Edzard Ernst: Quackery is on the rise, and the placebo effect is part of the problem

[rvallee]

Quackery is on the rise, and the placebo effect is part of the problem
https://edzardernst.com/2022/06/qua...nd-the-placebo-effect-is-part-of-the-problem/

Prof. Fabricio Benedetti is one of the world’s leading experts in the study of placebo effects. I have mentioned his excellent work before, for instance, here where he cautioned that quackery has today one more weapon on its side, which is paradoxically represented by the hard science–supported placebo mechanisms. Now he has expressed his concerns even more clearly in an article entitled “Alternative and natural medicine quackery is on the rise. Here’s why the placebo effect is part of the problem”. Here are a few excerpts from this excellent paper:

For several decades now, many scientists, including me, have been working hard to reveal the full power and scope of the placebo effect — the amazing ability of a simple sugar pill or other non-pharmaceutical “fake intervention” to improve someone’s quality of life. This research has been crucial to giving scientific credibility to a powerful psychological effect. But the advances of science have also backfired, spawning an alternative industry that preys on the vulnerable…
...
The scientific advances in understanding placebo are fascinating. But one unfortunate outcome of all this work is that profit-seeking companies and individuals now have a new weapon: It is no longer necessary to demonstrate the effectiveness of their proposed therapies; it is enough to assert that these work because of the placebo effect. I receive myriad eccentric proposals for new therapies, ranging from talismans and concoctions to mascots and weird rituals. Their inventors claim that these are capable of inducing substantial health benefits and often seek my endorsement. These proposals have stepped up sharply in recent years. Sadly, the science of the placebo effect is fueling this new breed of pseudoscience…​

 

[rvallee]

I'm surprised it took this long for someone to notice, but Ernst isn't seeing the forest for the trees here. The problem isn't the placebo effect, or its nocebo twin, because it doesn't even exist, it's nothing but an artifact of not measuring things with neither accuracy nor precision.

It wouldn't be hard to invent a device that promises to generate free energy, and get people to agree that the water is a little warmer after being "heated" by the device. As long as no one measures anything, especially not temperature or power output, it's always possible to make false claims like this. But such BS is only possible in medicine, no other profession has fallen for such dumb stunts in decades because they are accountable. No one can spend someone else's money on BS and keep their job in the real world.

But they haven't seen anything yet, they opened Pandora's box here and it's not going to get any better. If anything, one constant pattern we have seen over the years it's that standards keep getting lowered and lowered so that an artifact of poor methodology can be claimed to be a relevant signal out of random noise.

The best example is IAPT, where they made specific claims that were entirely delusional. They invented a fake problem in multiple steps: 1) exaggerating costs for vague untestable concepts like anxiety and depression, 2) attributing those costs to those vague untestable concepts, then 3) asserting that for the cost of about £1B per year, they could "save" half of £12B, by claiming baselessly that they can boast 50% recovery rates in their biased artificial controlled experiments where they controlled everything, up to the final evaluation. Only the expenses are real, the savings are completely fake.

Because those standards cannot raise, ever. They have to keep getting lower and lower, in fact, as growing use will demand actual scrutiny. Especially as massive failures like IAPT have to face reality, after having lowered standards some more, they are currently simply avoiding accountability by simply hiding everything. It's not being audited because it would reveal the whole scam.

What they created here is a formula that allows to launder any pseudoscientific BS and makes it seem credible, by sheer quantity and repetition. The standard BPS formula can make it seem like healing crystals, snorting gummy bears or singing to the Moon, can improve anything by the mere claim of "helping", which is not a real or valid standard in either science or medicine.

But even that formula doesn't work, the standards have to keep getting lower and lower or it reveals the whole scam. As the standards keep getting lower, it will be even easier for people to show that any pseudoscience or alternative medicine out there is just as good as conventional medicine, since they simply reattribute benefits to the mere vague concept of "helping". Helping at anything, it literally doesn't matter. The primary losses are real, the secondary benefits fake.

The placebo is not part of the problem, it's not even a real thing. The problem is a turd-polishing factory process that produces polished turds out of literally anything. The combination of the biopsychosocial ideology and evidence-based medicine has effectively created the perfect pseudoscience: it is entirely devoid of any substance, because the process itself is the pseudoscience. It's indifferent to input or output, or anything in-between.

It's easy to predict what the future holds here, because we are it. When the evidence is debunked, they will just ignore it. The mountain of BS evidence the rely on will remain published, they will simply continue to selectively cite it, while at the same time saying that they know better by experience anyway so it doesn't matter.

We've seen episodes where if someone dares follow the normal process expected of science, like when Cochrane decided to unpublish the exercise review, they are attacked, openly and no doubt privately behind closed doors. We've also seen that when the evidence gets debunked after years of claiming that the evidence is indisputable because the trials are the evidence, they simply state that randomized trials are not possible here... because of the placebo.

Which is their whole thing, they are simply abusing the inaccuracy that comes from adding multiple fuzzying lenses on fuzzy data. But the only way this can be sustained over time is by simply eliminating any and all standards, making the whole process of EBM a pseudoscience-laundering factory that will make it easy to claim that swinging jackets at people cures their cancer.

Ernst doesn't seem to understand the problem yet, seems to think this is fixable by methodological changes, unaware that any such methodological changes will simply make the "evidence" disappear, which is obviously unacceptable for the industry. The standards can only get lower over time, it's the only way it established itself. Inevitably, the means become the ends. Lying to achieve a desired outcome requires to lie constantly for however how long the scam holds.

Basically they painted themselves in a corner, where the only way to keep going further is by allowing anything and anyone to claim the same thing they do because, in the end, the substance is irrelevant, the effect is an illusion anyway.

 

[bobbler]

I'm surprised it took this long for someone to notice, but Ernst isn't seeing the forest for the trees here. The problem isn't the placebo effect, or its nocebo twin, because it doesn't even exist, it's nothing but an artifact of not measuring things with neither accuracy nor precision.

It wouldn't be hard to invent a device that promises to generate free energy, and get people to agree that the water is a little warmer after being "heated" by the device. As long as no one measures anything, especially not temperature or power output, it's always possible to make false claims like this. But such BS is only possible in medicine, no other profession has fallen for such dumb stunts in decades because they are accountable. No one can spend someone else's money on BS and keep their job in the real world.

But they haven't seen anything yet, they opened Pandora's box here and it's not going to get any better. If anything, one constant pattern we have seen over the years it's that standards keep getting lowered and lowered so that an artifact of poor methodology can be claimed to be a relevant signal out of random noise.

The best example is IAPT, where they made specific claims that were entirely delusional. They invented a fake problem in multiple steps: 1) exaggerating costs for vague untestable concepts like anxiety and depression, 2) attributing those costs to those vague untestable concepts, then 3) asserting that for the cost of about £1B per year, they could "save" half of £12B, by claiming baselessly that they can boast 50% recovery rates in their biased artificial controlled experiments where they controlled everything, up to the final evaluation. Only the expenses are real, the savings are completely fake.

Because those standards cannot raise, ever. They have to keep getting lower and lower, in fact, as growing use will demand actual scrutiny. Especially as massive failures like IAPT have to face reality, after having lowered standards some more, they are currently simply avoiding accountability by simply hiding everything. It's not being audited because it would reveal the whole scam.

What they created here is a formula that allows to launder any pseudoscientific BS and makes it seem credible, by sheer quantity and repetition. The standard BPS formula can make it seem like healing crystals, snorting gummy bears or singing to the Moon, can improve anything by the mere claim of "helping", which is not a real or valid standard in either science or medicine.

But even that formula doesn't work, the standards have to keep getting lower and lower or it reveals the whole scam. As the standards keep getting lower, it will be even easier for people to show that any pseudoscience or alternative medicine out there is just as good as conventional medicine, since they simply reattribute benefits to the mere vague concept of "helping". Helping at anything, it literally doesn't matter. The primary losses are real, the secondary benefits fake.

The placebo is not part of the problem, it's not even a real thing. The problem is a turd-polishing factory process that produces polished turds out of literally anything. The combination of the biopsychosocial ideology and evidence-based medicine has effectively created the perfect pseudoscience: it is entirely devoid of any substance, because the process itself is the pseudoscience. It's indifferent to input or output, or anything in-between.

It's easy to predict what the future holds here, because we are it. When the evidence is debunked, they will just ignore it. The mountain of BS evidence the rely on will remain published, they will simply continue to selectively cite it, while at the same time saying that they know better by experience anyway so it doesn't matter.

We've seen episodes where if someone dares follow the normal process expected of science, like when Cochrane decided to unpublish the exercise review, they are attacked, openly and no doubt privately behind closed doors. We've also seen that when the evidence gets debunked after years of claiming that the evidence is indisputable because the trials are the evidence, they simply state that randomized trials are not possible here... because of the placebo.

Which is their whole thing, they are simply abusing the inaccuracy that comes from adding multiple fuzzying lenses on fuzzy data. But the only way this can be sustained over time is by simply eliminating any and all standards, making the whole process of EBM a pseudoscience-laundering factory that will make it easy to claim that swinging jackets at people cures their cancer.

Ernst doesn't seem to understand the problem yet, seems to think this is fixable by methodological changes, unaware that any such methodological changes will simply make the "evidence" disappear, which is obviously unacceptable for the industry. The standards can only get lower over time, it's the only way it established itself. Inevitably, the means become the ends. Lying to achieve a desired outcome requires to lie constantly for however how long the scam holds.

Basically they painted themselves in a corner, where the only way to keep going further is by allowing anything and anyone to claim the same thing they do because, in the end, the substance is irrelevant, the effect is an illusion anyway.

Agree on the placebo being a bit of an emperors new clothes we've allowed them all to get away with for too long. No proof it is 'all in the mind of the patient', normally it is a trial effect - manipulation that requires and involves many people's behaviour, choices, set-ups and promises of pros and cons.

In essence having the concept of 'something' is important along with the blinding because the important bit really is that subtraction process and all people involved not knowing who is in which arm - it keeps them honest by knowing that might be someone who is a 'subtractor' rather than an 'addition'.

And I remember watching a programme on a Parkinsons trial years ago, it clearly working for a number of those participants but at the end it missing getting to the next stage because it was 'just short' of the % it needed. As those on a trial will have the condition they will 1. want it to work, and 2. more than likely have been informed of this 'high bar' and how therefore every % counts, how awful if it's great and you umming and ahhing over the 6 or 7, or your blood pressure being 5 more than it might have been if you had been more rigid with your diet and cut out your donut when the cakes went round at work etc...

To infer it is subconscious 'power of the mind' from the patients never seemed to be questioned. It suited physicians and various innate ideology/power assumptions about 'other people' it must have been their mind and not looking to themselves and as long as the whole thing was subtracted and blinded who needed to correct that argument. Or to actually study the real pressures, nudges, mechanisms and techniques at play. Although I'm sure subjects like business (market research agencies) where money is made on being properly sure that answer is correct have probably got a literature and methodology-lessons that could just be wholesale moved across.

 

[Barry]

The problem isn't the placebo effect, or its nocebo twin, because it doesn't even exist, it's nothing but an artifact of not measuring things with neither accuracy nor precision.

I didn't think that to be the case. I thought the placebo effect really is something tangible, albeit potentially transitory, and that one of the reasons for needing properly controlled trials is to distinguish between the effects of the intervention versus possible placebo effects.

 

[unicorn7]

The placebo effect is mostly "regression to the mean". So in fluctuating disease the placebo-effect can be very big. Plus the effect we are seeing in the PACE study, where people want to please the therapist or doctor or report their subjective complaints differently.

I do think the positivity of something being done, having a new drug, being in a trial etc, can get you to report your symptoms differently. Sometimes even clearly thinking about your symptoms, can change how you report them. How do you even know the different between a painscore of 7 or 8?
I know I do that, that's why I keep track of objective scores like step count or how many hours I can work etc. Still doesn't count for everything, because I can even up my stepcount temporarily, but not in the long run.

 

[Helene]

I've had a friend explain to me that the placebo effect shows the power of the mind to heal ourself and illustrates how a positive attitude is essential for healing. I think this is quite widely believed.

 

[rvallee]

I've had a friend explain to me that the placebo effect shows the power of the mind to heal ourself and illustrates how a positive attitude is essential for healing. I think this is quite widely believed.

It's basically the last remaining bit of magic that isn't laughed at in a serious setting. And it's the fact that it's believed officially by the medical profession that allows this nonsense to continue. In time this will be canned in the same category as the humours, it's roughly the same underlying thinking anyway.

People love magic, it's normal to want things to be special, to be more than what they appear. This is just an extension of the same desire. If superpowers or things like that were real so many people would lose their shit and try to be part of it, whatever it takes, even many serious people who are scientifically-minded.

 

[Trish]

I think the placebo effect can show up as improvement on subjective outcomes, but I haven't come across it having an effect on biology or objective measures of function, except I imagine it might have a temporary effect on something like stress hormones, if thinking they are getting better reduces stress.

There's that asthma study that showed those who used the placebo inhaler reported breathing better than those who had no treatment, but objectively their breathing test showed it the placebo hadn't actually improved their breathing as the real inhaler did. They just thought they were breathing better.

 

[Creekside]

One solution is to require 'placebo effect treatments' to include a disclaimer such as: "Works just as well as snorting gummy bears! <or some other obviously silly treatment>."

 

[bobbler]

I think the placebo effect can show up as improvement on subjective outcomes, but I haven't come across it having an effect on biology or objective measures of function, except I imagine it might have a temporary effect on something like stress hormones, if thinking they are getting better reduces stress.

There's that asthma study that showed those who used the placebo inhaler reported breathing better than those who had no treatment, but objectively their breathing test showed it the placebo hadn't actually improved their breathing as the real inhaler did. They just thought they were breathing better.

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2770651

I think this is where people are trying to head in some areas.

"Conclusions and Relevance The findings of this study suggest that improvements in clinical outcomes among participants randomized to placebo were not limited to subjective outcomes. Even if these findings could largely demonstrate a regression to the mean, they should be considered for future trial design, as unexpected favorable placebo responses may result in a well-designed trial becoming underpowered to detect the treatment difference needed in clinical drug development."

If you look closely there is a lot of - well the methodology and literature doesn't really position us to draw any conclusions on this.

You can imagine how I found this and what I was googling, and why it made me pause for thought?

 

[Snow Leopard]

You can imagine how I found this and what I was googling, and why it made me pause for thought?

Figure 1 shows that the claim of placebo benefits for CRP and ESR is probably just a combination of noise and regression to the mean. Several of the trials had no change, so it is not a consistent benefit.

 

[Sean]

the amazing ability of a simple sugar pill or other non-pharmaceutical “fake intervention” to improve someone’s quality of life.

1. There is no amazing ability.

2. By "quality of life" he means short-term, highly manipulated, subjective self-report measures, without confirmation by adequate blinding or objective measures.

There is no substantive body of methodologically rigorous evidence that confirms the placebo/nocebo effect has sustained clinical significance.

That's the gorilla in the room that medicine is doing everything it can to avoid accepting and dealing with.

 

[Art Vandelay]

I'm surprised it took this long for someone to notice, but Ernst isn't seeing the forest for the trees here. The problem isn't the placebo effect, or its nocebo twin, because it doesn't even exist, it's nothing but an artifact of not measuring things with neither accuracy nor precision.

Spot on. Ernst (and all his gullible mates in medicine who believe in pseudoscience) are the problem.

 

[Snow Leopard]

Spot on. Ernst (and all his gullible mates in medicine who believe in pseudoscience) are the problem.

Ernst is generally quite skeptical and scathing of alt-med and sloppy methodology.

 

[Art Vandelay]

Ernst is generally quite skeptical and scathing of alt-med and sloppy methodology.

I agree. But from what I've seen, he doesn't apply the same scepticism that he has for alternative medicine to psychology and psychiatry.

 

[cassava7]

It seems to me that the problem with most proponents of the placebo effect is believing that it lasts over time. As pointed out, it can work in the short term on subjective outcomes (e.g. a small to moderate effect on relieving stress or pain) but it vanishes quickly — it is nothing more than a distraction. This is evident from trials that show that improvement from placebo therapies is not maintained at follow-up. I have not seen Ernst address this to this day.

Edit: even when there is sustained improvement at follow-up, the most simple explanation would be a spontaneous improvement in the condition itself, especially if trial arms aren’t matched well on disease severity and/or on other factors that affect the disease to begin with, rather than a sustained placebo effect. Replication would most likely fail.

 

[hinterland]

May 9, 2019 Placebo: Can the Mind Cure You?

https://gimletmedia.com/shows/science-vs/5whgzd

There was some interesting stuff here in this podcast about how a conditioned response to a uniquely flavoured drink could produce measurable changes in immune function… weird!

 

[Art Vandelay]

There's a good thread discussing the myth of the placebo on the forum here:

Placebos in clinical care: a suggestion beyond the evidence, 2021, Maher et al

Just like the BPS research there is a complete failure to understand how human nature affects experiments.

For Dr. Maher, this raised a red flag. When placebos work at all, he said, it is through deception, creating an expectation of benefit in the patient’s mind. As he trawled through the research, Dr. Maher found that open-label placebos’ reported benefits were often artifacts of the same methodological error highlighted by the Danish researchers in 2001.

 

[rvallee]

As a general principle, when the main argument is in the form of "isn't it possible that?", there is no argument. Almost every framing of the biopsychosocial model is in some form of "can be conceived as" or "may explain" and other vague affirmations that fall extremely short of scientific standards. They allude to the mere possibility of something, which is then attributed as the only explanation without any basis.

Science tries as hard as possible to account for all other things being equal when something is being studied. Psychology completely dispenses from this principle, just as they dispense themselves from the normal rules of trials because active interventions trying to manipulate people can't be blinded or controlled for. They'll accept standards they wouldn't in medicine, then use those lower standards to overrule high standards. It's this misuse that makes it so bad, this is a human failure, not a technical one.

No surprise stuff like this comes out. There are simply too many factors at work here. It really makes studying this hard, but obviously dispensing from any standards is not a serious solution to this. That it lead to absurdly silly claims such as "it's conceivable that participants in PACE undertook their own CBT & GET and this is what helped them" should have been a wake-up call that this is clearly unscientific.

But magical thinking, though. So damn alluring and powerful.

 

[Barry]

So why is it that double blinded pharmaceutical trials with objective outcomes, still have to control for placebo effects?