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A short explanation of doctor behavior for buddies


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To those who are confused by the denials and strange behavior they have experienced from doctors while they are tapering or experiencing a post-withdrawal syndrome, this may help you make sense of things:

 

 

It is a short Ted Talk on medical errors and the medical culture surrounding them, which is extremely fu*ked up. Essentially, there is a culture of complete denial of errors, to both doctors and patients. Doctors are not supposed to make mistakes, and so they pretend they don't, but obviously every doctor will make one on occasion. So if you feel your doctors have been unduly callous or irresponsible, this might explain why. It certainly doesn't excuse the behavior, but it may at least help to understand it better.

 

I'd say it also helps to explain the opioid and benzo epidemics. These are plagues of iatrogenic injury. Some doctors may choose to break ranks and admit their mistakes or those of others (more likely their own), and it would be great to find one of those, but as of yet, I haven't personally found one.

 

Also, with an injury caused by a medication, it is not quite so clear how much burden the doctor bears. Some may choose to think of it as the fault of the pharmaceutical industry, and I would encourage your doctor to think this way. Then they may feel less responsibility, self-hatred, and resentment and be more helpful. But I think long term benzo prescription is pretty clearly an error. The problems with benzos have been well-established for quite some time now.

 

It's unfortunate that this has been an integral part of medical culture for so long now. We are just lucky to live in the internet age, where it's possible to understand it without having to be treated poorly by a large number of MDs and being confused as to why. I doubt whether they have thought seriously about the unbelievable amount of harm they perpetuate with this culture, otherwise it would have been abolished. Some must have ruminated on it, certainly, but the shame attached to it has resulted in a lack of discussion, and so little opportunity to change it. I expect it will only change once it is more openly debated, but the fact that it has persisted so long into the age of mass communication is a bit frightening.

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They also tend to assume that medicine knows all of the effects of medications and procedures on the body, so there is no such thing as unforeseen medical events (i am from a family of physicians, surgeons, etc, so I know this all too well). Medical studies are conducted on samples of people and results are extrapolated to the rest of the population. The problem with that is that it ignores individual variability, differences in gender, age, etc (which are highly influential), previous life circumstances (eg person who was born premature who may be therefore hypersensitive, or someone who has taken a certain medication previously that changes how their body metabolizes something, etc). THIS IS A HUGE PROBLEM, and not just for people on benzodiazepines, but for everyone who puts their trust in the medical community. It truly is a deep seeded cultural issue. And it needs to be changed. Thanks for sharing Op.
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They also tend to assume that medicine knows all of the effects of medications and procedures on the body, so there is no such thing as unforeseen medical events (i am from a family of physicians, surgeons, etc, so I know this all too well). Medical studies are conducted on samples of people and results are extrapolated to the rest of the population. The problem with that is that it ignores individual variability, differences in gender, age, etc (which are highly influential), previous life circumstances (eg person who was born premature who may be therefore hypersensitive, or someone who has taken a certain medication previously that changes how their body metabolizes something, etc). THIS IS A HUGE PROBLEM, and not just for people on benzodiazepines, but for everyone who puts their trust in the medical community. It truly is a deep seeded cultural issue. And it needs to be changed. Thanks for sharing Op.

 

No problem, appreciate the comment.

 

I agree that randomized controlled trials for drug approval are a mess. Generally the company conducting the trial is in charge of selecting participants and can be as selective as they want. Gary Greenberg mentioned that the placebo effect has been increasing in recent years in these trials and no one knows why. It makes sense that companies would choose people who are highly responsive to placebos if it correlated with being even more responsive to an active placebo. Then they are much more likely to have their drug approved, and the majority of benefit from drugs seems to be derived from a placebo effect anyway.

 

And a benzo for PTSD...wow. You had a bad doctor. Proven most definitely NOT to work for that.

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They also tend to assume that medicine knows all of the effects of medications and procedures on the body, so there is no such thing as unforeseen medical events (i am from a family of physicians, surgeons, etc, so I know this all too well). Medical studies are conducted on samples of people and results are extrapolated to the rest of the population. The problem with that is that it ignores individual variability, differences in gender, age, etc (which are highly influential), previous life circumstances (eg person who was born premature who may be therefore hypersensitive, or someone who has taken a certain medication previously that changes how their body metabolizes something, etc). THIS IS A HUGE PROBLEM, and not just for people on benzodiazepines, but for everyone who puts their trust in the medical community. It truly is a deep seeded cultural issue. And it needs to be changed. Thanks for sharing Op.

 

It depends on how the sample is chosen.  If it was chosen randomly and is representative of gender, age, disease and medication history, etc., this wouldn't be extrapolation.  It may be that the medication is used for someone that is not from the population targeted (i.e., "off-label use") and therefore carries more risk for that individual.

 

No problem, appreciate the comment.

 

I agree that randomized controlled trials for drug approval are a mess. Generally the company conducting the trial is in charge of selecting participants and can be as selective as they want. Gary Greenberg mentioned that the placebo effect has been increasing in recent years in these trials and no one knows why. It makes sense that companies would choose people who are highly responsive to placebos if it correlated with being even more responsive to an active placebo. Then they are much more likely to have their drug approved, and the majority of benefit from drugs seems to be derived from a placebo effect anyway.

 

And a benzo for PTSD...wow. You had a bad doctor. Proven most definitely NOT to work for that.

 

You seem to be referring to selection bias and how it is causing an increasing placebo effect.  I don't follow the rest of the explanation about choosing people who are highly responsive to placebos and how that correlates with being even more responsive to an active placebo.  Can you explain this more?  Separately, how would the benefit of a drug be derived from a placebo effect in any case?

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Seltzerer, it's just speculation on my part as to why the placebo effect has been increasing. There is no real reason why that should happen, so it may have been selected for. My conjecture is that they are selecting individuals who possess some characteristic that is predictive of responding strongly to an active placebo, and the fact that these people also respond more to an inert placebo is something companies are happy to live with.

 

As for the placebo effect providing the majority of benefits for many drugs (I should correct my wording: for certain conditions), using antidepressants as an example, you can see here that in the mean symptom reduction measured for independent trials, 80% of it is accounted for by the placebo (if you look at the chart about halfway down). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4592645/

 

All a company needs to do to get its drug approved is beat a placebo in a randomized controlled trial after proceeding through the animal testing and other phases. Actually tougher than you'd think since placebos have real biological effects: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2725026/

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Actually, it isn't speculation at all regarding lack of diversity in study samples. I have a degree in research, though not in the medical sciences, and it is a common theme amongst all types of human research that samples are disproportionately white, middle class, etc. Here is just a few links that support my case, though these are just ones I found during a very brief search: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4679830/ and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4670264/ and https://www.ncbi.nlm.nih.gov/m/pubmed/28055072/ . It is a very common misconception, in fact, that medical studies ARE extremely diverse. There are many practical reasons for lack of diversity, amongst those are a general mistrust of the medical establishment among minorities (for good reason: see the Tuskegee Syphilis Study, for example). Women are also disproportionately lacking in most human research, especially in medical studies. The list goes on.

 

And you are very close when it comes to random assignment. Random assignment ideally does cancel out variability in lifestyle factors, medical issues, genetics, etc, HOWEVER, the results of such research only tells you then what the drug does or doesn't do for the AVERAGE person (assuming the sample is truly representative of the population-- which gender and racial differences aside-- is still not often the case). Averages aren't super helpful for fully understanding the scope of a medicine's pros and cons, as we are able to see real life on this forum. Unfortunately, most physicians don't take a great number of classes on research methods and so aren't really aware of the nuances of research and it's real life implications. If I wasn't on mobile, I could go on for days about how risky this all is especially in a field with such high stakes like medicine (haha so probably better that I'm on mobile!).

 

It wouldn't surprise me regarding placebo effects, but those sorts of things should be controlled for with an actual placebo condition and a double blind, randomized methodology. But when scientists are paid by research companies to find results,, anything can happen. Remember also what Mark Twain famously said: "There are lies, damned lies, and statistics." You can truly find whatever answers you want using stats if you know the right way to run your analyses.

 

So there are so many huge holes in this process from start to finish-- from research study to diagnosis-- and, unfortunately, so many people fall through them. Like us.

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Data_Guy, this sentence doesn't make sense to me: "It makes sense that companies would choose people who are highly responsive to placebos if it correlated with being even more responsive to an active placebo."  Did you leave something out?

 

 

 

Actually, it isn't speculation at all regarding lack of diversity in study samples. I have a degree in research, though not in the medical sciences, and it is a common theme amongst all types of human research that samples are disproportionately white, middle class, etc. Here is just a few links that support my case, though these are just ones I found during a very brief search: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4679830/ and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4670264/ and https://www.ncbi.nlm.nih.gov/m/pubmed/28055072/ . It is a very common misconception, in fact, that medical studies ARE extremely diverse. There are many practical reasons for lack of diversity, amongst those are a general mistrust of the medical establishment among minorities (for good reason: see the Tuskegee Syphilis Study, for example). Women are also disproportionately lacking in most human research, especially in medical studies. The list goes on.

 

And you are very close when it comes to random assignment. Random assignment ideally does cancel out variability in lifestyle factors, medical issues, genetics, etc, HOWEVER, the results of such research only tells you then what the drug does or doesn't do for the AVERAGE person (assuming the sample is truly representative of the population-- which gender and racial differences aside-- is still not often the case). Averages aren't super helpful for fully understanding the scope of a medicine's pros and cons, as we are able to see real life on this forum. Unfortunately, most physicians don't take a great number of classes on research methods and so aren't really aware of the nuances of research and it's real life implications. If I wasn't on mobile, I could go on for days about how risky this all is especially in a field with such high stakes like medicine (haha so probably better that I'm on mobile!).

 

It wouldn't surprise me regarding placebo effects, but those sorts of things should be controlled for with an actual placebo condition and a double blind, randomized methodology. But when scientists are paid by research companies to find results,, anything can happen. Remember also what Mark Twain famously said: "There are lies, damned lies, and statistics." You can truly find whatever answers you want using stats if you know the right way to run your analyses.

 

So there are so many huge holes in this process from start to finish-- from research study to diagnosis-- and, unfortunately, so many people fall through them. Like us.

 

 

Takingontitration, I can't respond to this.  There are a lot of issues here not the least of which is this statement: "Random assignment ideally does cancel out variability."  ???

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Data_Guy, this sentence doesn't make sense to me: "It makes sense that companies would choose people who are highly responsive to placebos if it correlated with being even more responsive to an active placebo."  Did you leave something out?

 

 

Yes, my brain wasn't working too well last night. It still isn't, actually. Trying to get used to life without carbohydrates.

 

I meant companies likely choose people who are highly responsive to an active placebo, which is likely correlated with people who are highly responsive to regular placebos. Again, just speculation on my part.

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Seltzerer, with all due respect, I'm also working on half functioning brain due to withdrawal, so perhaps I'm also not explaining myself correctly. But I am curious as to the issue you have with this. Please do elaborate, if you don't mind, since you feel that I am making such sweeping errors with my statements.

 

The purpose of random assignment is to try to make assigned groups as overall similar as possible so that no extraneous variable, besides treatment, are therefore seen as responsible for differences in outcomes. That is textbook research design. This is why experimental designs are the gold standard of research methods, because they allow us control for other variables as opposed to correlational studies or quasi experimental designs which do not.

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Seltzerer, with all due respect, I'm also working on half functioning brain due to withdrawal, so perhaps I'm also not explaining myself correctly. But I am curious as to the issue you have with this. Please do elaborate, if you don't mind, since you feel that I am making such sweeping errors with my statements.

 

The purpose of random assignment is to try to make assigned groups as overall similar as possible so that no extraneous variable, besides treatment, are therefore seen as responsible for differences in outcomes. That is textbook research design. This is why experimental designs are the gold standard of research methods, because they allow us control for other variables as opposed to correlational studies or quasi experimental designs which do not.

 

That’s ok, Takingontitration.  We went from a video about provider culture surrounding medical mistakes to patients on BB getting harmed bc they’re not represented in medical research studies with a whole host of broad case arguments about doctor denial to patients, pharma paying researchers to find whatever answers they want, selecting patients based on their placebo response, averages, why we use random random sampling, and on.  Sorry, this discussion is not for me and I shouldn’t have weighed in. I don’t want to try and disentangle all the arguments that are being made here any further.  Perhaps I’ll run into you elsewhere on the forum where we can get at maybe one or two of these things from a different angle.

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Seltzerer, I'm sorry if my frustration caused you to end the discourse. I'm in the midst of a really bad spell here with my taper, unfortunately, and it's truly remarkable how quickly anything at all can frustrate me. It's hard to believe that I was a very mild mannered person before  compared to the stressed out person that I've become. Hoping there is freedom and health on the other side. On that note, my frustration wasn't about you or your disagreements, but about how there are too many places where I saw holes through which patients could slip. That being said, obviously everyone is doing the bet that they can. This medicine doesn't harm everyone who uses it, it's just unfortunate that there are some people who do have issues. I look forward to discussing other topics with you --hopefully with me in a better place-- at another time.
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Seltzerer, I'm sorry if my frustration caused you to end the discourse. I'm in the midst of a really bad spell here with my taper, unfortunately, and it's truly remarkable how quickly anything at all can frustrate me. It's hard to believe that I was a very mild mannered person before  compared to the stressed out person that I've become. Hoping there is freedom and health on the other side. On that note, my frustration wasn't about you or your disagreements, but about how there are too many places where I saw holes through which patients could slip. That being said, obviously everyone is doing the bet that they can. This medicine doesn't harm everyone who uses it, it's just unfortunate that there are some people who do have issues. I look forward to discussing other topics with you --hopefully with me in a better place-- at another time.

 

Hi, Takingontitration.  No need to apologize and this is absolutely understandable.  This drug is a horror show and I get it and have been through it and am still finding my way out after 7 months off.  I've been interacting with Data Guy elsewhere about the need for more concrete, well-reasoned arguments about the problems with medical research because I see a lot of torching of all of it in one go and that's just not useful or helpful to me.  There are many problems for sure (there are many successes too) but my stance is not to throw out the baby with the bathwater.  At least not until I have more definitive information.  The other side of this is as you're experiencing and I'm sure you can see from posts elsewhere.  People are hurt and feel betrayed and misled and with very good reason and they want to vent and express their anger and frustration with the system as well they should be able to especially with others who've been harmed in the same way.  There is room for all of it here thankfully.

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You make very good points. I like the "don't throw out the baby with the bath water" one, as it can be easy to become so angry and antagonistic with the whole process while one is in the throes of withdrawal. That is counterproductive and truly benefits no one. I am thankful for this community that accepts me as I currently am, yet gives me encouragement to move beyond that.

 

Data guy (I think it was) made an interesting point about benzos not even being effective for PTSD, which was what I was prescribed them for. It's hard not to become so bitter when I hear things like that. How are you healing? Obviously you aren't back to normal, but are you in a better place?

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You make very good points. I like the "don't throw out the baby with the bath water" one, as it can be easy to become so angry and antagonistic with the whole process while one is in the throes of withdrawal. That is counterproductive and truly benefits no one. I am thankful for this community that accepts me as I currently am, yet gives me encouragement to move beyond that.

 

Data guy (I think it was) made an interesting point about benzos not even being effective for PTSD, which was what I was prescribed them for. It's hard not to become so bitter when I hear things like that. How are you healing? Obviously you aren't back to normal, but are you in a better place?

 

Much better place. Mostly mental symptoms with benzo belly still and some back muscle concerns. Still struggling with w/d related insomnia, intrusive thoughts, social anxiety, cognitive issues. I was on 12+ years.

 

I haven’t heard that it’s typically prescribed for PTSD but it’s very effective in controlling anxiety and that could be from past trauma.

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Excellent thead. I just noticed it.

 

Likely, while doctors can do good I suspect that at best that is rivaled by the amount of iatrogenic harm.

When doctors feel like they are part of an elite, with special insight in people, justified to decide over life and death, under pressure to make the right decisions under (collectively) self imposed time constraints and being trained by the drug industry a lot will be done wrong (medical errors) and go wrong (iatrogenic harm).

 

Does anyone know a website/forum about iatrogenesis (not run by doctors) ?

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You make very good points. I like the "don't throw out the baby with the bath water" one, as it can be easy to become so angry and antagonistic with the whole process while one is in the throes of withdrawal. That is counterproductive and truly benefits no one. I am thankful for this community that accepts me as I currently am, yet gives me encouragement to move beyond that.

 

Data guy (I think it was) made an interesting point about benzos not even being effective for PTSD, which was what I was prescribed them for. It's hard not to become so bitter when I hear things like that. How are you healing? Obviously you aren't back to normal, but are you in a better place?

 

Much better place. Mostly mental symptoms with benzo belly still and some back muscle concerns. Still struggling with w/d related insomnia, intrusive thoughts, social anxiety, cognitive issues. I was on 12+ years.

 

I haven’t heard that it’s typically prescribed for PTSD but it’s very effective in controlling anxiety and that could be from past trauma.

 

I have CPTSD, which I was not aware of when I was prescribed clonazepam, and it has made the PTSD symptoms 1000-fold worse.

If only I had known all of this prior to taking the benzo.  Disgusting.

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WOW, a powerful TED talk!!!

 

Thank you, Data_Guy, for posting it!

 

No problem, Terry. It is mostly from a doctor's perspective, but we know what effect it has on patients.

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Excellent thead. I just noticed it.

 

Likely, while doctors can do good I suspect that at best that is rivaled by the amount of iatrogenic harm.

When doctors feel like they are part of an elite, with special insight in people, justified to decide over life and death, under pressure to make the right decisions under (collectively) self imposed time constraints and being trained by the drug industry a lot will be done wrong (medical errors) and go wrong (iatrogenic harm).

 

Does anyone know a website/forum about iatrogenesis (not run by doctors) ?

 

Hey liberty. There is Rxisk.org, but I think you already know that site. Basically a drug-centric iatrogenisis site. I really like Healy. He seems to be among the strongest critics of modern medicine's obsession with pharmaceuticals.

 

I don't really have any other good sites, but there are quite a few good books that critique modern medicine. I have a whole bunch that I still need to read. There is Gotzsche's "Deadly Medicine and Organized Denial: How Big Pharma Has Corrupted Healthcare", which is good. Most of Healy's books are excellent (Pharmageddon, Let Them Eat Prozac etc.).

 

I've also heard the BMJ described as "An Island of Sanity", in that their research is generally not influenced by the pharmaceutical industry and they are actually concerned with improving human health and not $$$$. There are also journals like Drug Safety, The International Journal of Risk and Safety in Medicine, The Journal of Pharmacovigilance etc.

 

I actually have the same suspicion as you, that modern medicine might be doing more harm than good, due mostly to pharmaceutical industry influence. But it would take a huge analysis to show that the costs are outweighing the benefits. Might be better off analyzing individual specialties. Psychiatry is definitely doing more harm than good, that's an easy one. Their drugs completely mess up the nervous system, they have no idea how they work, they are only tested for short periods but physicians tend to leave patients on them long term, they can cause physical dependence and horrible withdrawal syndromes, not to mention all sorts of health problems, and their efficacy is very limited. On top of all this, the profession does absolutely nothing to try and limit the damage. It's a disgrace. As much as I dislike modern "callout culture", I do think medicine could use a serious raking over the coals. The subservience to the drug industry, the gaslighting, the lack of oversight, the abuse of vulnerable people, the discrimination against certain groups (women, those deemed mentally ill) all seem to firmly embedded within the culture.

 

I would be interested in an iatrogenesis site specific to doctors, if you find one. There does seem to be a sort of personality "type" that is attracted to medicine. Conformist, conservative, authoritarian. Which makes sense. If you think about being a doctor, it is 1) Probably the most respected profession and so confers high social status  2) One of the highest paying jobs with the best job security. In Canada it seems nearly impossible to lose your medical licence. So if you are hard-working, can withstand a lot of stress, are risk averse but fairly smart and want to impress friends and family with your social responsibility, it is the ideal profession. I'm not saying all doctors fit this description, but there does seem to be an awful lot of conformist authoritarians in the field.

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WOW, a powerful TED talk!!!

 

Thank you, Data_Guy, for posting it!

 

No problem, Terry. It is mostly from a doctor's perspective, but we know what effect it has on patients.

 

In other words, for the patient, don't blindly listen to the doctor without making a critical assessment. I have problems in that area because I was taught a long time ago to respect authority, and even though a part of me wants to say something, I remain quiet at times. This is NOT GOOD.

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WOW, a powerful TED talk!!!

 

Thank you, Data_Guy, for posting it!

 

No problem, Terry. It is mostly from a doctor's perspective, but we know what effect it has on patients.

 

In other words, for the patient, don't blindly listen to the doctor without making a critical assessment. I have problems in that area because I was taught a long time ago to respect authority, and even though a part of me wants to say something, I remain quiet at times. This is NOT GOOD.

 

I have issues with this, too, because I feel as though if we do not agree with a doctor, then we are labeled as ¨non-compliant¨.

 

When, realistically, if a patient has concerns, voicing them is the best way forward. 

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I agree, purpleheart. I'm afraid of being noncompliant, also, and having that put in my chart. But how can you feel that you're getting the best care unless you say something?
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I agree, purpleheart. I'm afraid of being noncompliant, also, and having that put in my chart. But how can you feel that you're getting the best care unless you say something?

 

I think being seen as "non-compliant" is a legitimate fear. If the doctor thinks you are uncooperative or "don't want to get better", they may just kind of stop trying. I believe that's what happened with my doctor. I remember asking her if she thought the K was causing my stomach problems and she said "no, I think it's psychosomatic" and wrote that on my medical record. Then a couple years later I actually looked up the official FDA info page and saw that it did indeed cause gastritis, even in a short trial. I had stomach problems for a very long time, and she never even bothered to check the drug SX. That was a bit of an awakening for me.

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I've been thinking about posting some 'stuff' about iatrogeneis and the medical world for some time. Let's say I have my own voice ...

But in the modern day and age, I could easily be one voice amongst billions ... With social media, algos, google ranking ... it's easy to get drowned out.

 

Any ideas, websites, anything ? I'm not active on Facebook or any of those social media. Must be a freak ...

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