3 ms·

On the contrary, I shared this quote having full knowledge of the cost and complexity and political barriers, having both studied the industry academically and

On the contrary, I shared this quote having full knowledge of the cost and complexity and political barriers, having both studied the industry academically and being personally close to medical practitioners engaged in the research and implementation of new treatments. I think all suggestion of "alternative remedies" is dangerous, since it opens the door to those preying on desperation to sell false hope. I have an active dislike of the phrase, because it fails to capture just how harmful they can be, and how rarely they are actual remedies. "Unproven interventions" might be a better name. More precisely, they also serve to mask those treatments deserving of more research that might actually have some potential, because such signal is lost in the torrential noise of snake oil and quackery. I join your criticism of the externalities in the US market-led system that incentivise research into drugs of symptomatic relief rather than cures. Nevertheless I believe that is a short-term systemic malfunction, and in any event is not a severe problem elsewhere where drug pricing is regulated. Large amounts of money and time are routinely allocated around the world for fundamental research into many difficult and poorly understood conditions. Pointing out that medicine can't treat everything is fine, because if it could we wouldn't need more research. But claiming the research doesn't get done, that's simply untrue.

tomhoward 9y ago
I think all suggestion of "alternative remedies" is dangerous, since it opens the door to those preying on desperation to sell false hope. I'm with you on practitioners who charge thousands of dollars offering to cure terminal cancer with carrot juice and coffee enemas. But this is a very small segment of the industry, and from what I've seen, anyone who does that for any amount of time gets regulated or shamed out of business. Most natural health practice is nothing of that sort. It's things like diet/nutrition, exercise, stress/trauma therapy; all things that have significant evidence of being beneficial. All the treatments I've tried in my journey to get well fit into this category: low-risk treatments for non-life-threatening conditions, that just support the mind and body to heal and strengthen naturally over the long term. I've been doing it for nearly 10 years and in that time my life has utterly transformed. Do you have any objection to this that doesn't rely on dismissing every health provider without a medical degree as a dangerous charlatan?
- Mz 9y ago
  Most natural health practice is nothing of that sort. It's things like diet/nutrition, exercise, stress/trauma therapy; all things that have significant evidence of being beneficial. All the treatments I've tried in my journey to get well fit into this category: low-risk treatments for non-life-threatening conditions, that just support the mind and body to heal and strengthen naturally over the long term. This has been my experience as well. MCT oil has long been medically recommended (i.e. by actual doctors) for serious gut issues, such as stomach cancer and cystic fibrosis. It is not routinely recommended by doctors as a standard treatment for CF, but it is popular in the CF community. It isn't not a drug. It is not an unproven treatment. It has a solid track record. But, it seems to not be actively promoted in part because it isn't a drug. It is cheap and effective, but no miracle cure. What gets actively touted are new drugs that cost $250k or more annually and are only effective on about 5 percent of patients. There is no big fortune to be made in telling seriously ill people "If you eat better and avoid triggers, you can have higher quality of life, need fewer drugs, etc." There is a huge fortune to be made on these extremely niche drugs with insane price tags. So, doctors and other business people often promote the things that are lining their pockets, rather than the things that help patients improve their quality of life at little cost and low risk.
- inopinatus 9y ago
  Nutrition. Exercise. Stress management. I think these are mainstream health practices. There are practitioners with other qualifications. Although I've met physios with some peculiar ideas that subsequently turned out to be have a very high proportion of adverse effects (e.g. spinal adjustments). My message is consistent, I hope: try what you will, but never pretend to expertise, and steer clear of recommending or suggesting anything to anyone, because at that moment one becomes a snake-oil peddler and are risking harm to someone else. Recognise that even medical practitioners are taught not to treat themselves or family because you cannot, cannot be objective about it. I do not express an opinion on your personal journey, except to say that despite not knowing you from Adam it's still gladdening to learn that you are feeling better.
  - Mz 9y ago
    Nutrition. Exercise. Stress management. I think these are mainstream health practices. If you have a very serious medical condition, like cancer, and you talk to a doctor about things like taking vitamins, most of them will pooh-pooh it as if any impact it has is merely a placebo effect. Using nutrition, exercise and stress management as part of your defense in the face of something that doctors don't really know how to treat gets dismissed and attacked and basically lumped in with snake oil. In fact, you are basically doing this yourself with your wild misquotes of people here in service of some agenda that has nothing whatsoever to do with trying to comprehend anything being said here, as best I can tell.
stordoff 9y ago
IMO, it's an unhelpful quote because it's only useful for alternative 'treatments' that have been shown not to work (beyond placebo). It largely ignores the fairly large gray area of treatments that have shown promise but haven't been extensively studied enough to become part of mainstream medical practice. If no other treatments are available, investigating these options may be a perfectly rational thing to do (with the appropriate input from a genuine medical professional, not a random/unqualified 'alternative' practitioner). Personally, I use caffeine, in addition to an SSRI, as an OCD treatment, based on a single, small (n=12 for the caffeine group)[0] clinical trial. Clearly the evidence isn't there to declare it a viable treatment -- it could easily be placebo[1] and/or prove to be detrimental for other patients -- but my doctor and I concluded that the risk of trialling it was close enough to zero in my specific circumstances to give it a shot. Thus far, it has provided a noticeable subjective improvement day-to-day. (Note to any other OCD patients - I'm NOT suggesting you should try this, in part due to the anxiogenic properties of caffeine) Of course that doesn't mean we should just throw open the doors to the various snake-oil pushers (especially where well-proven interventions exist), but IMO going too far in the other direction would also be a mistake. [0] https://www.ncbi.nlm.nih.gov/pubmed/19573497 https://www.ncbi.nlm.nih.gov/pubmed/19573497 [1] Something I personally doubt, as other alternative treatments (including those I have suggested) have had either no effect or worsened the condition, but of course there is no way for me to rigorously test this.

tomhoward 9y ago

I think all suggestion of "alternative remedies" is dangerous, since it opens the door to those preying on desperation to sell false hope. I'm with you on practitioners who charge thousands of dollars offering to cure terminal cancer with carrot juice and coffee enemas. But this is a very small segment of the industry, and from what I've seen, anyone who does that for any amount of time gets regulated or shamed out of business. Most natural health practice is nothing of that sort. It's things like diet/nutrition, exercise, stress/trauma therapy; all things that have significant evidence of being beneficial. All the treatments I've tried in my journey to get well fit into this category: low-risk treatments for non-life-threatening conditions, that just support the mind and body to heal and strengthen naturally over the long term. I've been doing it for nearly 10 years and in that time my life has utterly transformed. Do you have any objection to this that doesn't rely on dismissing every health provider without a medical degree as a dangerous charlatan?

Mz 9y ago
Most natural health practice is nothing of that sort. It's things like diet/nutrition, exercise, stress/trauma therapy; all things that have significant evidence of being beneficial. All the treatments I've tried in my journey to get well fit into this category: low-risk treatments for non-life-threatening conditions, that just support the mind and body to heal and strengthen naturally over the long term. This has been my experience as well. MCT oil has long been medically recommended (i.e. by actual doctors) for serious gut issues, such as stomach cancer and cystic fibrosis. It is not routinely recommended by doctors as a standard treatment for CF, but it is popular in the CF community. It isn't not a drug. It is not an unproven treatment. It has a solid track record. But, it seems to not be actively promoted in part because it isn't a drug. It is cheap and effective, but no miracle cure. What gets actively touted are new drugs that cost $250k or more annually and are only effective on about 5 percent of patients. There is no big fortune to be made in telling seriously ill people "If you eat better and avoid triggers, you can have higher quality of life, need fewer drugs, etc." There is a huge fortune to be made on these extremely niche drugs with insane price tags. So, doctors and other business people often promote the things that are lining their pockets, rather than the things that help patients improve their quality of life at little cost and low risk.
inopinatus 9y ago
Nutrition. Exercise. Stress management. I think these are mainstream health practices. There are practitioners with other qualifications. Although I've met physios with some peculiar ideas that subsequently turned out to be have a very high proportion of adverse effects (e.g. spinal adjustments). My message is consistent, I hope: try what you will, but never pretend to expertise, and steer clear of recommending or suggesting anything to anyone, because at that moment one becomes a snake-oil peddler and are risking harm to someone else. Recognise that even medical practitioners are taught not to treat themselves or family because you cannot, cannot be objective about it. I do not express an opinion on your personal journey, except to say that despite not knowing you from Adam it's still gladdening to learn that you are feeling better.
- Mz 9y ago
  Nutrition. Exercise. Stress management. I think these are mainstream health practices. If you have a very serious medical condition, like cancer, and you talk to a doctor about things like taking vitamins, most of them will pooh-pooh it as if any impact it has is merely a placebo effect. Using nutrition, exercise and stress management as part of your defense in the face of something that doctors don't really know how to treat gets dismissed and attacked and basically lumped in with snake oil. In fact, you are basically doing this yourself with your wild misquotes of people here in service of some agenda that has nothing whatsoever to do with trying to comprehend anything being said here, as best I can tell.

stordoff 9y ago

IMO, it's an unhelpful quote because it's only useful for alternative 'treatments' that have been shown not to work (beyond placebo). It largely ignores the fairly large gray area of treatments that have shown promise but haven't been extensively studied enough to become part of mainstream medical practice. If no other treatments are available, investigating these options may be a perfectly rational thing to do (with the appropriate input from a genuine medical professional, not a random/unqualified 'alternative' practitioner). Personally, I use caffeine, in addition to an SSRI, as an OCD treatment, based on a single, small (n=12 for the caffeine group)[0] clinical trial. Clearly the evidence isn't there to declare it a viable treatment -- it could easily be placebo[1] and/or prove to be detrimental for other patients -- but my doctor and I concluded that the risk of trialling it was close enough to zero in my specific circumstances to give it a shot. Thus far, it has provided a noticeable subjective improvement day-to-day. (Note to any other OCD patients - I'm NOT suggesting you should try this, in part due to the anxiogenic properties of caffeine) Of course that doesn't mean we should just throw open the doors to the various snake-oil pushers (especially where well-proven interventions exist), but IMO going too far in the other direction would also be a mistake. [0] https://www.ncbi.nlm.nih.gov/pubmed/19573497 https://www.ncbi.nlm.nih.gov/pubmed/19573497 [1] Something I personally doubt, as other alternative treatments (including those I have suggested) have had either no effect or worsened the condition, but of course there is no way for me to rigorously test this.