Information Commissioner's Office orders release of PACE trial data

[SOC]

I'm thinking Queen Mary University of London needs to change its name to Drama-Queen Mary University....

 

[Woolie]

They would say that the placebo is one of their most effective interventions, and that therefore this is part of the therapy.

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.

 

[Kati]

I'm thinking Queen Mary University of London needs to change its name to Drama-Queen Mary University....

That would fit in the 'Vexatious demand' category

 

[SOC]

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.

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!

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.

 

[Woolie]

Heck, we don't even allow naughty language.

Oh woops, I think I've broken this rule a few times (although never used the biggies). Will promise to be cleaner in future.

 

[SOC]

Oh woops, I think I've broken this rule a few times (although never used the biggies). Will promise to be cleaner in future.

Ah, we all do it sometimes. 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.

 

[SOC]

That would fit in the 'Vexatious demand' category

Sigh... yeah, I guess it would be. Think of the cost of all that letterhead....

 

[Kati]

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!

By all mean my voice is not perfect, nor is it always calm and sensible. So often
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.

 

[SOC]

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.

 

[Esther12]

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?

 

[alex3619]

Kicking over trashcan. Oh dear. I can't stand the noise.

We more than likely would be so PEMd, and having forgotten to recharge our electric wheelchairs, that the real protest would be from all of us collapsing and causing a rush of ambulances to get to us.

 

[alex3619]

What they don't consider is the research that suggests that placebo effects are largely artefactual

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.

 

[Sean]

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).

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.

 

[Sean]

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.

Yeah, somehow I don't think the lawyers will find more work from the QMUL an onerous burden.

 

[MeSci]

If some, then all, even if they say it by implication.

So does this mean that if some psychiatrists abuse their patients, then all psychiatrists abuse their patients? Or a less direct claim, like many psychiatrists abuse their patients, followed by extensive discussion of abusive psychiatrists without acknowledging that the vast majority of psychiatrists do not abuse their patients? Its insidious double speak, even if only by implication.

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.)

 

[MeSci]

It is a pity that happened to a cause close to you. But by going along with your line, the same negative effects by association could happen to the ME cause by saying we're the same as animal rights; Sinn Fein and the IRA; or whatever. I find that frustrating. We shouldn't be looking for extra problems.

There are some proactive groups out for some causes there causing problems in the 3-D world. Unfortunately they cause problems for many people associated with the general cause who are acting in a peaceful way.

However, there are no named groups associated with ME that have said to be involved with terrorism or damaging property. I don't accept we are like animal rights where there have been one or more such groups; Sinn Fein and the IRA; or the other example you give; etc.

Not every cause is tarred as being a particularly problematic group. We should not be encouraging comparisons with such groups.

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.

 

[MeSci]

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.

In the same year, this paper was published claiming that a placebo could work even if people were told that it was a placebo.

 

[A.B.]

In the same year, this paper was published claiming that a placebo could work even if people were told that it was a placebo.

Telling patients that placebos induce powerful healing effects, and then telling them they will be given a placebo is just an ordinary placebo effect. Patients are told to expect improvement.

 

[Woolie]

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/

 

[MeSci]

We more than likely would be so PEMd, and having forgotten to recharge our electric wheelchairs, that the real protest would be from all of us collapsing and causing a rush of ambulances to get to us.

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.