
A new hypothesis in medicine: give patients drugs they know don’t work - pella
https://www.vox.com/science-and-health/2017/6/1/15711814/open-label-placebo-kaptchuk
======
msandford
I know a lady who was managing a convenience store / pharmacy who eventually
quit and became a reiki healer. Prior to this kind of study any _real_
scientist would _know_ it's total garbage. But somehow she makes a living
doing it. Is it all duping? I suspected not.

In my mind what people who paid her were getting was something that they
almost universally can't get inside the traditional medicine system here in
the US at least, someone who cares.

Most encounters with doctors here in the US are 10 minutes or less at least
for an office visit. If you have a lot of symptoms or back-story or whatever
the doc might cut you off and ask questions and keep directing the
conversation rather than hear you out. That might be an efficient use of their
time, but it's not good for the placebo effect to work because part of that
seems to be caring, wanting the patient to get better, doing things (even
things we _know_ won't work) to help.

This lady has I think only hour long appointments which are totally unheard of
in the traditional system. It's not surprising that if the placebo effect is
real that seeing someone who can really only _care_ (or at least pretend to)
could be effective.

~~~
tathougies
Auto immune diseases are all untreatable and severely reduce quality of life
in some cases. One thing proven to slow their progress is stress reduction.

As you can imagine, being less stressed is really hard when you have a chronic
illness. This is exacerbated by doctors ignoring you. Having anyone spend an
hour to help you in any way is such a relief. I wouldn't be surprised if this
played a large role.

As another example, my wife and I have had six miscarriages. We're 25 and both
healthy and the many doctors we've seen agree. Well if the doctors don't have
a diagnosis, they don't wanna see you.

When it comes to recurrent miscarriage, there is no treatment. They suspect
there are likely auto immune diseases we don't know about. Indeed, this seems
likely. Most studies on potential treatments cannot be reliably replicated.
The only thing that has been shown to reduce miscarriage risk in future
pregnancies is tender loving care-- having a doctor who will talk with you for
hours whenever you want, and being taken care of.

So now we see a new matronly obstetrician. She's a bit quirky but we feel like
she won't abandon us like the other doctors did. Her appointments are multiple
hours long, and she's happy being paged in the middle of the night when we've
found out we're pregnant again. At 5 am when you find out you're pregnant
after five miscarriages, nothing is more calming than a soothing voice on the
telephone

This doctor has also encouraged us to seek out alternate practitioners, like
acupuncturists and massage. She doesn't believe in their treatments working
per se (she's an md and is happy providing real treatments), but I think she
understands they these practitioners will at least make you feel calm and
taken care of. Whereas I used to laugh at people who would see them before, I
get it now.

When you have a medical condition that is chronic and there's no end in sight
and no cure available, you need a friend more than a doctor, and
unfortunately, there's not much overlap between the two

~~~
arkades
> Auto immune diseases are all untreatable

I think you mean "incurable." Not untreatable.

Otherwise, I sure wasted a lot of time memorizing immune modulators and
autoimmune disease treatment protocols for my board exams.

And yes, doctors' job is diagnosis and treatment. If for whatever reason
you're not a candidate for those two things, they have nothing to do for you.
This is like complaining your IT guy isn't there to support you when your PC
gets stolen by a house invasion. That's not what that relationship is.

~~~
MegaButts
You've really captured the essence of the pretentious doctor with this
comment. Bravo.

~~~
whatshisface
Honestly, I'd prefer a doctor that could look at me and say "Sorry, but you
shouldn't buy any more of my time." Being able to say when you can't do any
more is probably the _antithesis_ of arrogant doctors - what you really have
to watch out for is a pseudo-quack that will send you off on increasingly
strong medications with zero-approaching success rates without telling you!

~~~
arkades
He has half a point: my first comment was more glib than it needed to be.

But, yes, docs who take your money to pat you on the head rather than admit
they can't help you aren't doing you any favors. Most docs are more ethical
than that (and then get lambasted for "not wanting anything to do with you if
they can't treat or diagnose you.")

------
gehwartzen
From the actual trial: "Patients were randomized to either open-label placebo
pills presented as “placebo pills made of an inert substance, like sugar
pills, that have been shown in clinical studies to produce significant
improvement in IBS symptoms through mind-body self-healing processes” or no-
treatment controls with the same quality of interaction with providers."

Sounds like they didn't give them pills that the patients "know don't work" as
the Vox title states, but instead told the patients that trials showed that
these pills did work just not through a chemically induced action.

~~~
comex
But that's the truth, isn't it? From a scientific perspective, it might be
interesting to see how well the placebo effect holds up if patients literally
think it won't work, e.g. by selecting participants who haven't heard of the
placebo effect, and not informing them. But from the perspective of helping
people, if the placebo effect is to some extent caused by knowledge of the
placebo effect, so much the better; there's no deception in that.

------
anonymous2017
A data point from my personal experience: 15 years ago I started developing
acute dysphagia (difficulty swallowing) which eventually got so severe I went
to see a doctor about it. It was diagnosed as acid reflux, and I was
prescribed proton pump inhibitors. That seemed to help for a long time, but a
few years ago the symptoms started to return. They got so bad that I went back
to the doctor, and this time was diagnosed with a newly discovered malady
called eosinophilic esophagitis (EOE -- [http://www.aaaai.org/conditions-and-
treatments/related-condi...](http://www.aaaai.org/conditions-and-
treatments/related-conditions/eosinophilic-esophagitis)). EOE is an allergic
reaction in the esophagus, which made sense because the initial symptoms
appeared shortly after we got pets -- a dog and a cat -- for the first time,
and I'm allergic to both. Case closed, or so I thought.

A few months ago, despite the fact that both or dog and cat had long since
died, my symptoms started to come back worse than ever. Things got so bad that
at one point I was actually heading to the emergency room (I never made it
because before we got there I threw up, which fixed the immediate problem).
But that episode scared me enough that I made another doctors appointment.

There followed a truly bizarre confluence of circumstances: first, my wife
fell down and broke her arm. Then my doctors office called to confirm my
appointment, but my wife picked up the phone and thought it was her doctors
office calling about her arm. She thought the appointment was for her, but she
hadn't made an appointment, so she told them the appointment was a mistake an
they should cancel it, which they did. I called to reschedule, and that
delayed it for another few weeks. The day of my new appointment, my doctors
office called and said they were running hours behind because of computer
problems and needed to reschedule again. Bottom line: it has been several
months now and I still haven't been able to see a doctor.

But here's the punch line: in the intervening time, my symptoms have
_completely_ disappeared. If I had been able to see a doctor, I would almost
certainly have ascribed this positive outcome to any intervention she would
have done. And yet there has been no intervention, but only because of these
weird twists of fate that kept me from seeing my doctor. Moreover, I _know_
there has been no intervention. And yet I suddenly feel better than I have in
15 years. It's really weird.

~~~
xherberta
_" The great secret, known to internists and learned early in marriage by
internists wives, but still hidden from the general public, is that most
things get better by themselves. Most things, in fact, are better by
morning."_

\- Lewis Thomas, The Lives of a Cell (Among other achievements, he was dean of
Yale Medical School and president of Sloan-Kettering. This collection of
essays was published in 1974 and is absolutely prescient and fascinating - he
offers profound thoughts on the nature of science, computing, and medicine
that have stood the test of time astonishingly well.)

~~~
anonymous2017
But that't the whole point: for fifteen years it _didn 't_ get better on its
own. In fact, it got progressively worse over a period of months and years.
When things got really bad (like on-the-floor-writhing-in-pain-wishing-I-were-
dead bad) I went to see a doctor. The doctor did something (meds, endoscopies)
and _then_ things got better, and they'd stay better for a few years before
they slowly, steadily, and inexorably got worse again. This cycle repeated
itself three times in fifteen years. This most recent episode was the fourth
cycle.

What makes this last episode interesting was that fate intervened to force me
to do a control experiment, and the outcome has been dramatic: I feel as good
(if not better) than immediately after all the prior interventions. In 15
years I have _never_ had that happen if I just did nothing.

~~~
xherberta
Wow! I did somehow miss the 15 years aspect. Mysterious. I'm glad you're
feeling better.

~~~
anonymous2017
Thanks! Me too! :-)

------
carapace
In the late 70's there were a couple of guys who tried to bring placebo pills
to market. They had a bottle of sugar pills and a little booklet that listed
all the various things placebos had worked for along with the percentage
effectiveness. If you had something that the placebos weren't that effective
for, well, you just took more...

The FDA wouldn't go for it.

------
amelius
> People on no treatment got about 30 percent better. And people who were
> given an open-label placebo got 60 percent improvement in the adequate
> relief of their irritable bowel syndrome.

There's a few differences between these groups:

\- People on the placebo pill were reminded about their illness at least once
a day (when they took the pill), and can be expected to have special attention
for their illness.

\- People on the placebo pill were seeing a doctor, and had the prospect of
going back to the doctor to evaluate their progress.

\- For people NOT on the placebo pill, all hope was basically lost.

So perhaps "hope" (however small) is the underlying psychological effect
causing this, or perhaps it's the attention from self.

~~~
Jill_the_Pill
This echoes the negative effect of praying for the sick. Those who were prayed
for feared their conditions were serious enough to warrant prayer and lost
some hope. Perhaps if you are given a sugar pill, and are told it's only a
sugar pill, you also relax about the threat of your condition -- well, it
can't be that bad!

~~~
_Microft
I can't find a reference for the following at the moment but there was
something about the perceived health being a far better indicator for life
expectancy/longevity than the actual health. The mindset of the patient seems
to matter a lot!

------
hannob
This isn't so new, a major study lots of this is based on was published in
2010. Here's a skeptical look at that study:

[https://sciencebasedmedicine.org/placebo-effects-without-
dec...](https://sciencebasedmedicine.org/placebo-effects-without-deception-
well-not-exactly/)

~~~
pella
>a major study lots of this is based on was published in 2010.

this is from 2016 Dec ( see "4.1 Limitations" )

"Open-label placebo treatment in chronic low back pain: a randomized
controlled trial."
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5113234/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5113234/)

 _" Conclusions Our data suggest that harnessing placebo effects without
deception is possible in the context of a plausible rationale. More research
on this possibility is warranted in cLBP and other conditions defined by self-
appraisal."_

~~~
pella
2 replays ( "Letter To Editor" )

"The effect of nothing? Time to abandon the concept of placebo" ( Traeger,
Adrian C.; Kamper, Steven J. )

Pain: June 2017 - Volume 158 - Issue 6 - p 1179

doi: 10.1097/j.pain.0000000000000884

[http://journals.lww.com/pain/Citation/2017/06000/The_effect_...](http://journals.lww.com/pain/Citation/2017/06000/The_effect_of_nothing__Time_to_abandon_the_concept.28.aspx)

( "open image in new tab" to read )

\--

"Are placebo pills presented as experimental treatment a true placebo?" (
Mestre, Tiago A.; Ferreira, Joaquim J. )

Pain: March 2017 - Volume 158 - Issue 3 - p 535

doi: 10.1097/j.pain.0000000000000793

[http://journals.lww.com/pain/Citation/2017/03000/Are_placebo...](http://journals.lww.com/pain/Citation/2017/03000/Are_placebo_pills_presented_as_experimental.21.aspx)

( "open image in new tab" to read )

~~~
DanBC
Your links give a 403 permission denied error.

~~~
pella
thanks, I replaced the links to the original page.

------
anotheryou
I wonder how far you can go with this. I mean, there is a huge scale from
homeopathy ("I know this does not work, but some believe in it"), things
labeled placebo and administered by a doctor, smarties in a pill bottle and
buying someone a candy bar and saying "here, that will make you feel better".

I'm pretty sure I know a few cases of self-administered placebos. When you are
sick everyone has the wondercure, be it healthy food, some natural bee-wax-
antibiotic, homepathy, "it's all just psychosomatic"/"there is allways a
deeper reason for a sickness" or what not.

They probably all just need someone to bring camilla tea and a wet cloth for
on the forehead :)

~~~
jbmorgado
The thing is, homeopathy claims to heal all kinds of illness (cancer for
instance), while the author of this study leaves it very, very clearly that it
only works on the perception of illness by the mind.

He clearly states that the placebo won't work in quantifiable illnesses
because those quantifiable effects don't depend on the perception from your
brain.

------
fragsworth
If a licensed professional gives you a placebo for your illness, they're also
effectively saying it's not that important to worry about, which changes the
psychology of the patient.

~~~
kem
... this is like walking through a minefield, but here it goes.

A lot of the illnesses they're talking about in the article, like IBS, lower
back pain, and CFS have a strong psychosomatic component to it for a lot of
people. They essentially say this in the article--something like "this won't
work for malaria, but it will work for pain."

This can be a really controversial position, and it gets really twisted by a
lot of people. No I'm not advocating mind-body dualism. What I'm saying is
that there's top-down influences on physical symptom perception and that
probably influences bottom-up processes, leading to some sort of vicious
circle.

I think a lot of these psychosomatic conditions are really explained by the
same processes involved in the nocebo effect. There have been studies to
support this, showing that psychosomatic patients report more nocebo effects
in control conditions than other patients and controls.

The idea you're discussing--reassurance effects--is interesting and actually
really understudied I think. However, I think there's an equally plausible
hypothesis, that you're kind of fighting negative psychosomatic effects with
positive psychosomatic effects in certain situations.

I don't think that's _all_ of the placebo effect, but I do think there's some
broader causal system involved that encompasses placebo effects, nocebo
effects, and psychosomatic illnesses and effects, including more psychosomatic
psychiatric conditions (e.g., conversion disorder, psychogenic seizures,
etc.), as well as psychological effects on disease process (e.g., stress
effects on inflammation).

I kind of wish this area of research didn't get so bogged down with political
infighting, which invariably happens. Patients start insisting that we're
being dismissive by discussing psychosomatic processes, some researchers will
spuriously start criticizing other researchers for advocating Cartesian
dualism, as political smear tactic, when the real issues pertain to emergent
processes and top-down mutual influences. It's a very interesting area of
research with lots of potential, but tends to get oversimplified really
quickly to score political points.

------
nraynaud
Maybe that's what I need, I have residual headaches after a stroke (CVT). It
seems to be a common issue and it doesn't come from the head pressure.

~~~
maxerickson
What sorts of treatment do doctors suggest for that?

~~~
nraynaud
Just pain-killer or nothing if the pain is low enough. It looks like it is a
source of pain-killer overuse, and psychiatric issues. In my case the pain
responds very well, so I just treat it with paracetamol, but I have used just
8 doses in 3 weeks.

To put it in context, tho, it is an extremely rare kind of stroke (5/1,000,000
per year), so the select people having had this stroke might have pain
medicine issues, but it is not a contributor of anything in the grand scheme
of things.

------
ajanuary
I don't have the resources right now to condense the arguments or cite the
evidence, but the Skeptics with a K podcast [1] has recently done a whole
series on why the article and pretty much every other study mentioned in the
comments so far is not any evidence of "the mysterious power of the placebo"
but actually misuse of analysis on experimental biases. Well worth a listen.

[1]
[http://www.merseysideskeptics.org.uk/category/podcast/skepti...](http://www.merseysideskeptics.org.uk/category/podcast/skeptics-
with-a-k/)

------
bfirsh
Also, more expensive sugar pills work better than cheaper sugar pills. (And
bigger ones, colourful ones, etc). Presumably this means something like
homeopathy could work better than sugar pills.

It's easy to ridicule homeopathy, and it certainly shouldn't be used for
illnesses that are easy to treat. But, perhaps it could be a valid treatment
for chronic, hard to treat conditions. It's certainly very elaborate and
expensive.

~~~
_Microft
The bad thing with homeopathy is not that they're fooling people to take
substances that have no effect on their own and only work via the placebo-
effect. It's the "making a lot of money from sick people by selling expensive
placebos"-part that's despicable.

------
HillaryBriss
> _Thinking you’re going to get better is not what makes you better. That’s
> the mind-cure idea: It doesn’t happen. It’s not the way it is ... I’m a
> little bit of a standard deviation or two out from consensus._

This surprised me. I've been under the impression that the body's immune
system could be modulated by the brain. The science has changed underneath my
feet, I guess.

------
HillaryBriss
> _We have great drugs, but they don’t often treat symptoms that well. What
> really bothers people are the symptoms. The symptoms are things they can
> perceive that are modulated by the brain._

so, Kaptchuk's open-label placebo therapy appears to be centered on and
limited to a person's subjective experience of their illness. that's all this
is?

~~~
DanBC
> that's all this is?

But those things can be debilitating, so anything that helps without causing
harm is pretty important.

------
golergka
That's exactly why I take homeopathy medicine. I know that the science behind
it is pseudo; but I also know that placebo effect works regardless. At least,
on my particular sample size of one it definitely does.

~~~
michaelmrose
This is truly terrible advice and you ought to feel bad for promoting it here.

[http://whatstheharm.net/homeopathy.html](http://whatstheharm.net/homeopathy.html)

~~~
lisper
But he's not offering advice. He's offering a data point. There's nothing
wrong with that.

~~~
michaelmrose
[http://whatstheharm.net/homeopathy.html](http://whatstheharm.net/homeopathy.html)

~~~
qb45
I could swear I have already seen this link somewhere /s

Plus this article is a fraud. The people it lists were killed by ignorance,
neglect or their own informed choice, not by homeopathy. I don't think anybody
has yet died of drinking a small amount of water and the guy you are harassing
said nothing about giving up other treatments, just using homeopathy as
placebo.

~~~
michaelmrose
As controls are not as tight as you know real medicine several have in fact
died of homeopathic meds that contained far too much of the active ingredients

~~~
lisper
But then those homeopathic meds were _defective_. Being harmed by a defective
product is hardly unique to homeopathy.

~~~
michaelmrose
Why are you defending a sham industry designed to separate fools from their
money that discourages people from seeking real medical attention.

~~~
qb45
Dude, it's HN, barely anyone here seriously supports homeopathy.

The problem is that you are trying too hard to convince everyone. For me, if I
knew nothing about the topic, this in itself would be a huge red flag to
distrust you. Slow down and make sure to attack the right people for the right
reasons.

It's not true that all of this shit is low quality, I presume mainstream stuff
advertised on TV like Oscillococcinum might be safe. It's not obvious that all
of that is cynically designed to separate fools from their money, some of the
vendors may be cranky enough to believe it or at the very least they may see
it helping in some cases due to the placebo effect and conclude it must be
good then. And every time you say something others know for sure to be false,
you are undermining you own credibility.

~~~
michaelmrose
The thing I am attacking is an entire industry of con artists. Presuming
medical advice is good because you heard it on tv is amazingly poorly thought
out. Its as badly thought out for example as believing that the power of
positive thinking provided by a fake cure is enough to balance out literally
not knowing how to get good functional medial advice. In modern life where
everyone who doesn't crash their car into a wall will need competent advice to
reach their potential age this is a necessary survival skill long term.

Homeopathy is without exception useless nonsense. for example Oscillococcinum
is duck offal diluted. The logic behind its operation doesn't even make sense
in homeopathy land. Its the approximate equivalent of bad sci fi wherein
having made up some imaginary laws of physics the author can't even stick to
them properly.

I honestly don't know what algorithm you use to assess credibility. You
suggest that you are put off by strong opinions but reassured by hearing about
things on TV. You try to ascribe positive motives to modern day patent
medicine scammers but distrust the motives of people angered such deceit.

Consider refining your judgment.

P.S. What did I say that you "know not to be true"?

~~~
qb45
> Presuming medical advice is good because you heard it on tv is amazingly
> poorly thought out.

Never said that, only that mass-manufactured stuff widely used for decades
probably is safe or it should have been banned long ago.

> Its the approximate equivalent of bad sci fi wherein having made up some
> imaginary laws of physics the author can't even stick to them properly.

No argument here.

> You suggest that you are put off by strong opinions but reassured by hearing
> about things on TV.

Not really strong opinions but nagging and repeating things you've already
posted without a word of explanation. Also, you stated as a fact that
homeopathic drugs are of low quality without any sources or examples, it's the
first time I'm hearing about this, why should I believe it if this kind of
incidents aren't commonly reported afaik? At least dragonwriter was able to
provide some example.

> P.S. What did I say that you "know not to be true"?

Nothing, but others may. You say it's a sham industry designed to part fools
from their money, I know that there are people who religiously believe in this
stuff, therefore there may be vendors who believe it too, somebody may know
such vendors and then how does it make you look _to them_? And it's these
people you need to convince, I have never used, produced, distributed or
recommended homeopathic drugs and very likely never will.

~~~
michaelmrose
Cigarettes are mass manufactured and widely used for quite some time. Its
recently been found that some fake sugars may give you a massive boost to your
chance to have your brain rot via Alzheimer's. Asbestos was widely used
previously as was leaded gas was everywhere decades after it was widely known
how bad it was. Not being banned his historically been a really bad predictor
of safety.

I linked to a whole list of people that died or suffered via trusting
alternative medicine. Anyone wanting further info can check out
[https://en.wikipedia.org/wiki/Homeopathy](https://en.wikipedia.org/wiki/Homeopathy)

Honestly though one shouldn't need to fully explain that homeopathy isn't real
in the same fashion as its usually not required to explain why witchcraft,
literal magic, young earth creationism, or voodoo isn't real.

I'm not trying to convince anyone silly enough to believe, I'm trying to
discourage people from promoting it as benign.

------
pella
other interesting articles:

Changing Mindsets to Enhance Treatment Effectiveness

JAMA. 2017 May 23;317(20):2063-2064. doi: 10.1001/jama.2017.4545.

[https://mbl.stanford.edu/sites/default/files/crum_zuckerman_...](https://mbl.stanford.edu/sites/default/files/crum_zuckerman_jama_2017.pdf)

==

You can train your body into thinking it’s had medicine ( 09 February 2016 )

Jo Marchant asks if we can harness the mind to reduce side-effects and slash
drug costs.

[https://mosaicscience.com/story/medicine-without-the-
medicin...](https://mosaicscience.com/story/medicine-without-the-medicine-how-
to-train-your-immune-system-placebo)

==

The Vodka-Red-Bull Placebo Effect

People take more risks when downing caffeine-and-alcohol cocktails—but only if
they know what they’re drinking.

[https://www.theatlantic.com/science/archive/2017/06/caffeine...](https://www.theatlantic.com/science/archive/2017/06/caffeine-
and-alcohol-placebo/529641/?single_page=true)

==

Howe, L. Goyer, P., & Crum, A. (2017). Harnessing the Placebo Effect:
Exploring the Influence of Physician Characteristics on Placebo Response.
Health Psychology.

[https://mbl.stanford.edu/sites/default/files/howegoyercrum_h...](https://mbl.stanford.edu/sites/default/files/howegoyercrum_harnessingtheplaceboeffect.pdf)

==

Crum, A., Phillips, D., Higgins, T. (2016). Transforming Water: Social
Influence Moderates Psychological, Physiological, and Functional Response to a
Placebo Product. PLOS One, 11(11).

[https://mbl.stanford.edu/sites/default/files/crumetal_transf...](https://mbl.stanford.edu/sites/default/files/crumetal_transformingwater.pdf)

==

Crum, A. & Phillips, D. (2015). Self-Fulfilling Prophesies, Placebo Effects,
and the Social-Psychological Creation of Reality. In R. Scott and S. Kosslyn
(Eds.), Emerging Trends in the Social and Behavioral Sciences. Hoboken, NJ:
John Wiley and Sons.

[https://mbl.stanford.edu/sites/default/files/crumphillips_em...](https://mbl.stanford.edu/sites/default/files/crumphillips_emergingtrends2015.pdf)

~~~
msnower
Those seem to back up this quote by the doctor from the article: "What’s going
on in the patient’s [mind] is that the rituals of medicine... activates
specific quantifiable and relevant brain regions that release these
neurotransmitters. And they modulate symptoms."

For minor ailments for which there are no real cure (and are probably entirely
psychological) building a new habit covers up the old one and subsequently
cures the patient's pain.

