3 ms·

I'm going to assume that you've never been in a situation where someone was offering you a course of treatment that had a chance of being 50% successful. Those

I'm going to assume that you've never been in a situation where someone was offering you a course of treatment that had a chance of being 50% successful. Those are absolutely terrible odds. To act like it's the obvious choice is incredibly insulting to anyone who seeks alternatives. 50% is not "advanced". It's medieval. Yes, there are quacks, but there is also cutting edge science that is not widely understood. You are blaming the people the victim chose to listen to, and therefore, you are blaming the victims choices, claiming that they were a "conspiracy theorist". You are blaming the victim.

dredmorbius 6y ago
The case that comes to mind for me was a very close friend who faced a disease with one in five odds of long-term survival, three decades ago. They were among the other four. I've monitored progress on medical knowledge and treatment of the condition over the ensuing decades. What I've learned is that: - It's now possible to directly detect the genetic marker of the condition. We have improved detection and precision of Dx. - The actual therapy ... is effectively unchanged. The chemo and radiation therapies they'd received were essentially unchanged over the preceding two decades, and were based on chemicals and mechanisms already in use in the 1950s (though dosing, quality, and side-effects mitigation are somewhat improved). - The compounds themselves date to World War One, poison gas, and human experiments now considered crimes against humanity. History is interesting.... - These treatments remain largely unchanged in the decades since my friend's death. And five-year mortality for the condition remains about 80%. That's the science: fifty to seventy years of effectively no progress. Not for want of trying. From a point of view of assuaging Past Me that we'd pursued and received not only the best of all possible treatment, but hadn't missed out on any late-breaking developments, this information is comforting. Operating in the ultimate domain of uncertainty, of what the future might bring, we'd made the best decisions. And yet at the time, in an era pre-dating the Web (though I did at the time have access to the pre-Web Internet), "helpful" people offerred various "nontraditional" therapies, the most frequent revolving around "laetrile" (https://en.wikipedia.org/wiki/Amygdalin#Laetrile https://en.wikipedia.org/wiki/Amygdalin#Laetrile), acyanide-based compound repeatedly demonstrated to have no therapeutic effectiveness, and multiple risks, since the 1960s. Despite this, treatment "clinics" had sprung up, notably in the Caribbean and in Mexico, offering the "treatment", at a steep fee. (Actor Steve McQueen is among those who'd fallen prey to the scam.) I ran interference for those closer to my friend by intercepting, assessing, and discarding any such literature. In the heat of fear, uncertainty, confusion, doubt, and guilt that are the hallmarks of dealing with grave illness, adding more useless malicious and fraudulent bullshit to the informational mix would have been actively harmful, both medically for the patient and psychologically for them and all caregivers. And I remain glad I did.
- wavepruner 6y ago
  I'm sorry you lost your friend. It sounds like that was a long battle and it has weighed on you ever since. I am glad you were there to support them. I know from personal experience how obnoxious it can be to be bombarded with this-and-that alternative therapy. But this lack of progress is what I find so frustrating, along with the hostility towards anyone who is trying to change that. Many sick people are willing to take a risk to progress the science. The insistence on 100% safety and unpractical clinical trials that only allow for patent-able medicines is ultimately killing more people by stalling progress. We haven't really cured a major disease in over half a century. That needs to change. If a sick person claims that some sort of alternative therapy cured them, then there is absolutely _something_ there. It cannot always be explained away by the placebo effect, as the placebo effect is temporary. You're not going to cure a chronic disease with the placebo effect. These are important data points that need to be discussed. And a sick person should be able to discuss it regardless of their credentials. Their first-hand experience is valuable and contains objective truth. But I agree that to claim that since an alternative therapy cured one it must cure all is irresponsible. Often times we do not even know what the root cause of an illness is, and until you do, just because two people have the same symptoms does not mean they have the same disease. There's also the issue of co-morbid diseases. There is rarely a one-size-fits-all approach (and it's seriously unfortunate that modern medicine insists that one treatment must work for everyone, otherwise it's quackery).
  - dredmorbius 6y ago
    There are numerous attempts, and risks, being taken to advance the science. Sometimes the problems are simply hard, and solutions, if they exist at all, extraordinarily elusive. In recent years, genetic engineering advances such as CRISPR do put the possibility of a direct cure within realm of possibility, though of course that may also prove a false hope. Other close friends have worked in the pharmaceutical and clinical trials sectors, I've a strong awareness of what goes on there. There are numerous avenues which have been, and remain to be, explored. My friend themselves participated in several novel therapies once established protocols proved insufficient. We pursued all clinically plausible options, to the point of exhaustion (treatments themselves are often tremendously debilitating), even where not yet proven. The hostility is not towards "anyone who is trying to change that". There is all the encouragement on Earth for such efforts. Watching masses of growths grow and consome someone you've held quite dear is not easily forgotten. But those who exploit, possibly innocently but all too often with sheer uncaring deliberateness, the fear, ignorance, guilt, grief, and desperation of patients and thei loved ones beyond all hope is the one thing I've seen uglier than those growths. The laetrile pamphlets I intercepted and burned 30 years ago went to great lengths to justify their clinics' and promoters' opposition to structured clinical studies, on the grounds that this would deny ssome patients (the control group) useful therapy. But this omits two key facts: 1. There've been numerous studies of the compounds and there is no clinical sign that of medical benefit. For nearly 60 years now. 2. Refusing to certify and demonstrate the compounds withholds the treatment, if beneficial, from vastly more beneficiaries. Of course, as the treatment is a fraud, this harm is fictional, but it. utterly undermines the fraudster's arguments. Their overwhelming insincerity aand self-serving aims are manifest. There are several other common fallacies in your response I won't bother addressing, save to say in balance you're accomplishing far more harm than good here, and if you have the least bit of sense or decency you'll stop.

dredmorbius 6y ago

The case that comes to mind for me was a very close friend who faced a disease with one in five odds of long-term survival, three decades ago. They were among the other four. I've monitored progress on medical knowledge and treatment of the condition over the ensuing decades. What I've learned is that: - It's now possible to directly detect the genetic marker of the condition. We have improved detection and precision of Dx. - The actual therapy ... is effectively unchanged. The chemo and radiation therapies they'd received were essentially unchanged over the preceding two decades, and were based on chemicals and mechanisms already in use in the 1950s (though dosing, quality, and side-effects mitigation are somewhat improved). - The compounds themselves date to World War One, poison gas, and human experiments now considered crimes against humanity. History is interesting.... - These treatments remain largely unchanged in the decades since my friend's death. And five-year mortality for the condition remains about 80%. That's the science: fifty to seventy years of effectively no progress. Not for want of trying. From a point of view of assuaging Past Me that we'd pursued and received not only the best of all possible treatment, but hadn't missed out on any late-breaking developments, this information is comforting. Operating in the ultimate domain of uncertainty, of what the future might bring, we'd made the best decisions. And yet at the time, in an era pre-dating the Web (though I did at the time have access to the pre-Web Internet), "helpful" people offerred various "nontraditional" therapies, the most frequent revolving around "laetrile" (https://en.wikipedia.org/wiki/Amygdalin#Laetrile https://en.wikipedia.org/wiki/Amygdalin#Laetrile), acyanide-based compound repeatedly demonstrated to have no therapeutic effectiveness, and multiple risks, since the 1960s. Despite this, treatment "clinics" had sprung up, notably in the Caribbean and in Mexico, offering the "treatment", at a steep fee. (Actor Steve McQueen is among those who'd fallen prey to the scam.) I ran interference for those closer to my friend by intercepting, assessing, and discarding any such literature. In the heat of fear, uncertainty, confusion, doubt, and guilt that are the hallmarks of dealing with grave illness, adding more useless malicious and fraudulent bullshit to the informational mix would have been actively harmful, both medically for the patient and psychologically for them and all caregivers. And I remain glad I did.

wavepruner 6y ago
I'm sorry you lost your friend. It sounds like that was a long battle and it has weighed on you ever since. I am glad you were there to support them. I know from personal experience how obnoxious it can be to be bombarded with this-and-that alternative therapy. But this lack of progress is what I find so frustrating, along with the hostility towards anyone who is trying to change that. Many sick people are willing to take a risk to progress the science. The insistence on 100% safety and unpractical clinical trials that only allow for patent-able medicines is ultimately killing more people by stalling progress. We haven't really cured a major disease in over half a century. That needs to change. If a sick person claims that some sort of alternative therapy cured them, then there is absolutely _something_ there. It cannot always be explained away by the placebo effect, as the placebo effect is temporary. You're not going to cure a chronic disease with the placebo effect. These are important data points that need to be discussed. And a sick person should be able to discuss it regardless of their credentials. Their first-hand experience is valuable and contains objective truth. But I agree that to claim that since an alternative therapy cured one it must cure all is irresponsible. Often times we do not even know what the root cause of an illness is, and until you do, just because two people have the same symptoms does not mean they have the same disease. There's also the issue of co-morbid diseases. There is rarely a one-size-fits-all approach (and it's seriously unfortunate that modern medicine insists that one treatment must work for everyone, otherwise it's quackery).
- dredmorbius 6y ago
  There are numerous attempts, and risks, being taken to advance the science. Sometimes the problems are simply hard, and solutions, if they exist at all, extraordinarily elusive. In recent years, genetic engineering advances such as CRISPR do put the possibility of a direct cure within realm of possibility, though of course that may also prove a false hope. Other close friends have worked in the pharmaceutical and clinical trials sectors, I've a strong awareness of what goes on there. There are numerous avenues which have been, and remain to be, explored. My friend themselves participated in several novel therapies once established protocols proved insufficient. We pursued all clinically plausible options, to the point of exhaustion (treatments themselves are often tremendously debilitating), even where not yet proven. The hostility is not towards "anyone who is trying to change that". There is all the encouragement on Earth for such efforts. Watching masses of growths grow and consome someone you've held quite dear is not easily forgotten. But those who exploit, possibly innocently but all too often with sheer uncaring deliberateness, the fear, ignorance, guilt, grief, and desperation of patients and thei loved ones beyond all hope is the one thing I've seen uglier than those growths. The laetrile pamphlets I intercepted and burned 30 years ago went to great lengths to justify their clinics' and promoters' opposition to structured clinical studies, on the grounds that this would deny ssome patients (the control group) useful therapy. But this omits two key facts: 1. There've been numerous studies of the compounds and there is no clinical sign that of medical benefit. For nearly 60 years now. 2. Refusing to certify and demonstrate the compounds withholds the treatment, if beneficial, from vastly more beneficiaries. Of course, as the treatment is a fraud, this harm is fictional, but it. utterly undermines the fraudster's arguments. Their overwhelming insincerity aand self-serving aims are manifest. There are several other common fallacies in your response I won't bother addressing, save to say in balance you're accomplishing far more harm than good here, and if you have the least bit of sense or decency you'll stop.