alex3619
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David Tuller: 'Trial by error continued: the real data'
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adreno
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Horton should be our main line of attack. The peer-review system is the gatekeeper that (should) keep bad science from harming patients. He has utterly failed in this regard. He is also the weakest link in the chain of academics, bureaucrats and vested interests. Keep the pressure on him to either retract PACE, or resign. If he resigns, his successor will have no choice but to retract PACE.
Retract or resign.
Retract or resign.
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Kati
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In my opinion there should be many lines of attack (for you PACE people, nah, we are not violent, many are too sick to turn in their beds)
- medical societies-conferences: spreading the word.
- bioethics scoieties (which could be helpful in guiding the policy makers on how best to proceed moving forward)
- Nice guidelines need to be changing. i heard from a Facebook convo that the proceedings to edit the NICE guidelines would begin early January
- retraction of PACE
-obtaining more PACE trial data as suggested by Alem Matthees
- national health policies changes
adreno
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The NICE guidelines and health policies are heavily hinged on the research (PACE) and therefore retraction of PACE is a gateway to making these things happen.
taniaaust1
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if it is retracted before people get more of the PACE trial data, does that mean that more data wouldnt be available on it once retraction occurs?
(maybe in that data could be more evidence that they commited fraud).
taniaaust1
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If he didnt understand there was issues before, I think there is no way at this point of time that he couldnt understand that there is big issues with it. Ive sure he's got people in his ear who would be sharing things being said online etc.
My question is I wonder how long its going to take him to break and admit he was wrong. If he doesnt do that,I'd personally think that someone must of paid him a lot of money to support it.
taniaaust1
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The community could start calling him Sir Tuller
(Im being serious) , to make a stand that a wrong person got knighted and he has put so much work out into pointing out the issues up against those strong ones supporting PACE.
Stewart
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I agree with everything you've said about Horton's failure - the problem (to my eyes) in making him the main line of attack is that in the past he has proven remarkably resistant to overwhelming pressure even when the Lancet has clearly been in the wrong. Look at the Wakefield case - Horton knew the paper was fraudulent in 2004 but he point-blank refused to retract the paper until 2010, and only then because the GMC struck Wakefield off.
He seems to mistakenly believe that it's in the best interests of The Lancet's reputation for him to digs his heels in as long as possible, refusing to accept any screw-ups that they've made. He's clearly going to do the same with PACE, given how much he's personally associated himself with the trial over the years.
If we can get PACE widely discredited - by scientists, academics, NICE, the media, politicians - then sooner or later The Lancet will have to follow suit (but it'll almost certainly be later).
I think the NICE guidelines actually predate PACE and are based on earlier, smaller studies into the effectiveness of CBT and GET - so what we need is for NICE to accept that the Matthees reanalysis shows that in reality the PACE data comprehensively disproves those earlier studies as well.
The community could start calling him Sir Tuller
The correct nomenclature would be "Sir David" - as a Brit I can tell you that it's *very* important to get our arcane honours system right.
As for the knighting of that 'wrong person' - well there's this little used process called debasement that I think we need to look into down the road...
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The more i read from White and Chalder it becomes clear that these people are not only very dangerous for the CFS/ME patiënts but also for the medical society. They operate like dictators. These people have a very bad karma. I believe that what goes around comes around.
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adreno
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I agree. And in every reiteration of this message, we should be sure to mention Horton and the Lancet's role in this, to increase the pressure on them to act.
I doubt this is going to happen before PACE is retracted. Weighing a patient-authored blog analysis against peer-reviewed evidence, I think I know what NICE will choose. But call me a pessimist.
Esther12
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Regardless of his response now, I think his past behaviors means that he should resign.
The Lancet paper is unlikely to be retracted and doesn't contain the same sort of errors as the Psych Med recovery paper.
adreno
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Of course he should resign. But that is perhaps more unlikely than a paper retraction. And if he thinks a retraction could save him, I would actually prefer that outcome.
In the meantime I think referring to him as "disgraced peer Sir ... " will do.
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anciendaze
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I think there is considerable wishful thinking on this thread. There are a number of quotes from the BPS school showing they knew that the recommended therapeutic interventions were not very effective, and that any positive effects were transient, prior to PACE.
When the long-term follow-up showed patients in different arms of the study were indistinguishable, word from Oxford was that either the mere influence of the BPS school on the NHS meant that all were being treated effectively, or that the condition would go away without treatment. The idea seems to be that all you have to do is keep patients occupied for a while, without actually doing anything, and they will recover. The therapy is simply a way for the U.K. government to say it is doing something while waiting for patients to get better on their own. Making the patients responsible for treatment outcomes saves expenditures.
Patients driven to suicide are "obviously" crazy, which means you should put psychiatrists in charge of them, and ignore whatever the patient says. This is another means of shifting responsibility, so that doctors are responsible for things that go right, while patients are responsible for whatever goes wrong.
The real problem with these interventions comes from harms, which PACE pretty well avoided seeing at all. They dropped actimeter readings which might have shown patients displacing activity to participate in treatment, making it impossible to tell if total activity went up or down.
The oversight in the 6-minute walk test, allowing those who didn't feel like walking to decline the test, would also tend to exclude anyone made worse by treatment. Redefining adverse events, and serious adverse events, likewise made it harder to detect those who became worse. The discussion on harms doesn't even mention rates of hospitalization, since the authors were certain this could not have been caused by anything they did or did not do.
Without evidence of harms there is a strong tendency among politicians to claim that a cheap tacit policy of "benign neglect" is really the most effective thing available. ("See, we are doing something.") The whole subject of harms is being handled like a criminal defense aiming at the Scottish verdict of "not proven".
I don't expect a real change in U.K. policy until work elsewhere shows patients actually recovering in objectively measurable ways.
When the long-term follow-up showed patients in different arms of the study were indistinguishable, word from Oxford was that either the mere influence of the BPS school on the NHS meant that all were being treated effectively, or that the condition would go away without treatment. The idea seems to be that all you have to do is keep patients occupied for a while, without actually doing anything, and they will recover. The therapy is simply a way for the U.K. government to say it is doing something while waiting for patients to get better on their own. Making the patients responsible for treatment outcomes saves expenditures.
Patients driven to suicide are "obviously" crazy, which means you should put psychiatrists in charge of them, and ignore whatever the patient says. This is another means of shifting responsibility, so that doctors are responsible for things that go right, while patients are responsible for whatever goes wrong.
The real problem with these interventions comes from harms, which PACE pretty well avoided seeing at all. They dropped actimeter readings which might have shown patients displacing activity to participate in treatment, making it impossible to tell if total activity went up or down.
The oversight in the 6-minute walk test, allowing those who didn't feel like walking to decline the test, would also tend to exclude anyone made worse by treatment. Redefining adverse events, and serious adverse events, likewise made it harder to detect those who became worse. The discussion on harms doesn't even mention rates of hospitalization, since the authors were certain this could not have been caused by anything they did or did not do.
Without evidence of harms there is a strong tendency among politicians to claim that a cheap tacit policy of "benign neglect" is really the most effective thing available. ("See, we are doing something.") The whole subject of harms is being handled like a criminal defense aiming at the Scottish verdict of "not proven".
I don't expect a real change in U.K. policy until work elsewhere shows patients actually recovering in objectively measurable ways.
Well they don't so that's bollocks.
EDIT: Sorry, little outburst of Tourette's there.
anciendaze
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And how common are bollocks in political discussions?
The gender imbalance in politics has often been considered.
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Just a reminder that an anagram of that unnamed 'Sir' is "Some sly swine"....
This is how gangs operate. Bullying, crazymaking, gaslighting, projection, scapegoating--whatever it takes to retain control of the (insane) narrative and the sense of power.
Admitting a mistake is equivalent to death for these people. Ego death is a terrifying prospect to those who identify strongly with their ego-construct rather than their actual shared humanity.
Be it schoolyard bullies, mafias, street gangs, cult leaders, zealots of any kind--all this is right out of the playbook.
Admitting a mistake is equivalent to death for these people. Ego death is a terrifying prospect to those who identify strongly with their ego-construct rather than their actual shared humanity.
Be it schoolyard bullies, mafias, street gangs, cult leaders, zealots of any kind--all this is right out of the playbook.
Extremely.