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Beware the Nocebo Effect
An article at the NY Times looks at research into the "nocebo" effect. Named after the placebo effect, it's the term for when patient expectations do harm, rather than good. "When a patient anticipates a pill’s possible side effects, he can suffer them even if the pill is fake." The article describes several instances of patients getting the placebo in a drug trial, but reporting the expected side effects of the drug, rather than the benefits or nothing at all. Quoting:
"Consider the number of people in medical trials who, though receiving placebos, stop participating because of side effects. We found that 11 percent of people in fibromyalgia drug trials who were taking fake medication dropped out of the studies because of side effects like dizziness or nausea. Other researchers reported that the discontinuation rates because of side effects in placebo groups in migraine or tension drug trials were as much as 5 percent. Discontinuation rates in trials for statins ranged from 4 percent to 26 percent. ... In one remarkable case, a participant in an antidepressant drug trial was given placebo tablets — and then swallowed 26 of them in a suicide attempt. Even though the tablets were harmless, the participant's blood pressure dropped perilously low."
No surprise here, the mind controls the body. Why wouldn't the placebo effect work both ways?
And even if I did, I wouldn't get my info about them from the freaking commercials that list off what it's for, the horrendous side effects, as it shows a happy family playing outside, and then says "ask your doctor..." WTF?
The US is the only nation that allows pharma ads, and they're really harming our society because people go to the doc and demand certain meds as a result of these commercials. Enjoy your diharrea, heart palpitations, mild depression and thoughts of suicide.
This all relates back to the article, as these nocebo effects are a result of stupid people taking advice from even more idiotic marketing people about what drugs they need, for fake diseases like restless leg syndrome, and miracle cures that don't work and just cause you to die like the numerous discontinued drugs caught up in class action lawsuits for wrongful death.
I was getting dizzy and sickly at the painkillers I never took an hour before.
I was sure I had taken them but nope, found them in my pocket about a half hour after that.
Boy I felt stupid.
I wonder if it's actually possible to commit suicide by swallowing placebos? Or is there some limit to the nocebo effect's severity that'd prevent that?
10 PRINT CHR$(205.5+RND(1)); : GOTO 10
I'm frankly not surprised that people who imagine diseases imagine side-effects from placebos.
And yet, supposedly, the effectiveness of placebos is rising. What does this tell us? Human beings are becoming more pliable / suggestive, which is not a good thing.
For one, that level of pliability is probably a prelude to something really horrible, the least of which is a Justice / Legal system that will operate in "sideways mode." Not a problem until you're convicted of something you didn't do. But if you make sure you are always wealthy / powerful enough, it shouldn't ever be a problem.
I am John Hurt.
"We found that 11 percent of people in fibromyalgia drug trials who were taking fake medication dropped out of the studies because of side effects like dizziness or nausea". Aren't these also symptoms that fibromyalgia victims suffer? Could the participant merely be confusing a "side effect" with "fake pill simply not working"?
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"he can suffer them even if the pill is fake."
by 'them' they mean non specific symptoms, then yes.
The Kruger Dunning explains most post on
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Half of kids with ADD actually makes perfect sense to me.
We didn't evolve to what we are now by maintaining a daily routine of sitting in a desk for six hours staring at a teacher, then watching tv for four more, while fattening ourselves with concentrated sugars and hyper-processed foods of trade-secret fabrication.
Our diet and lifestyle are completely foreign to our evolution, and it's no surprise we're ADD, or diabetic, or just generally mental.
Actually, most folks I know who said they have fibromyalgia have been misdiagnosed because they had non-standard symptoms for some other condition. Fibromyalgia just seems to be a catch-all for when they have some symptoms in one area and they can't figure out what else it could be.
If one believes that advanced human evolution will include the ability to control bodily processes with one's mind, including healing and maximization of performance, then it's also quite likely possible for it to work the other way.
Happiness in intelligent people is the rarest thing I know.
Ernest Hemingway
They are so gullible that they will believe anything, even that they have upset stomachs (even when they don't). Or that Lush Rimbaugh is right. Or that celltowers are the cause of their headaches even if the tower is turned-off & the headaches are caused by other issues (like staying-up til midnight).
My AC stalker: " I personally agree with your posts most of the time, but that won't keep me from modding you troll"
Fibromyalgia isn't a disease, it's just a fancy word for muscle pain.
It really means the doctor couldn't come up with a good diagnosis but they needed to call it something to get the patient out of their office.
Up until now, when my doctor prescribed something for me, I always looked at the datasheet the pharmacist gave me and sometimes looked the drug up on the NIH website to find out about the side effects. I am somewhat suggestible; would I be better off not looking at drug information lest I get psychosomatic side effects? I can see some potential problems, like dying due to my failing to read some other crucial parts of the datasheet.
"Imaginary solutions to real problems."
I'm 100% with you there.
Required reading for internet skeptics
Back when I was a kid "ADD" was called "boredom". So we discovered ways to not be bored:
Like paying eraser cars inside our desk.
Or doodling on a page.
Or reading a book.
Or staring at the girl's sideboob at the next desk..... ooops, no my mistake. That was just today.
My AC stalker: " I personally agree with your posts most of the time, but that won't keep me from modding you troll"
Wait, you mean people who suffer from fibromyalgia, a "disorder" that more often than not has no rational explanation by medical professionals, and happens disproportionately to people who tend to have some sort of other mental disorder like borderline personality disorder or who suffer from what I like to call "crazy cat lady syndrome", might be more likely to experience a negatively-skewed placebo effect? You don't say!
Some people actually think Homeopathy is NOT a completely retarded concept.
He gives a wonderful explanation of the Nocebo effect in this video of Nerdstock: 9 Lessons and Carols for Godless People, televised on BBC4, December 2009. https://www.youtube.com/watch?v=O1Q3jZw4FGs
Fibromyalgia is real. Its really a psychological disorder, demonstrated by the fact that the standard treatment for it is some sort of mood stabilizing drug.
Its like the people who get all itchy when they see a cell phone tower. The tower might very well be inoperative (as was demonstrated by a study done in the UK). But they are driven to their symptoms by the belief that R.F. is coursing through their bodies. That doesn't make the symptoms any less real. It just makes the people suffering from them delusional.
The question is: Do we have to humor such sufferers by moving them to R.F. quiet areas or lining their homes with tin foil? Or can we just tell them to either pick up their subsidized prescription of Zoloft or live with their afflictions?
Have gnu, will travel.
Research scientists have found substantially different fMRI results for fibromyalgia patients compared to controls, so... something exists. Obviously, they don't usually do an fMRI to diagnose, who knows how many people have been misdiagnosed, and like many things, there's a whole quack industry [lose 25 pounds with just three easy tips doctors don't want you to know!], etc., but if you're going to call a bunch of people scammers and fakers, at least some of whom are in lots of pain, at least keep up with the research, yes?
One possible explanation for a stronger nocebo effect with fibromyalgia is that, if I understand it correctly, the symptoms can vary substantially day to day and over time. If a patient has some dizziness occasionally, it could be very hard to tell whether a new medication is causing a specific bout of dizziness (especially if there are multiple variables at play). If (not a real example) you have a group of people who have dizziness in approximately one out of four days, and then give them a placebo which they think can result in dizziness, then about one in four of them will experience dizziness on the day they start the drug. If they decide that the chance the dizziness might be caused by the drug is greater than the benefit of remaining in the clinical trial (and if they're on a placebo, they're probably not experiencing any benefits from the drug), then they're going to drop out.
Stress can also cause interesting symptoms in many people (clammy hands, racing heart, nausea; think stage fright), so some nocebo effects could be due to nervousness about trying a new medication. Others may be partly due to reporting bias (i.e. the non-placebo example of erectile dysfunction given in the article: if you didn't know erectile dysfunction could be caused by the drug, and you happened to have a few experiences of that sort, would you really want to mention it to the doctor, either for embarrassment or for don't-think-it's-relevant reasons?) or perception/selection bias (if you're on the alert for, say, itchy legs, you're going to notice/remember any itches more than you normally would and it's more likely to seem greater than normal).
But also, the brain is weird. And the blood pressure plummeting one is extra-weird.
The US is the only nation that allows pharma ads
You should travel more.
Mit der Dummheit kämpfen Götter selbst vergebens
Hmmm. Dizziness and nausea, eh? I'll bet those affected patients probably live too close to a wind turbine. According to many people (and most of the rural news media) here in eastern Ontario (Canada), dizziness and nausea are "known" side effects of industrial wind turbines. Not to mention other symptoms like sleep disturbance and anxiety. Who needs a placebo to explain their symptoms? Proof by popular opinion! But not in my backyard, they say.
This seems to be it, it's a guess as to something that fits some symptoms but has no known cause. Researchers and the medical community need to be clear they're talking about the same disease when they try and study it, so someone makes a mostly wild guess, sticks a name on it, and off you go. Cancer is actually a lot like that, there are probably a dozen different types of cancers (viral, environmental etc.) but they're all called cancer because they're symptomatically similar.
A few years ago there was a disease names "SARS". SARS stands for: sudden acute respiratory syndrome. As thought that conveys anything helpful.
There's definitely something wrong causing people to have various pains and so on, but no one knows specifically what it is, so they called it fibromyalgia because that makes the person who named it, and people who use the phrase sound like they have a clue (just like SARS!) even when they don't.
"Named after the placebo effect, it's the term for when patient expectations do harm, rather than good."
With other news about Nokia selling out to a patent troll and Google patenting a 'Net-based OS, I thought this was yet another article about patents: "It's the term for when *patent* expectations do harm, rather than good." Mabye our patent system is in dire need of a cure?
NEO: I thought it wasn't real.
NEO: If you are killed in the Matrix you die here?
MORPHEUS: The body cannot live without the mind.
So, DONT tell the patient that side effects include death, OK.
I think it is "remarkable" that a subject in an antidepressant trial was given placebos, and attempted suicide. That seems a rather poor situation to put a depressed person in.
For my wife it was at first wondering why, with her lower back and legs in pain and numbness due to blown disk, her hands were also numb. After a few weeks on constant painkillers for her back, when those came down she found she was constantly fatigued, and with skin that felt like she had a 2nd degree sunburn over her whole body. And numb hands.
Are you proposing that, while her back was in excruciating pain, she chose to imagine that her hands were numb? Why would she go to the bother? It seems perfectly reasonable to me that nerve cells can misfire or nerve receptors can respond to the wrong or nonexistent signals, in the same way that brain cells can misfire in epileptic patients. They're all the same basic cells.
Having the treatment be a mood stabilizing drug makes sense as well, then in that they mess with the brain's ability to process nerve signals. While my wife was on it she would tell me that she felt "stupid" because she just couldn't think as quickly or as well as before. We got her off of that as soon as possible.
It doesn't hurt to be nice.
Inert means inert, yes.
On the other hand, "inert ingredients" means ingredients that show up in a list in a standard as being supposed to be inert when used in a specific way. Thus, YMMV.
Computer memory is just fancy paper, CPUs just fancy pens with fancy erasers; the 'net is just a fancy backyard fence.
I wonder if it bothers the people responsible for the antidepressant study that someone seeking help for depression was given placebos and tried to commit suicide. What if he chose a more effective method?
Anecdotal, and first/second person from me is third person to you, but, ...
Not sure if your 1/10 gram matches the actual amount in a placebo, but the amount of sugar in a non-placebo pill can indeed have bad effects on someone with sugar reactions, including liver and kidney function.
We know that it can have a significant effect on a diabetic person, as well, so there's no need to fuss about the amount.
When someone in the family is sick and claims sugar intolerance, does it do any good to argue whether sugar intolerance is real?
Seriously. Let the person cut back a bit on sugar, even if it means having, for instance, to make one's own biscuits because you can't get sugar free bread in the store. It's not a whole lot of trouble to go to, and home made biscuits are not particularly evil, either. Might even taste good after a bit of practice making them, adjusting the recipe, etc.
Which is on-topic here, because we too often get too involved in arguing about science when the best thing we can do for someone who is sick is just listen, express sympathy and support, and if they think of something sensible to do, encourage them to do it. (Again, for most people, cutting back on sugar is quite sensible.)
Shoot, sympathy and support are often better medicine than anything the doctor can prescribe. Can promote communication, too.
Computer memory is just fancy paper, CPUs just fancy pens with fancy erasers; the 'net is just a fancy backyard fence.
Untreated priapism can have adverse affects on male sexual performance
http://en.wikipedia.org/wiki/Priapism#Complications
Unless there already is some treatment for the condition. Withholding such treatment is a violation of medical ethics.
For the patient to get better, they have to want to change;
"Patient has to want to change" is a shorthand/metaphor for "a patient has to accept the existence of a problem, and in order to find the cause of it so it can be treated, he or she must openly discuss the problem and the underlying issues with a trained professional".
But when I take a antibiotic, it either works or it doesn't.
Weeeell...
Elevated stress can cause an increase in production of stomach acid, which can inhibit certain antibiotics, when taken orally.
More like "thinking positive" than "believing", and weakening the effect than "not working" but you get the picture.
Mit der Dummheit kämpfen Götter selbst vergebens
Does this mean that the side effects are reported in relation to the placebo reported side effects, i.e. if 5% hurl on placebo, and 6% hurl on the med, does it get reported as a 1% hurl result?
The funniest part is that they often say "If you have been injured or killed by" such and such drug.
So if there is placebo side effects, there can now be lawsuits over taking almost nothing. Litigation paradise!
The shepherds did so well protecting the flock that the sheep no longer believed that wolves existed.
And in turn, they would have indeed committed suicide by placebo.
That would be death by placebo TREATMENT, not by placebo EFFECT.
A neutral, non-sugary, placebo pill would create the same placebo effect, but it would not trigger a high blood sugar reaction in diabetics.
And I do believe that we are talking about the effect, not the treatment here.
Cause, one could just as well choke on a placebo pill and die from a placebo treatment.
Or slip on placebo pills spilled on top of the stairs and break one's neck.
Or get run over by a truck transporting placebo pills.
Or shot by a placebo merchant who paid for the gun and bullets with money earned by providing placebo pills to various studies.
In none of those cases would the patient/victim experience the placebo effect.
Mit der Dummheit kämpfen Götter selbst vergebens
Actually, most folks I know who said they have fibromyalgia have been misdiagnosed because they had non-standard symptoms for some other condition.
Could you share with us those "other conditions" that are misdiagnosed as fibromyalgia?
Because I have a very good friend who was diagnosed at a very young age with arthritis, fibromyalgia, and restless leg syndrome.
This friend has been tested for everything under the sun, but maybe you have some insight that I can share with them.
[Fuck Beta]
o0t!
After a few weeks on constant painkillers for her back,
The non-specific pain could have been a symptom of addiction to the original painkillers.
Have gnu, will travel.
Let me add my voice. As a person with a medical background, and being personally acquainted with "Fibromyalgia" I can tell you that it's a NON-DIAGNOSIS. It is "a diagnosis of exclusion", (read up on it in CURRENT if you don't believe me,) meaning it's what they say you have when they can't find anything wrong with you.
It is just possible that SOME Fibromyalgia sufferers have an underlying pathology, but generally they don't. FM, as it's sometimes called is from Greek or Latin for "muscle fiber pain". It's like being diagnosed with "a cough". It says nothing about WHY the person is coughing and is therefore by definition a non-diagnosis. The origin of Fibromyalgia is that some doctors did a study a few years back, and realized that telling people who have a passive form of Munchhausen's that is indistinguishable from Hypochondria is NOT helpful to them, so they made up a new "disease" and called it Fibromyalgia.
It is also JUST POSSIBLE THAT MAYBE, recategorizing Munchhausen's patients and hypochondriacs as "Fibromyalgia" sufferers also allowed the medical/pharmaceutical complex to do something it couldn't before they started calling it by this new name, namely TREAT IT. Or at least PRETEND to treat it and reap even higher profits from credulous fools.
They have FM medications now. Get that? They have medications for what any real doctor will tell you they (doctors everywhere) have NO IDEA WHAT CAUSES IT, or even what MIGHT be going wrong. I think the medication is called Placebex, or Glucosome or Bullshinein HCl 5% solution, or something like that.
Before you start firing back because you or someone you care about is one of the poor, probably deluded fools who thinks this "disease" is real, let me assure you, I don't think the moon landing was a hoax, so lay off the ad hominem abusive and straw-man fallacy based attacks, I actually know what I'm talking about. You don't have to believe me, look it up in CURRENT. The real disease is the one where doctors humor patients by pretending their ailments are real, and pharmaceutical companies humor them too by making millions or billions of dollars for doing nothing.
...where they cite a placebo lowering the subject's blood pressure. And blood pressure is OBjective, not SUBjective.
And yes, in this case, you are scientifically inaccurate.
All I'm saying is that the study reeks of confirmation bias.
And since when is a single sample case anything but anecdotal?
Mit der Dummheit kämpfen Götter selbst vergebens
Lyme Disease, Lupus, Arthritis, and I've heard of folks whose 'fibromialgia' cleared up after they were treated for apnea.
There are lots of things that cause pain/fatigue, etc, and if you don't have other standard symptoms they also cause, could get you lumped in as fibromialgia because they aren't sure what else to do with you.
Or maybe they were allergic to some component of the placebo - such as corn sugar (a typical ingredient). Then they'd have REAL side effects.
Bantam Dominique roosters crow a four-note song. Once you've heard it as "Happy BIRTHday" you can't NOT hear it that way
Nah, sometimes it's the opposite problem, the body can trick itself into symptoms. As for the Upset Stomach, the throwup that you had to flush down the toilet wasn't fake.
However it wasn't due to the drug, it was due to the subject/patient over stressing about tertiary factors.
My first Journal Entry ever, in 8 years! http://slashdot.org/journal/365947/aphelion-scifi-fantasy-horror-poetry-webzine
I am sorry to disagree with the experts here, but I think they got it wrong. I merely object to the name 'nocebo effect'. What this article refers to is the placebo effect, you take something, believe it is the drug, and feel the effects of the drug. The name nocebo would be much better applied to the cases where the people get the actual drug, and believe it is a placebo, which can cancel out the drug's effects. Yes this is a purely semantic distinction, but if you think about it, I think you will find it is correct. Also moderators: I am amazed at what passes for 'insightful' these days. Have a little pride and remember it suggests that you didn't already think of it yourself when you give that moderation. The first post is evidence that we need '+1 the article is stupid and this comment points that out'.
The ASSUMPTION is that the patients experienced the effect, and it was all in their minds.
This is sloppy research. Did they check to see if the binders and fillers in the pills weren't to blame ?
How do you know that the patients weren't exposed to something else when they went to get their sugar pills ?
People need to be more skeptical of drug trials, the industry would LOVE to further damage criterion and methodologies and disclosure of adverse side effects from the constant stream of dangerous drugs it pumps out.
How many times does the FDA and big pharma have to be caught red handed screwing us over before you start to question the entire corrupt research community ?
Even more interesting (to me) is the fact that placebos tend to work even if the patient is aware that they have ingested a placebo. The placebo effect and activities of mirror neurons are still very poorly understood. I think a lot of the comments here suggesting that "the increasing effectiveness of placebo suggests that our culture is becoming more gullible/suggestible" are premature and show the bias of the people making those comments. Whether or not their conclusions are accurate, correlation does not equal causation and it could simply be that humans are developing more mirror neurons (or whatever else), giving us more--and not less--control over the power our minds have over our lives.
The parent poster was probably referring to prescription medications. Over the counter medications are usually allowed to be advertised on television in most countries. So for example, a medication you can buy over the counter will be allowed to be advertised but something that requires a doctors prescription cannot be advertised.
You should really check the links that you post more as all the youtube videos you linked to seem to be over the counter medications and not prescription medications.
Sounds like voodoo to me.
There are four kinds of people in this world: cretins, fools, morons, and lunatics - Umberto Eco
There's definitely something wrong causing people to have various pains and so on, but no one knows specifically what it is, so they called it fibromyalgia because that makes the person who named it, and people who use the phrase sound like they have a clue (just like SARS!) even when they don't.
The name SARS may be stupid but the syndrome is well defined and its cause understood.
Not any acute respiratory syndrome that mainfests itself suddenly is SARS but I think that is obvious.
should be "Not every acute respiratory syndrome that mainfests itself suddenly is SARS but I think that is obvious." of course; English is hard^^
Personally, I'm suffering because distant space aliens are taking experimental pills and transmitting their symptoms to me. I call it The Arecibo Effect.
Indeed. It can be refactored as follows:
Depression::Somatization.
Da Blog
If drugs have to be tested against placebos, because the placebo effect is strong enough to have a significant cure rate versus not giving a placebo; then why aren't we being given placebos for things we don't have drugs for?
Star Trek transporters are just 3d printers.
Oh, and as far as being tested for everything under the sun, sometimes tests return a false negative because most have at least a small instance if false positives/negatives. Sometimes labs mess up results. In other cases one antibody test may fail while a different test for the same condition using a different antibody works.
If you look around you can find instances of folks having 2 negative test for Lymes, then a positive on a 3rd, and after treatment for Lymes, the 'fibromyalgia' symptoms they had lessen. Never rule one thing out forever just because a single test was negative.
> In one remarkable case, a participant in an antidepressant drug trial was given placebo tablets — and then swallowed 26 of them in a suicide attempt.
This reminds me of the James Randi talk on homeopathy: Part of the theory of homeopathy is that the more dilute the solution is the stronger it is. Randi told the hypothetical story of someone who forgot to take his "medicine" thus causing an overdose and DIED.
Right, now, but when they named it SARS they weren't exactly clear that it was just one thing. That was kind of my point. Fibromyalgia might be one thing, it might be 3 or 4 different things that have all been wrongly lumped together.
I think today's parents/teachers/doctors have forgotten than when we (here defined as the "get off my lawn" generation) were kids, we were all positively *frenetic* compared to adults -- that's what *normal* kids are like. They aren't deskbound, chairbound, schedule-constrained robots.
~REZ~ #43301. Who'd fake being me anyway?
Fibromyalgia and RLS can both be secondary symptoms of borderline hypothyroidism. Occurs to me that arthritis, being essentially an autoimmune condition, could be related to Hashimoto's, ie. autoimmune thyroiditis. [I inherited low thyroid from one parent and some sort of mild autoimmune syndrome from the other, and the net result was Hashimoto's.] One of the problems here is that what's commonly called the normal range for TSH (thyroid stimulating hormone) probably is not truly normal, since many patients have symptoms until their T4 dosage is increased to the point that TSH is completely suppressed. [TSH levels have never been studied in *normal* people, only in thyroid patients following T4 replacement treatment, so the truth is, they don't really KNOW what's normal.]
Anyway, point is that a complete (not just TSH) thyroid workup is a good idea for these mystery patients, and even if the results are nominally normal, it may be worthwhile to try very low T4 doses and see if it helps.
~REZ~ #43301. Who'd fake being me anyway?
Some brain farts generated by your post:
Since fibromyalgia can be associated with undertreated or borderline hypothyroidism, my guess is that those cases are misfiring nerves due to some metabolic process that isn't running at full speed, whether due to low thyroid or some other issue.
Friend's wife had tired legs and numb hands, and been thought to have some problem in her lower back and wrists... turned out she had bone spurs in her neck and required surgery ASAP (otherwise the eventual prognosis was quadraplegia, if that's a word). Now much better.
Statins can cause a sort of drug-induced multiple sclerosis (the fatty "insulation" on the nerves being partly based on cholesterol ... you can see the problem).
A peculiarity I discovered upon moving to an area with a LOT of selenium in the ground water... I can no longer take vitamin supplements that contain selenium; if I do, I get gawdawful muscle pain in my back.
~REZ~ #43301. Who'd fake being me anyway?
... for at least one thing.
No less than a Cochrane meta-analysis has concluded acupuncture to be as effective as drugs for post operative nausea and vomiting.
http://www.ncbi.nlm.nih.gov/pubmed/19370583
Not six months later. And the original symptoms started before she got the really good drugs.
It doesn't hurt to be nice.
If we understood the nervous system better, I think we could find the cause of fibromyalgia. And I agree with you that we would likely find multiple, completely unrelated root causes.
It doesn't hurt to be nice.
Basically "banging on or chemically mistreating this nerve over here can cause that one over there to go 'huh?' or not work right". I don't think it requires more understanding so much as not microfocusing on Symptom A to the point of disconnecting it from Cause B... an increasing problem with the proliferation of specialists who can't see beyond their own hammer.
Aforementioned friend's wife had to hop up and down (well, by this point it was more like stagger about) and rudely demand an MRI (the problem was getting worse, no one seemed to have an answer) which made the cause clear... and made it obvious that focusing on wrists and legs was the wrong answer.
Myself, I had a wide array of what I now know are borderline-hypothyroid symptoms for *three decades*, yet could NOT convince anyone to run the most basic test since "you're not overweight, therefore it's not your thyroid". Well, when things got worse and they finally ran the test, and... I told you so!!
Does make me wonder how often this happens.
~REZ~ #43301. Who'd fake being me anyway?