Ben Goldacre: checking if clinical trials reported what they said they would

[Mrs Sowester]

And one thing that strikes me as really interesting is that he hasn't read the PACE paper. Which suggests to me he is deliberately avoiding getting drawn into this battle - it can't be comfortable for BG sitting on that particular fence!

 

[Large Donner]

Ben Goldacre is so selective about "bad science" he only wants to address bad science when he says its bad. When its on a plate for him with years worth of documented proof, abuse of patients, spin, lies and corporate fraud with political involvement he isn't interested.

Its very interesting that this keeps real bad science out of the mainstream consciousness and out of the media.

Over here this way, look this way, here it is everyone......dont look over there its here!!!!!

He is a magician.

That's how you make money from Bad science, being in the right club.

 

[adreno]

It is really disappointing he's not come through for us, but we can't demand the man commit professional suicide

I don't know why people keep saying this. Perhaps he'll be even more respected and followed if he stands up for his ideals. I don't think criticizing PACE automatically equates career suicide. It just takes balls.

 

[Hip]

Ben Goldacre is so selective about "bad science" he only wants to address bad science when he says its bad.

Apart from PACE, can you give any examples to back up your accusation of selectivity?

 

[Mrs Sowester]

I don't know why people keep saying this. Perhaps he'll be even more respected and followed if he stands up for his ideals. I don't think criticizing PACE automatically equates career suicide.

Because Wessley was his mentor, Wessley has massive influence politically, the network of influential people is really tight in the UK. BG would most likely get monstered in the right wing press.

 

[Snowdrop]

@Mrs Sowester

I do take your point about the risk to BG should he speak up.
It's easy for me to say.
You suggest professional suicide. I have no way of gaging that. If that's so then I guess it be something to think about before leaping.

But then again--this is his purview. Is he really only going to go for what's comfortable and safe? I guess that comes down to temperament.
His voice though--should he add it to the rest would have quite an impact I would think (maybe I imagine more than is realistic?)

And I suppose that poking him on social media about it will be to little effect.

 

[Mrs Sowester]

@Mrs Sowester

I do take your point about the risk to BG should he speak up.
It's easy for me to say.
You suggest professional suicide. I have no way of gaging that. If that's so then I guess it be something to think about before leaping.

But then again--this is his purview. Is he really only going to go for what's comfortable and safe? I guess that comes down to temperament.
His voice though--should he add it to the rest would have quite an impact I would think (maybe I imagine more than is realistic?)

And I suppose that poking him on social media about it will be to little effect.

There is a reason BG's staying out of it and think we just have to accept and respect it - whatever it is. I followed the Leveson inquiry (love a bit of politics!) and the closeness of the elite and powerful in this country is astonishing, the networks go beyond political parties, the movers and shakers (and Wessley is one of them) are all hand in glove. They'll all be networking at charity balls, polo matches, country suppers and the like. If one of this in crowd bites the hand that feeds it then doors are suddenly shut, the invites stop, the phone stops ringing.
I think it's a real shame that BG is turning a blind eye, but we can't make him look our way and we'd do better to save our energy for people that are able to help.

 

[BurnA]

There is a reason BG's staying out of it and think we just have to accept and respect it - whatever it is. I followed the Leveson inquiry (love a bit of politics!) and the closeness of the elite and powerful in this country is astonishing, the networks go beyond political parties, the movers and shakers (and Wessley is one of them) are all hand in glove. They'll all be networking at charity balls, polo matches, country suppers and the like. If one of this in crowd bites the hand that feeds it then doors are suddenly shut, the invites stop, the phone stops ringing.
I think it's a real shame that BG is turning a blind eye, but we can't make him look our way and we'd do better to save our energy for people that are able to help.

I don't disagree with you but if he was a man he would speak up. We don't have to respect his decision though.
This tells us a lot about BG the person.

The real heros in this world are those who speak up in the face of injustice because it's the right thing to do. They are not concerned about losing friends because they know that any friends they might lose are not real friends anyway.

The stupid thing is he could become so much more respected if he did speak up but he is a coward.

 

[BurnA]

I did, but could not find any info. Where did you see the half million sales figure for Bad Science, may I ask?




Even if he does make a decent amount of money, I don't really see how this makes it incumbent upon Goldacre to come to the rescue of ME/CFS patients.

Let me be clear. It is not incumbant on him to come to the rescue of anyone.
However, if he chooses to make a living from bad science then it is incumbent on him to write about all bad science equally.

BTW his website is where he proudly announces how many copies he sold.

 

[Aurator]

@Aurator & Snowdrop,
It is really disappointing he's not come through for us, but we can't demand the man commit professional suicide. We can't demand he become an advocate.

It's not the case that he has to be an advocate - for anyone or anything; he just has to shine his analytical light on PACE and say what he thinks of it and why. As one of the worst bits of bad science in many years it's nothing short of absurd that Goldacre, with his professed intention of exposing bad science, repeatedly passes PACE over for concentrated criticism. If he was only tangentially aware of its existence and the controversy surrounding it he might be excused, but it's inevitable by now that he knows only too well how PACE measures up as science. Given his self-appointed role, his abstention from critical comment on PACE is itself evidence of how well aware he is of its flaws.

 

[Mrs Sowester]

I don't disagree with you but if he was a man he would speak up. We don't have to respect his decision though.
This tells us a lot about BG the person.

The real heros in this world are those who speak up in the face of injustice because it's the right thing to do. They are not concerned about losing friends because they know that any friends they might lose are not real friends anyway.

The stupid thing is he could become so much more respected if he did speak up but he is a coward.

Yep, it's a shame and I don't imagine he's too comfortable with his conscience right now (or with the splinters from sitting on that fence).

 

[BurnA]

Because Wessley was his mentor, Wessley has massive influence politically, the network of influential people is really tight in the UK. BG would most likely get monstered in the right wing press.

Everything about wessley is correct but BG wouldn't get monstered by the right wing press - he would get monstered by wessley, who controls the SMC, who would monster him in the right wing press.

 

[jimells]

We can't demand he become an advocate. But the tide is turning elsewhere, the rest of the planet is turning on PACE and it will either be blown out of the water dramatically or it'll be side-lined and allowed to die quietly forgotten in a corner.

There is a diplomatic way out for Goldacre: he could add his name to the call for an independent review of the study. That would avoid any need for him to directly criticize his buddy Sir Simon, and he would still be seen as promoting good science, and us loudmouths would have to pick on someone else.

Who can be against an independent review? If the study is solid, a review would confirm that and bolster the importance of the research. If the study is flawed, who can possibly be opposed to correcting mistakes, re-assessing the conclusions, and moving the science ahead. Isn't that supposed to be the purpose of research?

Of course, if a review revealed blatant fraud, well, then things could get a little messy for a lot of people.

 

[Hip]

The PACE trial is only one instance of the bad science / pseudoscience at the heart of the medical profession and psychiatry: it is the whole notion of somatoform disorders that acts as a wellspring of bad science in medicine.

The concept of somatization needs to be purged from medicine. The empirical evidence base for somatization is really non-existent.

ME/CFS is only one of several diseases that had the horrible misfortune of being sucked into the vortex of unscientific stupidity known as somatization theory. Conditions like fibromyalgia, irritable bowel syndrome, interstitial cystitis, lower back pain of unidentifiable cause, non-cardiac chest pain, and others have all been tarred with the somatization brush. Once you tar a disease like this, the amount of serious biomedical research done on the disease plummets.

If you want to do a good job of tackling bad science / pseudoscience in medicine, you need to tackle the whole pile of nonsense that is somatization. The concept of somatization is the last bit of Medieval magical thinking corrupting the science of modern medicine.



However, I understand it was Simon Wessely who was largely responsible for reanimating the theory of somatization, and bringing it back into mainstream medicine. The term somatization was introduced in 1924, but as a concept fell out of use and circulation (no doubt because it could not be empirically validated). But Wessely reanimated the theory of somatization, brought it back into mainstream medicine, and indeed has made his career out of it. Somatization is Wessely's baby.



So anyone who wants to tackle the bad science of somatization needs not only to tackle the PACE trial, but also be unafraid to take the axe of empirical scrutiny to the whole theory of somatization, which is Wessely's baby and career.

 

[jimells]

The real heros in this world are those who speak up in the face of injustice because it's the right thing to do. They are not concerned about losing friends because they know that any friends they might lose are not real friends anyway.

Like Dr Coyne? I get the impression the psychobabblers have been trying to strong-arm him into silence. Some of his tweets seem to hint that way. Like a true gentleman, he has said little; he prefers to keep the focus on the research and the PACE People, and not make it about himself.

This is a classic example of "reform from the inside" vs. "reform from the outside" and it is clear that reform will only come from outside the club. Insiders like Goldacre are not in a position to push for reform; he would just be pushed aside as a disloyal traitor, where he could join Coyne in calling for reform from the outside, and then he could potentially be effective.

 

[Mrs Sowester]

@jimells
My bet is that BG will stay firmly on the fence. It would be fantastic to be proved wrong though, fingers crossed he finds his conscience.
I'm having a great time discussing this with you all, but I'm crashing so I'll bow out till tomorrow

 

[halcyon]

Have you not previously read that a lot of scientists are put off going into ME/CFS research because of the unpleasant politics? Which is not surprising, since who wants to conduct science and forge a career in a political cesspit?

I honestly believe that this has nothing to do with it. I'd be curious to see sources where a biomedical researcher said they avoided ME research for this specific reason. This seems to dominate the discussion in the UK, where stories of harassment come up at every opportunity, yet I've never heard of such a thing here in the US. I have to imagine that even Lipkin took some heat for the negative XMRV studies from true believers, yet he does not seem discouraged and instead has redoubled his efforts to research ME.

My guess is that they are more put off by the dismal availability of research grants. That makes the prospect much more of a nonstarter than the possibility of unpleasant politics.

 

[jimells]

My guess is that they are more put off by the dismal availability of research grants. That makes the prospect much more of a nonstarter than the possibility of unpleasant politics.

Yes exactly. And if the Wessely School doesn't like all the naughty things we are saying about them, well, they don't have to come here and read them!

 

[Snow Leopard]

It shows that Ben just want to make political points (about bad science) to further his prestige and career and doesn't actually give a fuck about us. (makes me wonder whether he cares about any other patient groups either)

 

[BurnA]

It shows that Ben just want to make political points (about bad science) to further his prestige and career and doesn't actually give a fuck about us. (makes me wonder whether he cares about any other patient groups either)

Yes, I have the same thoughts. My conclusion is that he is only in this for the money and doesn't care about any group.