8 ms·

Both inspiring and a little worrying. I agree that democratisation of medicine is a helpful process and think that it is great that sufferers of diseases have

• tomhoward 14y ago
  Anyone with a half rational brain should be alarmed by this statement. I'm much more alarmed by that statement. I'm not here to debate the efficacy of TCM or homeopathy, that's a waste of everyone's time. But the guy has clearly done a huge amount of research and drawn on whatever expertise he could determine might contribute to his quest to save his life, and he deserves better than this kind of middlebrow dismissal. (See http://news.ycombinator.com/item?id=4692794 http://news.ycombinator.com/item?id=4692794)
  • jsaxton86 14y ago
    To be fair to the original poster, you didn't post his entire statement. If you look at the entire statement, he made several intelligent points about TCM, any one of which could have been the starting point for an intelligent conversation if you disagreed with what he had to say. Lots of comments on HN could be considered a "middlebrow dismissal," but this is not one of them. On another note, the original statement in question kind of reminds me of a Steve Jobs quote: "I really didn't want them to open up my body, so I tried to see if a few other things would work."
    • tomhoward 14y ago
      He didn't make several intelligent points about TCM - he made a single dogmatic one, which was patronising and contemptuous to anyone who's actually interested in the substance of the original post.
  • robbiep 14y ago
    My point is that this man is searching for a cure. His form of cure is a beautiful, inclusive, democratic thing (I mean that with no sarcasm) including art, doctors, other patients, support from other run of the mill humans, and the treatment opinions and recommendations of people that are formally or informally trained in treatments that are not scientifically valid. Your suggestion that I am undertaking 'middlebrow dismissal' of this man's work and passion misses the point of my post entirely. Which I will reiterate for you, is not that I disagree with this man's idea, or the general principle, but that there is no filter or adjustment in place to take treatment suggestions and approximate a 'better treatment' A deeper point you raise is, does every point of view have merits, and should it be given the same airtime as all other views. This is particularly important when someone's views begin attracting a lot of attention: The good, or valid, ideas should be supported, and the invalid suggestions should be weeded out by discourse. I believe that any patient has the rights to make their own treatment choices, and they should not be judged as a result of those choices (Unless they are a parent deciding for an incompetent child, however there are many legal cases that establish when this should be possible) But this patient is influential; what he says will influence other patients with his condition; I have 2 issues here: 1) It breeds 'back door' legitimacy for fraudulent treatments 2) Some alternative-inclined patients may choose to opt solely for those treatments, which will kill them. So this error with his model should be pointed out, that a more perfect use of modern communications technologies can be used to enhance the patient's quality of life and treatment.
• underdown 14y ago
  my sister is dying due to glioblastoma malforme and watching her "treatment" (cyberknife/avastin/invasive surgery) for the disease provided by top tier US medicine (barrows mainly) leaves me with the marked impression she would be better off seeking alternative therapies. I'm as skeptical a human being as you are likely to find on this planet and I am no champion of pseudo medicine - some ailments however may be treated more effectively via the placebo effect if nothing else. GBM with its ~95% mortality rate over a 2 year period is likely one of them. So while I agree with your overall sentiment there are plenty of edge cases where "medicine" is anything but.
  • robbiep 14y ago
    My heartfelt condolences. I had a cousin my age with GBM, and have been involved extensively with a Neurosurgeon in the surgical resection of GBM tumours. It is truly one of the worst conditions there are. The essence of what you are getting at, I think, is whether we should treat some cases at all. This is a problem I have considered many times watching my Surgeon interact with GBM patients. I think it comes down to 2 measures: Does the patient desire quantity of life, or quality of life? And what trade-offs would a patient be willing to accept in order to achieve quantity of life? Would it be okay for them to be a hemiplaegic? Paralysed? Unable to speak? Blind? For some patients this is okay as they may see their children reach some meaningful milestone, or be able to go and do that 1 thing they have always wanted to do. This is a horrible tradeoff that no medical practitioner can offer any advice on, it is a deeply personal choice. My thoughts go out to you and your family.
    • moultano 14y ago
      My dad died of it, and I'm not sure the treatment was worth it. He lived for a year instead of a few months, but surgery on your brain can change who you are. It changes your personality. He was unrecognizable for much of that year.
• noibl 14y ago
  > But Traditional Chinese Medicine and Homeopathic Oncology are not treatments; they operate under fraudulent principles - they are, at best, Lifestyle interventions The foundational principles of traditional medicine (Chinese, Ayurvedic, whatever) are generally bullshit. But that doesn't mean that everything that emerges from them should be ignored. If researchers have the resources and inclination to engage with specific claims and put them to the test, surprising discoveries can still result in this day and age.[1] Of course, that doesn't mean that discussion of any one patient's treatment should always be surrounded by a haze of quackery. But we shouldn't close the door completely. We should be careful to distinguish the fanciful principles of traditional therapies from their observed benefits over centuries and from the actually fraudulent nature of later pseudomedicine such as homeopathy. [1] http://www.washington.edu/news/2011/04/04/high-dose-of-oxygen-enhances-natural-cancer-treatment/ http://www.washington.edu/news/2011/04/04/high-dose-of-oxyge...
  • robbiep 14y ago
    I agree completely. Part of the problem remains however that so many treatments have been studied and proven wrong, however proponents of treatment by 'Insert CAM modality here' remain willfully blind to the evidence against their treatment, and still tell everyone that will listen that not only does it work, but modern medicine won't test it and the studies aren't done. as evidence I proffer the more than $1 Bn spent by the NCCAM for research into CAM that has largely come up bunk on the big issues. The research should be done, it is important to approach it with an open mind, but CAM proponents must live up to their end of the bargain and stop moving the goalposts whenever a study that debunks a modality is released. ps. I'm not too sure what your link has to do with the discussion exactly - I mean, artemisinin is not exactly part of the CAM stable anymore, it's a well accepted part of 'medicine proper' these days - joining a long list of other traditional therapies, asprin first and foremost amongst them, that have followed that route
    • ekianjo 14y ago
      I would be interested to know what you think of Western Medicine in the light of what Ben Goldacre says about how clinical trials are conducted. There are many flaws even in the so-called "Evidence-based" system in Western drug development, which is what you guys are going to rely on when providing treatments. "better than placebo" being enough to register a drug, cherry-picking patients in the results, targetting very niche patient groups, not publishing any of the failed studies but being able to register on a SINGLE successful trial (which could be pure luck, statistically speaking)... and the fact that nobody ever repeats the trials for confirmation. Traditional Chinese Medicine may be bullshit, but I think we have a heavy luggage of bullshit in modern Western Medicine as well and we ought to recognize it. Disclaimer: I have a long track record in pharma industries.
• hooande 14y ago
  Yes and no. Curing cancer is going to take more than "traditional chinese medicine and the many energies". But it's not written that it's going to require 4 years of college and 4 more years of medical school. You do still need experts, but there's no theoretical limit to the contribution from people without formal training. People can develop an incredibly deep level of knowledge about a narrow topic of interest to them (ie, life threatening illness). The internet is a thing now...people can can learn and share a remarkable amount of information. Even new purely academic research is made public after a few months. The idea of "open source cancer treatment" is a very promising one. This v. 0.1 may not be the best. But if this is like any other new idea or technology, in 5-10 years we could be seeing the most valuable product of crowdsourcing.
  • ekianjo 14y ago
    The idea of having medical "experts" is that they have credentials you can rely on. How can you tell if someone is a self-taught expert or a quack ? What kind of reputation system to build on this ? How do you deal with responsibility in case something very wrong occurs? I think it is an interesting direction, but I would rather be in favor of large-scale statistical models on all treatments taken by patients with similar profiles/conditions if all medical records could be made available (anonymously).
    • Alex3917 14y ago
      "How can you tell if someone is a self-taught expert or a quack?" You read the sources they're citing. Which is exactly the same way you evaluate whether or not a doctor knows what they're talking about. "What kind of reputation system to build on this ?" Does it really matter? Either their sources pan out or they don't. "How do you deal with responsibility in case something very wrong occurs?" The responsibility is all on you, the same as if you decide to do something a normal doctor recommends.
      • ekianjo 14y ago
        > The responsibility is all on you, the same as if you decide to do something a normal doctor recommends. I am not sure if you know, but Health Care Professionals do share some part of responsibilities. When a treatment goes wrong, if you can prove that their choice was made on shaky assumptions or doubtful logic, they can legally be sued and asked for reparations. > You read the sources they're citing. For sure you have never looked at the clinical trial sources to reply in such a simple way. Have you ever read a clinical trial report? There is no way of telling that the results were not rigged, that it was not pure luck (as failed studies are generally not published) and that the results are applicable to your case. It may be easy to do in other fields, but in medicine there is no such thing as full data transparency.
• wissler 14y ago
  Heaven forbid that someone retain some individual control over their own medical choices. On the contrary, we need High Priests of Medicine to lord over us, to dictate to us what treatments we may and may not have access to.
• genuine 14y ago
  > Anyone with a half rational brain should be alarmed by this statement. > It is not that lifestyle changes are bad; they are good - they help a patient adapt to their new situation. But Traditional Chinese Medicine and Homeopathic Oncology are not treatments; they operate under fraudulent principles - they are, at best, Lifestyle interventions that claim to operate by exerting theraputic effects. The placebo effect is huge, my friend, and AMA-approved medicine is not exempt from it. You do realize that the last four gruelling years of your life, and those years ahead, will make you believe that you can cure people right? And that belief is also held by most patients. So, even if you screw up or in fact have no idea what you are really doing, you get the benefit of the placebo effect in almost every patient that believes that you will cure them. You are as much a witch doctor as the holistic practitioners. It is likely that in 100 years, doctors will say that the medicine that you are practicing now was incredibly misinformed- no, not because you didn't believe in "some kooks", but because of everything that is continuously just wrong because we don't have all of the answers. BTW- are you really a med school student? You misspelled therapeutic.