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Medicine Open Source News

Finding a Crowdsourced Cure For Brain Cancer 217

Posted by samzenpus
from the fighting-the-good-fight dept.
Hugh Pickens writes "Salvatore Iaconesi, a software engineer at La Sapienza University of Rome, writes that when he was recently diagnosed with brain cancer, his first idea was to seek other opinions. He immediately asked for his clinical records in digital format, converted the data into spreadsheets, databases, and metadata files, and published them on the web site called The Cure. 'The responses have been incredible. More than 200,000 people have visited the site and many have provided videos, poems, medical opinions, suggestions of alternative cures or lifestyles, personal stories of success or, sadly, failures — and simply the statement, "I am here." Among them were more than 90 doctors and researchers who offered information and support.' The geneticist and TED fellow Jimmy Lin has offered to sequence the genome of Iaconesi's tumor after surgery, and within one day Iaconesi heard from two different doctors who recommended similar kinds of 'awake surgery,' where the brain is monitored in real time as different parts are touched. A brain map is produced and used during a second surgery. 'We are creating a cure by uniting the contributions of surgeons, homeopaths, oncologists, Chinese doctors, nutritionists and spiritual healers. The active participation of everyone involved — both experts and ex-patients — is naturally filtering out any damaging suggestion which might be proposed,' writes Iaconesi. 'Send us videos, poems, images, audio or text that you see as relevant to a scenario in which art and creativity can help form a complete and ongoing cure. Or tell us, "I am here!" — alive and connected, ready to support a fellow human being.'"
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Finding a Crowdsourced Cure For Brain Cancer

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  • by LurkerXXX (667952) on Monday November 26, 2012 @10:58AM (#42093777)

    I'm sorry to hear about your dad, but please don't put uninformed stuff like this out there. Cancer isn't one disease, it's many. And some do have high survival rates. The others we are working on.

    http://www.cancerresearchuk.org/cancer-info/cancerstats/survival/latestrates/survival-statistics-for-the-most-common-cancers [cancerresearchuk.org]

  • Re:Misguided (Score:4, Informative)

    by BKX (5066) on Monday November 26, 2012 @11:18AM (#42093969) Journal

    First, he was 100% correct about cancer. Second, even if he doesn't know how homeopathy works, I do, and it doesn't. This is how homeopathic "medicines" (no, they aren't medicine; I'm not even willing to just put medicine in scare quotes and leave it at that. It must be said explicitly, homeopathy is not medicine; it is water.) are made:

    1: Put random shit in bottle. Set counter C to 0.
    2: Dilute 100:1 with water.
    3: Shake solution up and down ten times.
    4: Shake solution side to side ten times.
    5: Shake solution back to front ten times.
    6: Tap bottle of solution on a Bible (King James preferred for some reason) ten times.
    7: Increase C by 1.
    8. GOTO step 2 until C is 30 (or whatever number you prefer).

    The interesting thing here is that by 13C or so, there's no way that there's any of the original substance left unless you poured some 1C in the ocean and smacked it up a few times with a Bible. At 14C, you're lucky if you got a single molecule. Beyond there it's just gone. So unless Jesus comes down from Heaven to make water into medicine every time you shake a bottle and beat a Bible with it, homeopathy is nothing. See this website for more details: http://www.howdoeshomeopathywork.com/ [howdoeshom...hywork.com]

  • Re:Misguided (Score:4, Informative)

    by Anonymous Coward on Monday November 26, 2012 @11:34AM (#42094107)

    Homeopathic remedies have been the subject of numerous clinical trials, which test the possibility that they may be effective through some mechanism unknown to science. Taken together, these trials showed no effect beyond placebo. Although some trials produced positive results, systematic reviews revealed that this was because of chance, flawed research methods, and reporting bias. The proposed mechanisms for homeopathy are precluded by the laws of physics from having any effect. Patients who choose to use homeopathy rather than evidence based medicine risk missing timely diagnosis and effective treatment of serious conditions. The regulation and prevalence of homeopathy vary greatly from country to country.

    Sounds like he's got it about right, considering there's never been any evidence for homeopathy working that's stronger than the placebo effect. Maybe YOU could explain for us how homeopathy works, since you seem to think you know, and nobody else has been able to verify it working, much less *explain* its workings.

    We're not talking "chew willow bark to relieve a headache" type of "alternative medicine" - willow bark is simply a natural source for a well-studied and well-characterized chemical - acetylsalicylic acid, or aspirin. We're talking about "soak a piece of willow bark in a bit of water or alcohol, and continue diluting until no trace of any salicylate from the willow bark can be detected in the water or alcohol, and then expect it to have an even more potent effect than the willow bark itself."

    That's the shit that is completely bogus, and completely without merit, except as a placebo.

  • Re:Misguided (Score:4, Informative)

    by bhartman34 (886109) on Monday November 26, 2012 @12:33PM (#42094675)
    Actually, I do know how it works. That's why I was charitable enough to say "marginally useful ingredient", rather than "random shit", as one of the more blunt posters said below.

    Do yourself a favor and look at the studies. Not just the favorable ones, but all the studies, including the meta analysis of multiple studies. PubMed is a good start.

    The reason I know this is because I've been pulling information on studies from databases for almost 14 years now as part of my job. I know how to look this stuff up and weigh the evidence. I also know a thing or two about routes of administration and mechanisms of action. When you don't have a single molecule of the active ingredient left, there's no viable mechanism of action, and no administration whatsoever.

    Oh, and in regards to flight: When the Wright Brothers flew, they didn't chalk it up to magic. They understood the basics of what was keeping them aloft, even if they didn't yet understand aerodynamics the way we do today. Homeopathy rejects basic physical principles we know today, in favor of faulty reasoning. It's not quite at the level of alchemy or astrology on the Bullshit Meter, since there are at least some observations (albeit incorrectly interpretted) behind it, but it's pretty close.
  • Re:Misguided (Score:5, Informative)

    by ceoyoyo (59147) on Monday November 26, 2012 @01:43PM (#42095513)

    "First of all lots of chinese medicine is: standardized, purified and most of all validated."

    No, it's not. The first thing you learn when you look into Chinese medicine is that everything is done a little bit differently by each practitioner. When an actual clinical trial of some technique or concoction fails to show an effect the first criticism from believers is usually "oh, you didn't do it right. You have to do it the way THIS school/practice/group/individual does it!" If you do a clinical trial of Advil, Adex, Actron, Anadin or any of the other Ibuprofen brands, you get the same results, because each of them is exactly the same thing.

    Regarding Homeopathy, if it would rely on the placebo effect only a small number of patients would be "cured"

    No. The placebo effect is quite strong. It can be measured and quantified, although it does depend on the circumstances and the effect in an individual depends very much on that individual's psychology and how they view the treatment they're getting. Modern clinical trials peg the placebo effect at around 30%. Homeopathic remedies HAVE been run through randomized clinical trials and they do not perform better than a placebo.

    I don't think you know what homeopathy is. Homeopathy specifically involves diluting substances (ranging from herbal extracts to things like arsenic) until there it is very unlikely there is even a single molecule of the active substance remaining. That is, homeopathic remedies are water. The "theory" underlying homeopathy is that water molecules have a memory of other molecules they've been near and somehow this memory effect turns the water itself into an active drug.

    The camomile example you give sounds like an herbal remedy. Many people confuse the two. Many "homeopathic" practitioners probably hope people confuse the two since herbal remedies have a LOT better chance of actually working (i.e. greater than zero). Herbs do indeed contain active ingredients that could potentially be purified, standardized, and validated. However, studies to date (and the US government has invested billions in doing these studies) have resulted in finding one traditional herbal remedy (that hasn't already been turned into a drug) that performed better than placebo: ginger for nausea. Other plant extracts are already used extensively. Aspirin (from willow bark) is the standard example. Currently drug companies are "mining" tropical rain forests looking for drugs.

    I'm afraid you don't know what you're talking about, regarding homeopathy or anything else you've mentioned. Please stop trying to educate other people. And no, I'm not being harsh. People like you and the quacks that practice homeopathy are screwing around with people's lives. I have one friend who lost her mother because by the time they realized the alternative "medicines" weren't working it was too late. I remember the day she asked me if I could recommend a good oncologist.

"A mind is a terrible thing to have leaking out your ears." -- The League of Sadistic Telepaths

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