Information Commissioner's Office orders release of PACE trial data
- Thread starter Sasha
- Start date
Yes, I think this goes to the heart of the problem with behavioural interventions. Psychologists and psychiatrists often believe that the placebo effect reflects real health improvement. Therefore, it is reasonable to count it as part of the positives associated with an intervention. You don't need to control for it!
Actually, the "powerful placebo" is a pretty widely held view amongst doctors - all I have met believe fervently that it can in itself to produce real change (@Jonathan Edwards, perhaps you can be the first to break that stereotype?)
What they don't consider is the research that suggests that placebo effects are largely artefactual - they reflect reporting biases and recall biases induced by expectation rather than real genuine change. See Hróbjartsson & Gøtzsche (2010, Cochrane review). So if you've been receiving a wonder treatment for the last six weeks, and you're asked to look back and rate your health for that period, you might be more likely to remember the times you felt better. You're actually no better, you're just biased in your recall.
Actually, the "powerful placebo" is a pretty widely held view amongst doctors - all I have met believe fervently that it can in itself to produce real change (@Jonathan Edwards, perhaps you can be the first to break that stereotype?)
What they don't consider is the research that suggests that placebo effects are largely artefactual - they reflect reporting biases and recall biases induced by expectation rather than real genuine change. See Hróbjartsson & Gøtzsche (2010, Cochrane review). So if you've been receiving a wonder treatment for the last six weeks, and you're asked to look back and rate your health for that period, you might be more likely to remember the times you felt better. You're actually no better, you're just biased in your recall.
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I think showing the science to the right people, and responding via scientific publication like many including Tom Kindlon do is a great way to go. Secondly, attracting people like James Coyne and other figures from out of the field is a great thing.
Kicking over trashcan. Oh dear. I can't stand the noise.
Kicking over trashcan. Oh dear. I can't stand the noise.
Your approach has always been, and probably always will be, calm and sensible. That's what we want and need. You are doing wonderful work for patients worldwide. Huge thanks!Still, my fuzzy mind is making a lot of silly pictures today trying to imagine what is going on in the heads of the BPS school and QMUL. It's hard to reconcile their smear campaign statements with the reality of ME advocacy and the physical ability of most ME advocates. So my brain ends up with nonsense pictures like very elderly Kati and @Sasha, those leaders of ME militancy
, finally getting "violent" in their own quiet way. It just shows how ridiculous the claims of ME militancy are.
Oh woops, I think I've broken this rule a few times (although never used the biggies). Will promise to be cleaner in future.
I recently slipped and wrote WTF... just that, the letters W. T. F. It was politely corrected and it now reads "What the heck" Oh yeah, we bad.
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I know. Your approach has always been, and probably always will be, calm and sensible. That's what we want and need. You are doing wonderful work for patients worldwide. Huge thanks!
Your approach has always been, and probably always will be, calm and sensible. That's what we want and need. You are doing wonderful work for patients worldwide. Huge thanks!
I am hopeless and frustrated, angry and wondering if there is a light at the end of the tunnel.
But I know to keep on going, poking tweets at those groups that need to be educated and made aware of the injustice patients with ME has to go through for so long
I marvel at the fact that we each are different in what we can do and what we do. We each have a unique voice which many times complement one another.
We just need to have a voice that carry far and deep enough.
I wonder at what point it will be worth pointing out to QMUL that defending PACE is setting the university up for shame, embarrassment, and ridicule. The university is in a no-win situation. It cannot come out of this without some amount of smut. The question becomes how to minimize the damage. Do they throw the PACE researchers under the bus, claim rogue researchers, punish the researchers, and distance the university from this at best very poor, and at worst fraudulent, research? Or do they continue with their laughably hysterical and paranoid-sounding support of this ultimately indefensible research?
IMO, they can let the PACE researchers take QMUL down with them, or the university can admit failure of some of their staff and set about doing damage control. That's my opinion. QMUL is likely to have an entirely different perspective. Maybe their legal staff can find a better out for the university. That's not going to happen with their currently strident and hysterical approach, though. My guess is that their legal department was caught on the hop and had to rely (in the short term) on what the PACE researchers told it about the research and the "militant" ME advocates and "harrassment" at places like PR. If the lawyers get around to looking into those claims, they can easily see those claims have no legal (or even rational) leg to stand on. What's going to happen then, I wonder. I wouldn't want to be a QMUL lawyer right now.
IMO, they can let the PACE researchers take QMUL down with them, or the university can admit failure of some of their staff and set about doing damage control. That's my opinion. QMUL is likely to have an entirely different perspective. Maybe their legal staff can find a better out for the university. That's not going to happen with their currently strident and hysterical approach, though. My guess is that their legal department was caught on the hop and had to rely (in the short term) on what the PACE researchers told it about the research and the "militant" ME advocates and "harrassment" at places like PR. If the lawyers get around to looking into those claims, they can easily see those claims have no legal (or even rational) leg to stand on. What's going to happen then, I wonder. I wouldn't want to be a QMUL lawyer right now.
I don't know - suspect that they might be in for a nice pay cheque.
That QMUL were citing international case law to try to support their claims makes it look like they've been paying ££ to have someone dress up their poor arguments. I wonder when they'll decide enough is enough and stop fighting against the release of results from this important and publicly funded medical trial. Eh - QMUL bod trawling this thread for evidence of evil patient's dangerous plans?
That QMUL were citing international case law to try to support their claims makes it look like they've been paying ££ to have someone dress up their poor arguments. I wonder when they'll decide enough is enough and stop fighting against the release of results from this important and publicly funded medical trial. Eh - QMUL bod trawling this thread for evidence of evil patient's dangerous plans?
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Kicking over trashcan. Oh dear. I can't stand the noise.
One exception, like a pacifier and strong tranquilizers, or a bottle of hooch, it helps keep patients quiet. I am guessing some docs like that. They should try truth (not speculation) and a kind and concerned disposition instead.
Oh dear, I am about to start my own pacifier protocol today. The game Fallout 4 unlocks for me in less than eleven hours. I cannot be causing mischief while I am playing it.
Oh dear, I am about to start my own pacifier protocol today. The game Fallout 4 unlocks for me in less than eleven hours. I cannot be causing mischief while I am playing it.
It certainly seems to be taking an awfully long time for the implications of this work to sink into the medical profession's collective brain.
Nobody is denying the existence of the placebo/nocebo effect. But as it stands the evidence for a sustained clinically significant effect, across a wide range of conditions, is simply not there. If it was it would have leapt out of that review.
Nobody is denying the existence of the placebo/nocebo effect. But as it stands the evidence for a sustained clinically significant effect, across a wide range of conditions, is simply not there. If it was it would have leapt out of that review.
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and you might be surprised how many peaceful, law-abiding animal rights campaigners (and many other campaigners) have experienced abuse. I had a phone call from another student who swore at me and said I should be killed and experimented on, simply because my phone number was given in the student society ad. He was Scottish. So I'm not sure whether I should assume that all students, or all Scots, are abusive or should be viewed with suspicion.
BTW, the police officer who came to take a statement couldn't get his head round the fact that I was the animal activist and the abuser was pro-animal experimentation! That's the power of propaganda. And when the abuser was traced and cautioned, I was not allowed to know his name, even though the call had caused me some fear. (I think that my address was also on the society's literature.)
BTW, the police officer who came to take a statement couldn't get his head round the fact that I was the animal activist and the abuser was pro-animal experimentation! That's the power of propaganda. And when the abuser was traced and cautioned, I was not allowed to know his name, even though the call had caused me some fear. (I think that my address was also on the society's literature.)
I wasn't encouraging comparisons. The point I was trying to make was that it is common for groups to be singled out as representing some kind of threat, and demonised for political reasons. Then the media capitalises on this for dramatic effect, sometimes directly encouraged (e.g. monetarily) by governments. Then the public come to believe that all members of these groups are to be suspected, despised and feared.
That is what is happening to us. It has happened to many other overwhelmingly law-abiding groups of people.
Whether it is perceived to be justified because there are small factions who are violent, who may be a tiny minority and may be rejected by the majority, is not really the point, and there are clearly differences of opinion about the various groups affected.
That is what is happening to us. It has happened to many other overwhelmingly law-abiding groups of people.
Whether it is perceived to be justified because there are small factions who are violent, who may be a tiny minority and may be rejected by the majority, is not really the point, and there are clearly differences of opinion about the various groups affected.
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In the same year, this paper was published claiming that a placebo could work even if people were told that it was a placebo.
I think there was another thread on this somewhere. Could this be it:
http://forums.phoenixrising.me/index.php?threads/can-we-make-good-use-of-placebos.10256/
http://forums.phoenixrising.me/index.php?threads/can-we-make-good-use-of-placebos.10256/
Don't forget, we're not all severely affected. On a good day I am strong, can walk about 500 metres on the level quite easily, and could easily kick over a trashcan/dustbin, but would absolutely not do it due to also being an environmentalist who abhors litter.
My 'militancy' tends to consist of scientific and factual/logical arguments. I might pick up a bit of litter as an act of angry defiance.
My 'militancy' tends to consist of scientific and factual/logical arguments. I might pick up a bit of litter as an act of angry defiance.