Michael Sharpe skewered by @JohntheJack on Twitter

Well any discussion of psychology and CFS eventually leads to Simon Wessley being mentioned, so his @ing of Godwin is some sort of reverse-Godwin. or something.

 

!!

Godwin's Law II: Anyone who invokes Godwin's law when no Nazis were mentioned automatically loses the argument.

Godwin's Law III: Anyone who invokes Godwin's law when no Nazis were mentioned AND feels the need to tag Godwin and mention old school connections is just being a dick.

 

Ghaemi has other books. I am reading one now on statistics and epidemiology.

 

@Mike Godwin is a forum member now.

 

Welcome to the forum!

 

https://twitter.com/user/status/1007201569723572224


@Mike Godwin continued (apologies if I’ve got these tweets in wrong order):

“I think humility is good for everyone, generally speaking. There are many medical conditions whose aetiology is mysterious or at least ambiguous. Symptoms, and strategies for treating the symptoms, may vary among individuals who have the same condition....

... with the result that both diagnosis and treatment need to be considered as provisional hypotheses--in Karl Popper's terms, as "conjectures" subject to possible refutation. Humility requires that we be open to the possibility of refutation.

The difficulty, when dealing with a complex system (which is what every human being is) is figuring out (a) an experimental model that truly allows for refutation, and (b) properly interpreting the data so that a true refutation is recognized but an ambiguous "refutation" isn't.

I take the view that individuals' psychological processes are part of the system that is being analyzed, so you can't exclude psychological elements categorically in interpreting data. But the ruling out of psychological elements of a syndrome can be especially hard.

To analogize to a wholly different subject--because the causes and treatment of obesity have been poorly understood until relatively recently, obese patients have been presumed to lack discipline or otherwise be morally responsible for their condition.

My own review of the research in that area--and that review has been extensive over the course of years--is that the "lack of discipline" hypothesis has been refuted, as have (most) treatment modalities based on that hypothesis. Patients have been stigmatized.

Those patients in the obesity context may not even have the comfort of a community of fellow sufferers who can tell them that the "lack of discipline" model is wrong, because our culture is steeped in that model. Their doctors honestly believe in the model!

The evidence over many decades, however, shows that the traditional treatment strategies for obesity do not work to any significant degree. But because human beings are complex systems, with actual psychologies, it's easy for well-meaning physicians to dismiss disconfirming data.

Further complicating interpretation of data in the obesity context is that patients may report uncontrollable behaviors (or show evidence of them), which is seen as confirmation of the "lack of discipline" model. But of course behaviors may be (e.g.) endocrinologically rooted.

So whenever there's a mismatch between a theoretical framework and success in treating patients with complex, incompletely understood illnesses, there is the problem of deciding how to interpret data. Humility suggests that we should be as open as possible to disconfirmation.

Part of humility and being open to disconfirmation has to be constructing experimental models that are sufficiently rigorous that apparent disconfirmation can't be explained/rationalized away. (Properly such data should be used to refine/sharpen the experimental model.)

But because human biological systems are complex, not least because (we believe) psychological factors do affect our responses to treatment, the temptation is "revise" our assessment of the data rather than to revise the experimental model itself. That's a poor approach.

The natural temptation for a patient who has been ill-served by the prevailing medical theory is to be angry at the researchers. I get that. But researchers are no less human than the rest of us, and we all have problems stepping away from cherished theories.

But it's generally difficult to persuade researchers to abandon or revise the dominant paradigm if you insist on understanding them as villainous or mercenary. So it's best, to the extent possible, to uncouple the refutation of the theory from condemnation of the researchers.”


Welcome to the S4ME forum, Mike, Great to have you here.

 

I would agree that it is best to uncouple refutation of theory from condemnation of researchers.

I would also point out that researchers have a responsibility to make sure their theories and trial results are not abused and misunderstood.

One example of this was the press release of PACE where Trudie Chalder overinflated the recovery figures for those undergoing CBT & GET. This is just one of many misleading statements that was never retracted.

Healthcare professionals and researchers should bear in mind that what they say and do affects real people. The effect of the BPS narrative, shored up by PACE, has been cumulative for patients: disbelief and lack of support from family, friends, employers and healthcare professionals, denial of disability aids, social care and denial of benefits.

Patients have been condemned and had their reputations destroyed too.

Edited - spelling

 

https://twitter.com/user/status/1007211255998840832


Mike continued...

“None of the foregoing is a defense of the PACE trial, which, based on my current understanding, seems so profoundly flawed that it cannot be trusted. Nor is it a defense of researchers who should have been more rigorous. But humility is good practice for all of us, and ...

... part of humility requires that we acknowledge that most people, even those who profoundly disagree with us, see themselves as the heroes of their own stories, not as the villains. So we do better to try to win them over rather than to condemn them for their mistakes.”


https://twitter.com/user/status/1007210552312156160

https://twitter.com/user/status/1007213653664370688


[Edited to add my last teeets overlapped with Mike’s]

 

An excellent and very welcome analysis from @Mike Godwin. I'm having a little trouble with the last bit though:

Eminently sensible. But it's been thirty years, many have lost half their lives due to these heroes of their own stories, and they have not given an inch, but rather stuck the boot in at every opportunity.

Next on @Mike Godwin's reading list could be the links between the PACE researchers, the DWP, insurance companies, the Science Media Center, etc etc.

When I'm not ranting on this forum I do try to give people the benefit of the doubt, walk in their shoes, overlook their egos etc etc. But I am afraid I am fucking furious with Mr Wessely, and that's not changing any time soon.

 

Just seen this:

Oh good, because the evidence is all there.

 

Excellent! Big welcome @Mike Godwin

 

Those who have been arguing that the PACE trial had no effect on policy seem to have forgotten the PACE helped insurance companies Deney or limit claims. http://www.virology.ws/2017/08/07/trial-by-error-retired-pace-investigator-peter-white-and-swiss-re/

 

Also let’s not forget how influential it’s been internationally with policy in many different countries

 

In fact, to claim it is anything but the most influential study on ME/CFS treatment globally seems a nonsense to me? (At this point it’s almost impossible to extricate the actual study from the spin around it and the larger BPS framework it apparently substantiated)

 

When researchers are politically, commerically and systemically involved in the way patients are treated and that involvement has a negative impact which has caused significant suffering and distress, a patient should at least feel entitled to some constructive anger. The issues with PACE and the many researchers involved in or related to it, can no longer be contained within the boundaries of Science alone.

We have strayed heavily into the ethics of handling medically unexplained illnesses and ME/CFS has fallen victim to the modern tendency to allow psychiatry (which has usurped the role previously conducted by spirituality) an inordinate stake in the medically unexplained. The most sad part of this affair is that good psychiatry has a role to play in all illness and by over-playing its hand in ME/CFS it hasn't just caused suffering, it has missed opportunities to do a lot of good.

I am a pragmatist though, I'm far more interested in reduced suffering and better research than a reckoning for bad research.

In this information age, when you have millions of patients worldwide who have instant access to individuals, there will inevitably be some unhelpful exchanges. But this is very much a problem for the age and has little to do with ME/CFS specifically (as much as some of the PACE researchers like to depict otherwise).

Following recent social media output from Sharpe, I get the impression he is now obsessed with painting those that criticise his work as unreasonable or biased. I can't help but feel some degree of pity. Criticisms of his work have not only developed, they have widened in scope, increased in number (including more academic and peer reviewed critique). I wonder if this is the denial period before the final capitulation which will inevitably come as we un-earth the true cause/causes of ME/CFS.

 

Yes, and worse still, is directly responsible for families being harassed, accused, and and torn apart by the forced or coerced sectioning of the ME patient under the mental health act, which has lead to catastrophic worsening of the patient's health as well as fear of seeking medical or social help. (If someone would like to provide links for Karina, Sofia, Bob, Karin, et al)

 

Exactly my problem. I am fucking furious. I don't want to be. When it comes to other aspects of my life I can be like anyone else and quite reasonable. But time has also taken it's toll. And that is directly down to the small cadre of BPSer's who in the first place stopped seeing the people they dealt with as people and treated them as throw away, shirkers, lazy do nothing wannabes who needed their help to become 'proper' members of society -- denying the real suffering of people who just wanted their lives back. And no amount of what anybody said otherwise was listened to.

They're bloody psychiatrists (some of them) and the one thing they should have got right was to listen and hear what was being said to them. They couldn't of course because they had sold their services to masters that could reward them unlike patients who would just show gratitude.

I agree that if there were to be any rapproachement between us that we'd need to leave room (leave off pointing out what they've done) for them to gracefully (quietly) leave off dissembling with regard to PACE.

Well it's certainly sad it's come to this but for many very good reasons I'm way past that. They'll either have to remain seated on their high horse or get forcefully dislodged by what's to come. If that sucks then they should try living our lives. They've got all the gongs and Tchokchkes that came with selling out patients, this is what they signed up for.

Edit: typo fix

 

Nice to see Mike Godwin engaging. This last bit does sound a little bit like teaching granny to suck eggs though. The PWME who have been pointing out the problems with trials have done a brilliant job of uncoupling refutation of theory from condemnation. Alem Matthees, Tom Kindlon, Carolyn Wilshire and Keith Geraghty have been exemplary in the courteous way they have presented their concerns. The fact that some others may have been less civil is an irrelevance used as a smokescreen.

I also think that it is not unreasonable to condemn scientists for being disingenuous and manipulative in their public communications. It was the blatant misrepresentation of the situation by Peter White that made me think something was badly wrong. And when this misrepresentation is having a major effect on health service provision there is something even more badly wrong.

My last point would be that it is only difficult to persuade second rate researchers to abandon or revise a dominant paradigm. Maybe that is the majority but in my experience a decent scientist will have revised their paradigm before you have even finished the sentence if you have a critical argument to make. The sign of a really good scientist is that he finishes your sentence for you with the correct new inference. Those are the people who actually drive science forward.

 

@Mike Godwin

I think the notion Sharpe and Wessely have been tweeting out that PACE was "just a trial and hasn't even impacted current policy" is disingenuous and needs to be pointed out.

If it wasn't for patients initially pointing out the flaws they would still be going around claiming improvement rates of 60% and recovery rates of 30% because they received funding from the DWP to grow the meaningless brand of CFS at the same time companies like ATOS were so appalling that they lost the contract to do disability benefit assessments. The PACE trial was designed to do a hit job on sick people when the true figures of recovery/improvement figures are scientifically insignificant. So much so that they changed the recovery definition half way through the trial which meant people could be declared recovered and still ill at the same time.

That brought in the hundreds of academics, doctors and scientists who have now pointed out that the BPS crowd of Wessely, White, Sharpe and others have no clothes on and that the SMC is being used to pump out spin and garbage on the issue of ME.

That is why the CDC has completely dropped CBT and GET now and the IOM have condemned the PACE study etc and why NICE is doing a thorough review of their guidelines.

 

Well done everyone.

https://twitter.com/user/status/1007316550397956103