Thank you for this. I don’t have any praise for chemo, it fucking sucks; that said, it does work. I look at the chemistry every two weeks, my tumour markers keep going down.
Cancer fucking sucks. Seriously. And it lurks in every cell. I can’t even express how much I loathe these carrion crows, these merchants of death, “oh hey, grape juice!” and six weeks later, the hopeful juice drinker is dead.
And for people who truly do not understand the complexity of cancer, or why it is so very difficult to treat, read The Emperor of All Maladies, by Siddhartha Mukherjee.
feministhomemakersays
Loved this post, PZ. I shared it on Facebook with my friends. I go tomorrow to get the results of my CT and MRI scans and the biopsy of the rectal tumor I found with self exam. I will learn what the chemo and radiation therapy will entail to shrink it and hopefully allow my surgeon to cut it out. This post treated me and my situation with honesty, respect, and made me feel supported. I got my Emma Gonzalez buzz on friday so my doc will see I am ready to face treatment and that I am strong. Her last experience was of me gratefully weeping and kissing of her hand for her kind, professional exam of my rectum, an exam my PCP stalled from doing and which I was cowed from asking for after she displayed extreme discomfort examining a small bump on my outside butt cheek! Dummy me! I should have fired her then. But I had a clean colonoscopy just shy of 3 years ago so I relied on that and did not press. Examine your rectum, everyone, and look for a hard mass. I finally found mine after having some weird symptoms all of a sudden. Rectal cancer can come up unexpectedly even after a clean colonoscopy. Older women fall through the cracks since we often no longer see gynecologists and we don’t have an annual prostate exam as men do. So demand a rectal exam each year and do it yourself in between, just to be careful. Thanks Caine for your input. It also made me feel encouraged my cancer will likewise respond to chemo. We will learn what stage tomorrow. And whether the origin is rectal gland or skin (melanoma?). I am very curious and that curiosity is very helpfully keeping me unexpectedly calm and envigored!
mksinghasays
I don’t like it when people who don’t understand cancer biology say “chemo kills” either, but not all alternative medicine is boasting a cure. Even the NIH addresses the role of palliative care. I doubt that cancer patients care if it sounds like quackery while fighting for their lives. There is enough scientific evidence to show the placebo effect reduces the sensation of pain. I say, do what you need to do to get through chemo/radiotherapy. I only hope we can develop better targeted cancer therapeutics in the future for some of the more difficult tumors.
CompulsoryAccount7746, Sky Captainsays
@Caine #3:
read The Emperor of All Maladies, by Siddhartha Mukherjee
Yes.
/ I’m glad you’re responding well to treatment – and in this era.
billyjoesays
Caine,
Sorry to hear about your cancer. Very few people with a cancer diagnosis are not at least partly persuaded by alternative medical practitioners and their advocates to try some alternative remedy (“what is the harm?” – there are lots, of course). I hope all goes well.
And for people who truly do not understand the complexity of cancer, or why it is so very difficult to treat, read The Emperor of All Maladies, by Siddhartha Mukherjee.
This is an excellent book for the educated, reasonably intelligent layperson, by an excellent writer with in-depth knowledge of his subject who writes in an appealing, easy-to-read, conversational style. He is an Indian-American and a practising oncologist so he has expertise in his subject. It is essentially a history of cancer treatment which shows clearly why cancers are so hard to treat (yes, it’s not one disease but thousands of diseases, as PZ says, and the characteristics of a single cancer in any one individual change progressively over time, and this is the major problem with treating it). Because they are also different, there will almost certainly never be a single cure for all cancers. There’s a lot of trial and error and, in many cases, they don’t know exactly why certain treatments work. There is also a personal dimension in the book because, like most people, his family has been affected by cancer.
(Siddhartha Mukherjee subsequently wrote a book on genetics: “The Gene: An Intimate History”. Unfortunately it was marred by his confusion regarding epigentics. He did seek out expertise on this section of his book but, unfortunately, sought out the wrong person. Which is a pity, because it could have been an excellent companion piece to his first book – because, as PZ says, cancers are all about gene mutations)
There is enough scientific evidence to show the placebo effect reduces the sensation of pain.
Fuck this noise with bells on, your flaming dipshit. Cancer pain is unfuckingbelievable, and this is coming from someone who lives with chronic pain every. single. day. When a daily dose of 90mgs of morphine barely keeps the pain in check, you have little tolerance for someone who chirps about fucking placebos.
I only hope we can develop better targeted cancer therapeutics in the future for some of the more difficult tumors.
Research is constant. I’m in clinical trial myself right now, which helps a hell of a lot more than your idiocy. All chemo is specifically targeted already. There’s no such thing as ‘universal’ chemo. Each cancer calls for specific cytotoxins.
I’m sorry to welcome you into the club. Yes, chemo will most likely be effective in your case, I certainly hope it will, and that you kick cancer’s ass. Get ready for a very long time of: Lab/Oncology/Infusion. My cancer is different from yours, I have a colorectal tumour, perched right above the first intestinal turn from the rectum.
If you’re interested, I have a series of Cancer Chronicles, they are all listed and linked on top of my sidebar at Affinity. And please, feel free to talk in any one of them, at any time. There’s also an open thread linked on the sidebar, if you need to talk. My email address is also linked, if you need to talk or scream, and prefer to do it privately.
Very few people with a cancer diagnosis are not at least partly persuaded by alternative medical practitioners and their advocates to try some alternative remedy (“what is the harm?” – there are lots, of course)
This gets discussed with terrifying normality among people in infusion, all the people dead from deciding on quackery. Almost everyone in infusion knows at least one person dead because quackery. Chemo truly does suck, and hard. It’s very easy to understand the allure of other treatments, even if they come with a certainty of death. Of course, people who rely on faith a great deal already are highly susceptible. Even those who aren’t can feel the pull, though. It’s what I wrote in one the chronicles – you’re staring at a person who is waiting for tacit permission to administer poison and subject you to radiation. Smart Monkey has one response: Run!
It’s difficult to resign yourself to such treatment, when every rational bit of you keeps screaming to run the fuck away from poison and radiation, because we all know that shit is bad. If you want to live, it’s what you must do, but no one ever said it was easy.
/ I’m glad you’re responding well to treatment – and in this era.
Thank you. And I’m beyond grateful it’s in this era too. Profoundly so.
billyjoesays
Mksingah,
I don’t like it when people who don’t understand cancer biology say “chemo kills” either, but not all alternative medicine is boasting a cure. Even the NIH addresses the role of palliative care. I doubt that cancer patients care if it sounds like quackery while fighting for their lives. There is enough scientific evidence to show the placebo effect reduces the sensation of pain. I say, do what you need to do to get through chemo/radiotherapy.
Please don’t fall for this nonsense.
Many experienced and wel-credentialed medical practitioners have spoken out on this subject. It is called “Quackademic Medicine”. You can find references on the “ScienceBasedMedicine” website:
Clinical trials have demonstrated that alternative medicine is as ineffective in palliation as it is in prevention and treatment. It is totally bogus. Of course, alternative practitioners often claim as their own treatments that are actually part of mainstream care. Don’t be fooled. That’s just the Trojan horse that gets their BS into academia. Unfortunately, many academic institutions pay lip service to alt-med and have the regrettably false attitude “what is the harm?”. As I said above, there are lots of harms.
Also don’t be fooled by the placebo effect. The very definition of the placebo effect tells you that it is not a justification for using it as a treatment. When researchers conduct clinical trials and they conclude that the treatment being investigated is no better than placebo, they mean “it does not work”. Remember that: if a treatment is said to work by the placebo effect, that means “it does not work”. Again, there are plenty of references at the above link.
This is an excellent book for the educated, reasonably intelligent layperson,
It’s a book for anyone and everyone. Do you even stop to think that your fucking snobbery could discourage someone from reading the book, and learning? Keep your snobbery elsewhere, and leave it out of Cancerland. That book has vital information for everyone who needs or wants an education about cancer, treatment, and the histories of both.
billyjoesays
Caine,
Yes, that seems to be the attraction of alt-med in cancer management. Science based medicine is slash, burn, and poison (surgery, radiotherapy, and chemotherapy) and there is this big conspiracy between the pharmaceutical companies and oncologists to hide the truth from you so that they can continue to earn big bucks; while all-med is gentle and kind and caring, holistic and patient centered. And uesless! There is also a lot of money in alt-med and you don’t have to worry about learning much or keeping up-to-date, because it’s all gut instinct and everyone pretends not to notice how the treatments are all contradictory and incompatible with each other.
billyjoesays
Caine,
Not sure what prompted your outburst.
There are lots of people for whom the book would not be suitable.
Nerd of Redhead, Dances OM Trollssays
Science based medicine is slash, burn, and poison (surgery, radiotherapy, and chemotherapy) and there is this big conspiracy between the pharmaceutical companies and oncologists to hide the truth from you so that they can continue to earn big bucks;
Either you believe that shit, or you are a presuppositional delusional fool. Let us know whether or not you are reality based. If not, your further talking on the subject will be ignored, as they should be.
What is your real, not just rhetorical, conclusion based on the evidence?
What a Maroon, living up to the 'nymsays
Jesus, Nerd, learn to read. Billyjoe isn’t making those claims; he’s characterizing the claims of people who drink the alt-med Koolaid.
Nerd of Redhead, Dances OM Trollssays
Billyjoe isn’t making those claims; he’s characterizing the claims of people who drink the alt-med Koolaid.
We already know what he said, as most of us having been paying attention for years. Why does BJ think we don’t know the facts. Why must he hear himself talk? I’m done for the day.
paxollsays
@Caine How about we keep the flaming dipshit talk to a minimum. Placebo is a such a significant part of symptom relief that all RCTs use placebo controls. You know what you call natural or alternative remedies that have undergone scientific research showing they work? Medicine. https://www.aafp.org/afp/2016/0901/p369.html
There is no way to avoid tolerance with opioid pain control, adjunctive pain control including mindfulness training is not only helpful but necessary for improving the quality of life of chronic pain sufferers https://link.springer.com/article/10.1007%2Fs11606-017-4116-9
What a Maroon, living up to the 'nymsays
Nerd, you quotemined billyjoe to make it sound like he was saying the opposite of what he was really saying. I don’t think you did so intentionally, but that’s what you did.
John Moralessays
paxoll @19:
Placebo is a such a significant part of symptom relief that all RCTs use placebo controls.
Um.
[Wikipedia] The terms “RCT” and randomized trial are sometimes used synonymously, but the methodologically sound practice is to reserve the “RCT” name only for trials that contain control groups, in which groups receiving the experimental treatment are compared with control groups receiving no treatment (a placebo-controlled study) or a previously tested treatment (a positive-control study).
It’s not there for symptom relief, it’s there to allow a control group; whatever the placebo effect of the placebo, both groups are subject to it.
You know what you call natural or alternative remedies that have undergone scientific research showing they work? Medicine.
Placebos, defininitionally, only work on the psychosomatic aspect of pain.
Now, if you want to call that medicine, fine — but then so is witch-doctoring.
There is no way to avoid tolerance with opioid pain control, adjunctive pain control including mindfulness training is not only helpful but necessary for improving the quality of life of chronic pain sufferers
Well, maybe some people can think their pain away and thus gain quality of life.
(Perhaps stoicism training is not only helpful but necessary for improving the quality of life of chronic pain sufferers, by extending your claim?)
paxollsays
@John, why are you repeating what I said and acting like you are contradicting me? I also linked a list of “alternative” medicine treatments that show effectiveness beyond the psychosomatic effects of placebo putting the “witch-doctoring” into the category of “medicine”.
John Moralessays
paxoll,
@John, why are you repeating what I said and acting like you are contradicting me?
I merely noted that placebo trials are there to provide a control group, not as therapy.
In fact, the placebos therein are as explicitly not-therapy as they can be.
For you to try to suggest that RTCs using placebos is an indication of their theurapeutic utility is not just wrong, but perverse.
I’m hardly contradicting you unless you intended to imply that the use of placebos in RTCs entailed that they are theurapeutic in themselves. You didn’t, did you?
I also linked a list of “alternative” medicine treatments that show effectiveness beyond the psychosomatic effects of placebo putting the “witch-doctoring” into the category of “medicine”.
Placebo is a such a significant part of symptom relief that all RCTs use placebo controls.
Think about it for a little while……”placebo controls”. Do you purposefully try and misunderstand here.
You know what you call natural or alternative remedies that have undergone scientific research showing they work? Medicine.
Why would I use the terms natural or alternative remedies if I was talking about placebos? If I wanted to give evidence for the therapeutic effects of placebos I would of linked this meta analysis. http://cochranelibrary-wiley.com/doi/10.1002/14651858.CD003974.pub3/full
Oh look, pain and nausea which are significant to the original cancer topic are things that show significant therapeutic effect.
John Moralessays
From your link:
Authors’ conclusions
We did not find that placebo interventions have important clinical effects in general.
Yeah, yeah. The perception that one is being treated by whatever method often helps a sufferer’s perception. The placebo effect.
Again: therapeutic treatment has no lesser placebo effect than non-therapeutic treatment – both are treatment.
Or: Your basic contention that placebo is in addition to (or an alternative!) to traditional treatment and thus a necessity is definitionally-flawed.
Again: placebo is non-theurapeutic treatment.
paxollsays
@John, dude your dishonest tactics here are quite disgusting, Nice quote mining, you forgot
However, in certain settings placebo interventions can influence patient-reported outcomes, especially pain and nausea
I’m tired of you purposefully misunderstanding and misrepresenting what I wrote. In the eloquent words of PZ
Oh, fuck off
billyjoesays
Paxoll.
I think you may be confused between what are called “the placebo effect” and “The Placebo Effect”.
In clinical trials “the placebo effect” is actually not a single effect but multiple effects. It includes effects such as “researcher degrees of freedom”, “reporting bias”, “regression to the mean”, “incomplete blinding”, “random allocation bias”, “unrecognised variables”, “recruitment bias”, and many other effects – including also “psychosomatic” effects.
[In other words, “the placebo effect” in clinical trials is basically anything that not caused directly by the treatment under investigation. So the TRUE effect (the effect of the treatment under investigation) is the OBSERVED effect (improvement in the treatment group minus the PLACEBO effect (improvement seen in the placebo group.]
On the other hand, “The Placebo Effect” refers to just the “psychosomatic” component of the “the placebo effect” seen in clinical trials. If you conflate the two, you will get the impression that “The Placebo Effect” is quite powerful. In fact, it has been shown to be very weak, unreliable, and transient, and really only seen in clinical trials that involve subjective end-points such as pain, nausea, and depression. For this reason, it is important to try to include objective end points as far as possible.
billyjoesays
Sorry, I forgot to close two brackets in the third paragraph.
It should read:
In other words, “the placebo effect” in clinical trials is basically anything that not caused directly by the treatment under investigation. So the TRUE effect (the effect of the treatment under investigation) is the OBSERVED effect (improvement in the treatment group) minus the PLACEBO effect (improvement seen in the placebo group).
paxollsays
@Billyjoe, I’m not mixing the two, I’ve never heard anyone use “the placebo effect” in the way you describe. In science, bias and uncontrolled variables, are called bias and uncontrolled variables. The placebo effect and nocebo effects are specifically the psychosomatic effects that are controlled for in the trial by application of a “Placebo”. No idea where you got this bizarre definition from.
billyjoesays
Paxoll,
However, in certain settings placebo interventions can influence patient-reported outcomes, especially pain and nausea
Crip Dyke, Right Reverend Feminist FuckToy of Death & Her Handmaidensays
@paxoll:
I’m with you, paxoll. I don’t do medical research, so I could easily be wrong, but while regression to the mean is certainly a confound, I haven’t heard of it being discussed as a placebo effect. Now, it’s true that you subtract the observed effect in the control group*2 from the observed effect in the treatment group in order to get a better estimate of treatment effect size. One does that without bothering to determine exactly how much of the effect seen in the control group is a placebo effect, since the confounds are estimated to be the same for both the control group and for the treatment group. But that doesn’t imply that those other confounds are part of “the placebo effect”.
Maybe some folks do use it that way, but it’s not how I’ve heard it used.
*1: that can, for instance, appear to show a pain reliever is effective simply because by the time the pain becomes serious enough to take a pill, it might very well be at or near its peak. The person would then not feel their pain noticeably worsen, and perhaps even notice a timely reduction in pain. This cap and/or reduction wouldn’t be psychosomatic. It would be regression to the mean. But it would also not be the placebo effect.
*2: They’re called the control group for a reason. Again, I don’t do medical research, but my experience is that the language is “treatment group” and “control group”. Not “treatment group” and “placebo group”.
Crip Dyke, Right Reverend Feminist FuckToy of Death & Her Handmaidensays
@billyjoe, #30:
Yeah, those links don’t support you at all. The article on response bias does not mention the placebo effect at all. The only use of the word placebo is in describing (without using the term) “double blind studies” in saying that expectancy effects can be controlled for in the data through the use of a placebo or control group paired with a treatment or experimental intervention group without alerting the researcher as to which subjects are in which group.
On the Hawthorne Effect page, it mentions the placebo effect by name, but only as a link under “see also”. The word placebo is used one other time, also in the title of a link, without being paired with the word “effect”. That’s it. Nothing in either article describes the Hawthorne effect specifically or response bias generally as a “placebo effect”.
Further, if you actually click the link under “see also” in your Hawthorne Effect article, you get this description on the page that actually directly addresses the placebo effect:
In drug testing and medical research, a placebo can be made to resemble an active medication or therapy so that it functions as a control; this is to prevent the recipient(s) and/or others from knowing (with their consent) whether a treatment is active or inactive, as expectations about efficacy can influence results.[7][8] This psychological phenomenon, in which the recipient perceives an improvement in condition due to personal expectations, rather than the treatment itself, is known as the placebo effect or placebo response.
So they are saying what I’m saying: the Placebo Effect or the placebo effect – either way – is a specific form of expectancy effect. That doesn’t make all confounds (such as regression to the mean) or even all expectancy effects into placebo effects.
For the final time, medical research isn’t my field, but it overlaps in terminology with psychological research which overlapped with my ethics research, so I was familiar enough with the term in literature that I didn’t think anyone seriously used “placebo effect” to include all the things you’re describing. Nor do I think that they’re called placebo groups nearly as often as they are simply referred to as control groups.
I could be wrong, of course, but what I do know, and what your own links show, dovetails exactly: regression to the mean is not an expectancy effect, and even some expectancy effects are not placebo effects.
I must ask: did you actually read the information at your own links? They seem to contradict you quite thoroughly.
paxollsays
@Billyjoe Sorry but those are not part of the placebo effect, in fact the linked meta-analysis specifically mentions teasing out those differences
it is difficult to distinguish patient-reported effects of placebo from biased reporting. The effect on pain varied, even among trials with low risk of bias, from negligible to clinically important. Variations in the effect of placebo were partly explained by variations in how trials were conducted and how patients were informed.
more specifically
and whether patients were informed that the trial involved placebo.
Forewarned is forearmed and while I don’t have access to the full article to apply my opinion on their opinion of “low risk bias” I think the likely error is toward no significant difference because the research they were testing was not specifically on the placebo effect, but
We included randomised placebo trials with a no-treatment control group
This means they were testing something completely different but included a no-treatment control group to help control the placebo effect, this is significantly inferior to a study designed to specifically measure the placebo effect. Regardless this is the gold standard of scientific certainty and they are showing a significant effect of “Placebo” on pain and nausea.
billyjoesays
Crip,
I was talking the placebo effect in relation to clinical trials. The placebo effect seen in clinical trials includes ALL the effects seen in the placebo group. If you think about that for a moment, it is obvious that this would have to include “regression to the mean” and ALL the other effects I mentioned and more. In other words, ALL the effects that are NOT due to the treatment.
This is different from when psychologists discus the placebo effect. They are only interested in the placebo effect from a psychological or neurobiological point of view. No problem (except for the confusion created!)
In other words, there are two different ways of talking about the placebo effect, and you need to be careful not to confuse the two. Specifically, when you want to talk about how powerful the placebo effect is, you will need to reference the outcome of clinical trials, in which case, you will need to recognise that the placebo effect includes “regression to the mean” and ALL those other factors.
As to your second comment.
There is a “treatment group” and a “control group”. The “control group” can be either a “placebo group” or a “no treatment group”. Sometimes both control groups are used.
nomdeplumesays
Well said PZ. I have been through three courses of chemo over a 7 year period. It is horrible, it knocks your body around during the treatment, and leaves you with side-effects afterwards. But it does keep you alive. And it is, as a result of extensive research, improving all the time, heading, ultimately towards treatments which can be aimed specifically at an individual, using immune systems and genetic targeting. I understand the fear of chemo, felt it myself in my first course, and I understand the desire to be told there is an easy way to do it, by eating purple fruit or some such nonsense. But I echo PZ’s plea – if you, or someone you love, has cancer, get them into treatment as soon as you can.
billyjoesays
Paxoll,
I can’t be any clearer that I have.
Ask any clinical researcher and they will tell you their measurement of the placebo effect in their clinical trials includes ALL those effects.
Also see my response to Crip
“a sovereign citizen, a creationist, an anti-vaxxer, and a conspiracy theorist walk into a bar. he orders a drink.”
feministhomemakersays
Thank you Caine! Will keep you in mind and send you best wishes as well.
diannesays
Randomized controlled clinical trials can and often do have an active comparator arm rather than a placebo arm. It’s not ethical to give one group of patients placebo only when they have a condition that can be at least partly treated with an approved drug. If that helps any in this argument.
diannesays
Note that the latest thing in cancer therapy is drugs that actually do what the “natural treatment” folks have been claiming their products do for years: strengthen the immune system. As might be predicted, strengthening the immune system is by no means a wholly positive thing: patients taking these drugs may have a good tumor response but they also may get some hella nasty autoimmune conditions. Immune balance is a thing for a reason.
Crip Dyke, Right Reverend Feminist FuckToy of Death & Her Handmaidensays
Thanks, dianne.
I don’t ever hear anyone use “placebo effect” synonymously with “the effect size in the placebo group”. Partly this is because what you said is true: many control groups aren’t placebo groups (or aren’t placebo only). But it may also be that outside of the literature I read, either in literature in medical journals or maybe just in informal conversations between researchers, some people do use “placebo effect” as shorthand for “the effect size in the placebo group”. billyjoe, IIUC, is merely asserting that despite the existence of a well-established effect with the specific name “placebo effect” some people will use “placebo effect” in this short hand way, despite the inconsistency with the specifically named and studied effect.
I think this is a relatively non-controversial claim. If someone wanted to use placebo effect that way in a class I was teaching (should I take up teaching again), I’d probably dock them points. But if researchers find it a convenient shorthand somewhere, they probably will use it. With 7 billion people and easily over a million medical researchers in the world, the odds that some do that would be easy to estimate at 100% even without billyjoe’s personal testimony to the fact. Now that I understand (I think) what billyjoe was saying, I’ve got no problem with the assertion.
Crip Dyke, Right Reverend Feminist FuckToy of Death & Her Handmaidensays
Of course, I should also make it clear that both billyjoe and those researchers are very, very wrong. They are as wrong and evil as people who think cats are better than dogs, eaters of cooked Brussels sprouts, and those who omit the Oxford comma.
diannesays
@Cripdyke 42: I’m with you on all of the above. What sort of a monster would omit the Oxford comma?
billyjoesays
Crip,
Thanks for your follow-up. Except that I never said that I agreed with those researchers who call “the effect size in the placebo group” the “placebo effect”. But, yeah, people use shorthand all the time for frequently used phrases in their line of work. On the other hand, it does make some sense: they are using an actual placebo in that placebo group and therefore, what they are they measuring is the effect of that placebo.
Yeah, and, all things considered, I’m all for the Oxford comma.
billyjoesays
Remember, too, that my purpose in raising this was that a commenter was of the opinion that the placebo effect was significant. My point was that it may seem so if you are using the “placebo effect” or, as you say, “the effect size in the placebo group” in clinical trials. Because that gives you a pretty inflated idea about how pretty ineffective it actually is.
CompulsoryAccount7746, Sky Captainsays
Crip Dyke #41:
I’d probably dock them points. But if researchers find it a convenient shorthand somewhere, they probably will use it.
billyjoe #45:
My point was that it may seem so if you are using the “placebo effect” or, as you say, “the effect size in the placebo group” in clinical trials. Because that gives you a pretty inflated idea about how pretty ineffective it actually is.
The only proper reference of “the placebo response” is the outcome measured in the placebo arm of a clinical trial, where use of the singular is proper because the study is measuring a net combined placebo effect. When we start talking about the placebo phenomenon, however, we have to start talking about placebo effects in the plural.
[…]
popular writers like Begley talk about physiological mechanisms like endorphins and dopamine without mentioning all the other effects that are being measured in those clinical trials they are citing as evidence for how powerful those mechanisms are.
The first and overriding myth about placebos is that there is one placebo effect (singular). This confusion is understandable, because scientists often refer to “the” placebo effect. However, they are referring to what is measured in the placebo arm of a clinical trial – that net effect (the difference between baseline or no treatment at all and a placebo treatment) is the placebo effect for that study.
There are multiple placebo effects contributing to that difference, however. Anything that might give the appearance of an improvement will contribute to the measured placebo effect.
[…]
Placebo effects break down into several categories. One category is illusory – the misperception of improvement through regression to the mean or biased reporting. The second category is non-specific effects, such as emotional comfort from a practitioner, relaxation, or improved self-care or compliance. This third category is comprised of effects which can plausibly result from psychological interventions only. These relate mainly to stress, depression, anxiety, and the perception of pain and similar subjective symptoms. There is a mind-body connection – it’s called the brain.
Crip Dyke, Right Reverend Feminist FuckToy of Death & Her Handmaidensays
Remember, too, that my purpose in raising this was that a commenter was of the opinion that the placebo effect was significant. My point was that it may seem so if you are using the “placebo effect” or, as you say, “the effect size in the placebo group” in clinical trials. Because that gives you a pretty inflated idea about how [effective] it actually is.*1
Then you were making a good point. That conversation started long enough ago that I’d forgotten why you brought it up originally. As I’d mentioned, I’m not a psychologist, but my work in ethics (and my degree path) required a lot of psychology, so I am much more familiar with the papers and conversations of psychologists than of medical doctors, biochemists and the like.
*1: Hope my edit doesn’t misrepresent you. It seemed to me to be more clear this way, and that it was likely still what you were trying to express, though if I’ve got it wrong, you’re welcome to tell me.
Crip Dyke, Right Reverend Feminist FuckToy of Death & Her Handmaiden says
But, but, PZ: isn’t the reason Lance Armstrong got cancer because he never exercised?
Caine says
Thank you for this. I don’t have any praise for chemo, it fucking sucks; that said, it does work. I look at the chemistry every two weeks, my tumour markers keep going down.
Cancer fucking sucks. Seriously. And it lurks in every cell. I can’t even express how much I loathe these carrion crows, these merchants of death, “oh hey, grape juice!” and six weeks later, the hopeful juice drinker is dead.
Caine says
And for people who truly do not understand the complexity of cancer, or why it is so very difficult to treat, read The Emperor of All Maladies, by Siddhartha Mukherjee.
feministhomemaker says
Loved this post, PZ. I shared it on Facebook with my friends. I go tomorrow to get the results of my CT and MRI scans and the biopsy of the rectal tumor I found with self exam. I will learn what the chemo and radiation therapy will entail to shrink it and hopefully allow my surgeon to cut it out. This post treated me and my situation with honesty, respect, and made me feel supported. I got my Emma Gonzalez buzz on friday so my doc will see I am ready to face treatment and that I am strong. Her last experience was of me gratefully weeping and kissing of her hand for her kind, professional exam of my rectum, an exam my PCP stalled from doing and which I was cowed from asking for after she displayed extreme discomfort examining a small bump on my outside butt cheek! Dummy me! I should have fired her then. But I had a clean colonoscopy just shy of 3 years ago so I relied on that and did not press. Examine your rectum, everyone, and look for a hard mass. I finally found mine after having some weird symptoms all of a sudden. Rectal cancer can come up unexpectedly even after a clean colonoscopy. Older women fall through the cracks since we often no longer see gynecologists and we don’t have an annual prostate exam as men do. So demand a rectal exam each year and do it yourself in between, just to be careful. Thanks Caine for your input. It also made me feel encouraged my cancer will likewise respond to chemo. We will learn what stage tomorrow. And whether the origin is rectal gland or skin (melanoma?). I am very curious and that curiosity is very helpfully keeping me unexpectedly calm and envigored!
mksingha says
I don’t like it when people who don’t understand cancer biology say “chemo kills” either, but not all alternative medicine is boasting a cure. Even the NIH addresses the role of palliative care. I doubt that cancer patients care if it sounds like quackery while fighting for their lives. There is enough scientific evidence to show the placebo effect reduces the sensation of pain. I say, do what you need to do to get through chemo/radiotherapy. I only hope we can develop better targeted cancer therapeutics in the future for some of the more difficult tumors.
CompulsoryAccount7746, Sky Captain says
@Caine #3:
Yes.
/ I’m glad you’re responding well to treatment – and in this era.
billyjoe says
Caine,
Sorry to hear about your cancer. Very few people with a cancer diagnosis are not at least partly persuaded by alternative medical practitioners and their advocates to try some alternative remedy (“what is the harm?” – there are lots, of course). I hope all goes well.
This is an excellent book for the educated, reasonably intelligent layperson, by an excellent writer with in-depth knowledge of his subject who writes in an appealing, easy-to-read, conversational style. He is an Indian-American and a practising oncologist so he has expertise in his subject. It is essentially a history of cancer treatment which shows clearly why cancers are so hard to treat (yes, it’s not one disease but thousands of diseases, as PZ says, and the characteristics of a single cancer in any one individual change progressively over time, and this is the major problem with treating it). Because they are also different, there will almost certainly never be a single cure for all cancers. There’s a lot of trial and error and, in many cases, they don’t know exactly why certain treatments work. There is also a personal dimension in the book because, like most people, his family has been affected by cancer.
(Siddhartha Mukherjee subsequently wrote a book on genetics: “The Gene: An Intimate History”. Unfortunately it was marred by his confusion regarding epigentics. He did seek out expertise on this section of his book but, unfortunately, sought out the wrong person. Which is a pity, because it could have been an excellent companion piece to his first book – because, as PZ says, cancers are all about gene mutations)
Caine says
@ 5:
Fuck this noise with bells on, your flaming dipshit. Cancer pain is unfuckingbelievable, and this is coming from someone who lives with chronic pain every. single. day. When a daily dose of 90mgs of morphine barely keeps the pain in check, you have little tolerance for someone who chirps about fucking placebos.
Research is constant. I’m in clinical trial myself right now, which helps a hell of a lot more than your idiocy. All chemo is specifically targeted already. There’s no such thing as ‘universal’ chemo. Each cancer calls for specific cytotoxins.
Caine says
Feministhomemaker @ 4:
I’m sorry to welcome you into the club. Yes, chemo will most likely be effective in your case, I certainly hope it will, and that you kick cancer’s ass. Get ready for a very long time of: Lab/Oncology/Infusion. My cancer is different from yours, I have a colorectal tumour, perched right above the first intestinal turn from the rectum.
If you’re interested, I have a series of Cancer Chronicles, they are all listed and linked on top of my sidebar at Affinity. And please, feel free to talk in any one of them, at any time. There’s also an open thread linked on the sidebar, if you need to talk. My email address is also linked, if you need to talk or scream, and prefer to do it privately.
Caine says
billyjoe:
This gets discussed with terrifying normality among people in infusion, all the people dead from deciding on quackery. Almost everyone in infusion knows at least one person dead because quackery. Chemo truly does suck, and hard. It’s very easy to understand the allure of other treatments, even if they come with a certainty of death. Of course, people who rely on faith a great deal already are highly susceptible. Even those who aren’t can feel the pull, though. It’s what I wrote in one the chronicles – you’re staring at a person who is waiting for tacit permission to administer poison and subject you to radiation. Smart Monkey has one response: Run!
It’s difficult to resign yourself to such treatment, when every rational bit of you keeps screaming to run the fuck away from poison and radiation, because we all know that shit is bad. If you want to live, it’s what you must do, but no one ever said it was easy.
Caine says
CompulsoryAccount7746, Sky Captain:
Thank you. And I’m beyond grateful it’s in this era too. Profoundly so.
billyjoe says
Mksingah,
Please don’t fall for this nonsense.
Many experienced and wel-credentialed medical practitioners have spoken out on this subject. It is called “Quackademic Medicine”. You can find references on the “ScienceBasedMedicine” website:
https://sciencebasedmedicine.org
Clinical trials have demonstrated that alternative medicine is as ineffective in palliation as it is in prevention and treatment. It is totally bogus. Of course, alternative practitioners often claim as their own treatments that are actually part of mainstream care. Don’t be fooled. That’s just the Trojan horse that gets their BS into academia. Unfortunately, many academic institutions pay lip service to alt-med and have the regrettably false attitude “what is the harm?”. As I said above, there are lots of harms.
Also don’t be fooled by the placebo effect. The very definition of the placebo effect tells you that it is not a justification for using it as a treatment. When researchers conduct clinical trials and they conclude that the treatment being investigated is no better than placebo, they mean “it does not work”. Remember that: if a treatment is said to work by the placebo effect, that means “it does not work”. Again, there are plenty of references at the above link.
Caine says
billyjoe:
It’s a book for anyone and everyone. Do you even stop to think that your fucking snobbery could discourage someone from reading the book, and learning? Keep your snobbery elsewhere, and leave it out of Cancerland. That book has vital information for everyone who needs or wants an education about cancer, treatment, and the histories of both.
billyjoe says
Caine,
Yes, that seems to be the attraction of alt-med in cancer management. Science based medicine is slash, burn, and poison (surgery, radiotherapy, and chemotherapy) and there is this big conspiracy between the pharmaceutical companies and oncologists to hide the truth from you so that they can continue to earn big bucks; while all-med is gentle and kind and caring, holistic and patient centered. And uesless! There is also a lot of money in alt-med and you don’t have to worry about learning much or keeping up-to-date, because it’s all gut instinct and everyone pretends not to notice how the treatments are all contradictory and incompatible with each other.
billyjoe says
Caine,
Not sure what prompted your outburst.
There are lots of people for whom the book would not be suitable.
Nerd of Redhead, Dances OM Trolls says
Either you believe that shit, or you are a presuppositional delusional fool. Let us know whether or not you are reality based. If not, your further talking on the subject will be ignored, as they should be.
What is your real, not just rhetorical, conclusion based on the evidence?
What a Maroon, living up to the 'nym says
Jesus, Nerd, learn to read. Billyjoe isn’t making those claims; he’s characterizing the claims of people who drink the alt-med Koolaid.
Nerd of Redhead, Dances OM Trolls says
We already know what he said, as most of us having been paying attention for years. Why does BJ think we don’t know the facts. Why must he hear himself talk? I’m done for the day.
paxoll says
@Caine How about we keep the flaming dipshit talk to a minimum. Placebo is a such a significant part of symptom relief that all RCTs use placebo controls. You know what you call natural or alternative remedies that have undergone scientific research showing they work? Medicine. https://www.aafp.org/afp/2016/0901/p369.html
There is no way to avoid tolerance with opioid pain control, adjunctive pain control including mindfulness training is not only helpful but necessary for improving the quality of life of chronic pain sufferers
https://link.springer.com/article/10.1007%2Fs11606-017-4116-9
What a Maroon, living up to the 'nym says
Nerd, you quotemined billyjoe to make it sound like he was saying the opposite of what he was really saying. I don’t think you did so intentionally, but that’s what you did.
John Morales says
paxoll @19:
Um.
It’s not there for symptom relief, it’s there to allow a control group; whatever the placebo effect of the placebo, both groups are subject to it.
Placebos, defininitionally, only work on the psychosomatic aspect of pain.
Now, if you want to call that medicine, fine — but then so is witch-doctoring.
Well, maybe some people can think their pain away and thus gain quality of life.
(Perhaps stoicism training is not only helpful but necessary for improving the quality of life of chronic pain sufferers, by extending your claim?)
paxoll says
@John, why are you repeating what I said and acting like you are contradicting me? I also linked a list of “alternative” medicine treatments that show effectiveness beyond the psychosomatic effects of placebo putting the “witch-doctoring” into the category of “medicine”.
John Morales says
paxoll,
I merely noted that placebo trials are there to provide a control group, not as therapy.
In fact, the placebos therein are as explicitly not-therapy as they can be.
For you to try to suggest that RTCs using placebos is an indication of their theurapeutic utility is not just wrong, but perverse.
I’m hardly contradicting you unless you intended to imply that the use of placebos in RTCs entailed that they are theurapeutic in themselves. You didn’t, did you?
Then they’re not placebo, are they?
paxoll says
@John read what I wrote
Think about it for a little while……”placebo controls”. Do you purposefully try and misunderstand here.
Why would I use the terms natural or alternative remedies if I was talking about placebos? If I wanted to give evidence for the therapeutic effects of placebos I would of linked this meta analysis.
http://cochranelibrary-wiley.com/doi/10.1002/14651858.CD003974.pub3/full
Oh look, pain and nausea which are significant to the original cancer topic are things that show significant therapeutic effect.
John Morales says
From your link:
Yeah, yeah. The perception that one is being treated by whatever method often helps a sufferer’s perception. The placebo effect.
Again: therapeutic treatment has no lesser placebo effect than non-therapeutic treatment – both are treatment.
Or: Your basic contention that placebo is in addition to (or an alternative!) to traditional treatment and thus a necessity is definitionally-flawed.
Again: placebo is non-theurapeutic treatment.
paxoll says
@John, dude your dishonest tactics here are quite disgusting, Nice quote mining, you forgot
I’m tired of you purposefully misunderstanding and misrepresenting what I wrote. In the eloquent words of PZ
billyjoe says
Paxoll.
I think you may be confused between what are called “the placebo effect” and “The Placebo Effect”.
In clinical trials “the placebo effect” is actually not a single effect but multiple effects. It includes effects such as “researcher degrees of freedom”, “reporting bias”, “regression to the mean”, “incomplete blinding”, “random allocation bias”, “unrecognised variables”, “recruitment bias”, and many other effects – including also “psychosomatic” effects.
[In other words, “the placebo effect” in clinical trials is basically anything that not caused directly by the treatment under investigation. So the TRUE effect (the effect of the treatment under investigation) is the OBSERVED effect (improvement in the treatment group minus the PLACEBO effect (improvement seen in the placebo group.]
On the other hand, “The Placebo Effect” refers to just the “psychosomatic” component of the “the placebo effect” seen in clinical trials. If you conflate the two, you will get the impression that “The Placebo Effect” is quite powerful. In fact, it has been shown to be very weak, unreliable, and transient, and really only seen in clinical trials that involve subjective end-points such as pain, nausea, and depression. For this reason, it is important to try to include objective end points as far as possible.
billyjoe says
Sorry, I forgot to close two brackets in the third paragraph.
It should read:
In other words, “the placebo effect” in clinical trials is basically anything that not caused directly by the treatment under investigation. So the TRUE effect (the effect of the treatment under investigation) is the OBSERVED effect (improvement in the treatment group) minus the PLACEBO effect (improvement seen in the placebo group).
paxoll says
@Billyjoe, I’m not mixing the two, I’ve never heard anyone use “the placebo effect” in the way you describe. In science, bias and uncontrolled variables, are called bias and uncontrolled variables. The placebo effect and nocebo effects are specifically the psychosomatic effects that are controlled for in the trial by application of a “Placebo”. No idea where you got this bizarre definition from.
billyjoe says
Paxoll,
This is part of “the placebo effect” seen in clinical trials called “response bias”.
https://en.m.wikipedia.org/wiki/Response_bias
A similar effect is “the observer effect”, also called “the Hawthorn effect”
https://en.m.wikipedia.org/wiki/Hawthorne_effect
Crip Dyke, Right Reverend Feminist FuckToy of Death & Her Handmaiden says
@paxoll:
I’m with you, paxoll. I don’t do medical research, so I could easily be wrong, but while regression to the mean is certainly a confound, I haven’t heard of it being discussed as a placebo effect. Now, it’s true that you subtract the observed effect in the control group*2 from the observed effect in the treatment group in order to get a better estimate of treatment effect size. One does that without bothering to determine exactly how much of the effect seen in the control group is a placebo effect, since the confounds are estimated to be the same for both the control group and for the treatment group. But that doesn’t imply that those other confounds are part of “the placebo effect”.
Maybe some folks do use it that way, but it’s not how I’ve heard it used.
*1: that can, for instance, appear to show a pain reliever is effective simply because by the time the pain becomes serious enough to take a pill, it might very well be at or near its peak. The person would then not feel their pain noticeably worsen, and perhaps even notice a timely reduction in pain. This cap and/or reduction wouldn’t be psychosomatic. It would be regression to the mean. But it would also not be the placebo effect.
*2: They’re called the control group for a reason. Again, I don’t do medical research, but my experience is that the language is “treatment group” and “control group”. Not “treatment group” and “placebo group”.
Crip Dyke, Right Reverend Feminist FuckToy of Death & Her Handmaiden says
@billyjoe, #30:
Yeah, those links don’t support you at all. The article on response bias does not mention the placebo effect at all. The only use of the word placebo is in describing (without using the term) “double blind studies” in saying that expectancy effects can be controlled for in the data through the use of a placebo or control group paired with a treatment or experimental intervention group without alerting the researcher as to which subjects are in which group.
On the Hawthorne Effect page, it mentions the placebo effect by name, but only as a link under “see also”. The word placebo is used one other time, also in the title of a link, without being paired with the word “effect”. That’s it. Nothing in either article describes the Hawthorne effect specifically or response bias generally as a “placebo effect”.
Further, if you actually click the link under “see also” in your Hawthorne Effect article, you get this description on the page that actually directly addresses the placebo effect:
So they are saying what I’m saying: the Placebo Effect or the placebo effect – either way – is a specific form of expectancy effect. That doesn’t make all confounds (such as regression to the mean) or even all expectancy effects into placebo effects.
For the final time, medical research isn’t my field, but it overlaps in terminology with psychological research which overlapped with my ethics research, so I was familiar enough with the term in literature that I didn’t think anyone seriously used “placebo effect” to include all the things you’re describing. Nor do I think that they’re called placebo groups nearly as often as they are simply referred to as control groups.
I could be wrong, of course, but what I do know, and what your own links show, dovetails exactly: regression to the mean is not an expectancy effect, and even some expectancy effects are not placebo effects.
I must ask: did you actually read the information at your own links? They seem to contradict you quite thoroughly.
paxoll says
@Billyjoe Sorry but those are not part of the placebo effect, in fact the linked meta-analysis specifically mentions teasing out those differences
more specifically
Forewarned is forearmed and while I don’t have access to the full article to apply my opinion on their opinion of “low risk bias” I think the likely error is toward no significant difference because the research they were testing was not specifically on the placebo effect, but
This means they were testing something completely different but included a no-treatment control group to help control the placebo effect, this is significantly inferior to a study designed to specifically measure the placebo effect. Regardless this is the gold standard of scientific certainty and they are showing a significant effect of “Placebo” on pain and nausea.
billyjoe says
Crip,
I was talking the placebo effect in relation to clinical trials. The placebo effect seen in clinical trials includes ALL the effects seen in the placebo group. If you think about that for a moment, it is obvious that this would have to include “regression to the mean” and ALL the other effects I mentioned and more. In other words, ALL the effects that are NOT due to the treatment.
This is different from when psychologists discus the placebo effect. They are only interested in the placebo effect from a psychological or neurobiological point of view. No problem (except for the confusion created!)
In other words, there are two different ways of talking about the placebo effect, and you need to be careful not to confuse the two. Specifically, when you want to talk about how powerful the placebo effect is, you will need to reference the outcome of clinical trials, in which case, you will need to recognise that the placebo effect includes “regression to the mean” and ALL those other factors.
As to your second comment.
There is a “treatment group” and a “control group”. The “control group” can be either a “placebo group” or a “no treatment group”. Sometimes both control groups are used.
nomdeplume says
Well said PZ. I have been through three courses of chemo over a 7 year period. It is horrible, it knocks your body around during the treatment, and leaves you with side-effects afterwards. But it does keep you alive. And it is, as a result of extensive research, improving all the time, heading, ultimately towards treatments which can be aimed specifically at an individual, using immune systems and genetic targeting. I understand the fear of chemo, felt it myself in my first course, and I understand the desire to be told there is an easy way to do it, by eating purple fruit or some such nonsense. But I echo PZ’s plea – if you, or someone you love, has cancer, get them into treatment as soon as you can.
billyjoe says
Paxoll,
I can’t be any clearer that I have.
Ask any clinical researcher and they will tell you their measurement of the placebo effect in their clinical trials includes ALL those effects.
Also see my response to Crip
aarrgghh says
pz sez:
see: crank magnetism
feministhomemaker says
Thank you Caine! Will keep you in mind and send you best wishes as well.
dianne says
Randomized controlled clinical trials can and often do have an active comparator arm rather than a placebo arm. It’s not ethical to give one group of patients placebo only when they have a condition that can be at least partly treated with an approved drug. If that helps any in this argument.
dianne says
Note that the latest thing in cancer therapy is drugs that actually do what the “natural treatment” folks have been claiming their products do for years: strengthen the immune system. As might be predicted, strengthening the immune system is by no means a wholly positive thing: patients taking these drugs may have a good tumor response but they also may get some hella nasty autoimmune conditions. Immune balance is a thing for a reason.
Crip Dyke, Right Reverend Feminist FuckToy of Death & Her Handmaiden says
Thanks, dianne.
I don’t ever hear anyone use “placebo effect” synonymously with “the effect size in the placebo group”. Partly this is because what you said is true: many control groups aren’t placebo groups (or aren’t placebo only). But it may also be that outside of the literature I read, either in literature in medical journals or maybe just in informal conversations between researchers, some people do use “placebo effect” as shorthand for “the effect size in the placebo group”. billyjoe, IIUC, is merely asserting that despite the existence of a well-established effect with the specific name “placebo effect” some people will use “placebo effect” in this short hand way, despite the inconsistency with the specifically named and studied effect.
I think this is a relatively non-controversial claim. If someone wanted to use placebo effect that way in a class I was teaching (should I take up teaching again), I’d probably dock them points. But if researchers find it a convenient shorthand somewhere, they probably will use it. With 7 billion people and easily over a million medical researchers in the world, the odds that some do that would be easy to estimate at 100% even without billyjoe’s personal testimony to the fact. Now that I understand (I think) what billyjoe was saying, I’ve got no problem with the assertion.
Crip Dyke, Right Reverend Feminist FuckToy of Death & Her Handmaiden says
Of course, I should also make it clear that both billyjoe and those researchers are very, very wrong. They are as wrong and evil as people who think cats are better than dogs, eaters of cooked Brussels sprouts, and those who omit the Oxford comma.
dianne says
@Cripdyke 42: I’m with you on all of the above. What sort of a monster would omit the Oxford comma?
billyjoe says
Crip,
Thanks for your follow-up. Except that I never said that I agreed with those researchers who call “the effect size in the placebo group” the “placebo effect”. But, yeah, people use shorthand all the time for frequently used phrases in their line of work. On the other hand, it does make some sense: they are using an actual placebo in that placebo group and therefore, what they are they measuring is the effect of that placebo.
Yeah, and, all things considered, I’m all for the Oxford comma.
billyjoe says
Remember, too, that my purpose in raising this was that a commenter was of the opinion that the placebo effect was significant. My point was that it may seem so if you are using the “placebo effect” or, as you say, “the effect size in the placebo group” in clinical trials. Because that gives you a pretty inflated idea about how pretty ineffective it actually is.
CompulsoryAccount7746, Sky Captain says
Crip Dyke #41:
billyjoe #45:
Article: Steven Novella – The Placebo Narrative
Article: Steven Novella – Placebo Myths Debunked
Crip Dyke, Right Reverend Feminist FuckToy of Death & Her Handmaiden says
Then you were making a good point. That conversation started long enough ago that I’d forgotten why you brought it up originally. As I’d mentioned, I’m not a psychologist, but my work in ethics (and my degree path) required a lot of psychology, so I am much more familiar with the papers and conversations of psychologists than of medical doctors, biochemists and the like.
*1: Hope my edit doesn’t misrepresent you. It seemed to me to be more clear this way, and that it was likely still what you were trying to express, though if I’ve got it wrong, you’re welcome to tell me.