diversion (for that's what it is) by drawing a false parallel with @dave30th. When you consider the mindset behind it, it's no wonder PACE ended up the way it did.

 

[large donner]

michael sharpe@profmsharpe Glad you read it. And I understand your wishes. However those were not the primary outcomes. It is a trial not a policy. The results are what they are.

Ah so will you be advocating for NICE to withdraw CBT and GET or maintain them in the guidelines in that case? All the US agencies have used the information gathered from PACE to withdraw CBT and GET as effective treatments.

 

[Lucibee]

Sharpe: "That's how the illness is defined."
No. That's how you've chosen to define it, Prof Sharpe. You've defined it by a measure that you have devised to be so amenable to subjective suggestion that you can easily (or not so easily *cough*) fix it and report you have fixed the underlying condition. Win win win!

 

[Esther12]

Sharpe: "That's how the illness is defined."
No. That's how you've chosen to define it, Prof Sharpe. You've defined it by a measure that you have devised to be so amenable to subjective suggestion that you can easily (or not so easily *cough*) fix it and report you have fixed the underlying condition. Win win win!

That line of theirs bugs me whenever I see it. Patients did not decide to define their illness through the Chalder fatigue scale and SF36-PF. Even something like the Oxford criteria, which requires patients have fatigue which is sever and disabling, does not require that the disabling nature of fatigue be assessed through just subjective self-report measures.

There are certainly difficulties with knowing how to define and measure CFS, but that doesn't make the problems with PACE disappear.

 

[chrisb]

Is there not a paper written by Sharpe in 1997 stating that CFS is merely neurasthenia with or without added anxiety and/or depression.

Perhaps he should believe patients when they tell him their views of that.

 

[Barry]

In which case what other interest(s) of @dave30th's does MS have a problem with? An interest cannot be in conflict with itself; there have to be at least two for there to be any possibility of conflict between them.

 

[TiredSam]

I am inclined to believe patients.

Can we please have an emoji for "you have got to be absolutely shitting me"?

Thank you.

 

[Sisyphus]

His idea is to divide and conquer, if he can make us look bad he will.


If someone commits a crime and has the only evidence locked up in their safe and can use the cover of threats to keep it from being subpoenaed then its in their interest to do so. Its not ethical but if they are willing to doctor their results then they are already of questionable ethics.
That said i don't think threats even in "jest" are a good idea, you can't really separate the blowing off steam ones from the legitimate threats

Yeah I think That ideally there would be some consequences for a certain level of threat, but with the current climate in the USA such a facility would only used to excuse really dangerous threats issued along with viewpoints the authority is sympathetic to and punish people for expressing unapproved thoughts.
e.g: Twitter, Youtube, etc.
Most power ripens into abuse of power.

 

[Jonathan Edwards]

Why doesn't Dr Sharpe call me out for my conflict of interest?

Is it that as a professor at Oxford University he is used to arguing with those he considers lesser mortals and prefers to stick with that? (I found Oxford a bit stuffy as a student so moved to the University of London.)

Pretty much everything David has put out has been cross checked with multiple senior academics. In many instances he has facilitated communications from those academics. What conflicts of interest do us academics have then? The Biobank people do try to make sure there are sandwiches at meetings, but last time we had to make do with instant coffee! (The cakey things were good though.)