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Finding a Crowdsourced Cure For Brain Cancer

samzenpus posted about a year ago | from the fighting-the-good-fight dept.

Medicine 217

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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217 comments

doesn't this rely rather strongly on the novelty? (4, Insightful)

Trepidity (597) | about a year ago | (#42093079)

There were a ton of people interested in his case, but imo that was strongly dependent on the novelty and the fact that it's uncommon so far. Why did these geneticists and researchers spend a bunch of unpaid time on his case in particular? Because it was one of the few (only?) available in this form. But every year there are about 13 million people diagnosed with cancer. What if even 1% of them were uploaded online? Would there be folks like Jimmy Lin looking through all 130,000 of those cases on a volunteer basis? My guess would be no: once it gets to be a few hundred or thousand people trying the same thing, and then it just goes back to being normal medicine again, of the kind where you need doctors who're doing it as a full-time job to go through all the cases.

Re:doesn't this rely rather strongly on the novelt (5, Insightful)

Half-pint HAL (718102) | about a year ago | (#42093231)

It's in part novelty, it's in part the cult of the individual. We've seen the internet pay for doctors bills, legal fees, new houses, breast implants etc for individuals, to the detriment of bigger charities that are far more efficient (and often more deserving) because people like an individual person with an individual story -- it's more personal. A genuine "cause" is far more abstract.

Re:doesn't this rely rather strongly on the novelt (0)

Anonymous Coward | about a year ago | (#42094055)

"to the detriment of bigger charities that are far more efficient"

Support universal health care. Experience shows it's a much better option than giving to charity.

Re:doesn't this rely rather strongly on the novelt (1)

fuzzyfuzzyfungus (1223518) | about a year ago | (#42093401)

It also sounds like Sturgeon's law is having a field day among some of the contributors...

Re:doesn't this rely rather strongly on the novelt (-1)

Anonymous Coward | about a year ago | (#42093607)

It also sounds like someone is beating a meme to death and trying to convince the rest of us that a "law" that really isn't a law makes any amount of difference in the real world.
 
It also sounds like the same asshat is trying to go out of their way to miss the bigger point.
 
It also also sounds like the same asshat throws as many posts at Slashdot as what they can in a day to make themselves feel good about how pathetic they are.
 
Wouldn't you say?

Re:doesn't this rely rather strongly on the novelt (1)

bfandreas (603438) | about a year ago | (#42093591)

Getting a second opinion is far from novel. People do it all the time. The novelty is the scale in which he takes that second opinion thing.

Will it help him?
No, it won't. In fact it will get in the way.
The problem is that he will get a lot of opinions with a lot of different treatments which will be mutually exclusive. Also he will get a lot of BS suggestions ranging from homeopathy, feng shui to praying. Quod capita tot census.

The only surefire cure -in fact the only medical discipline that REALLY is able to cure by itsself- is surgery. If it isn't applicable then you will be limited to the unpleasant other alternatives. Or praying. Or homeopathy. Or feng shui.

I really do sympathise with him. He is understandably grasping for straws and hopes there is somebody out there who can help him and he hopes his fishing expedition will actually find that person. But even if there were a silver bullet it is very unlikely he will be able to identify it.

Re:doesn't this rely rather strongly on the novelt (2)

BKX (5066) | about a year ago | (#42093817)

Not to be all grammar Nazi (prepare for incoming grammar and spelling mistakes), but I think you meant "QUOT CAPITA TOT SENSUS". When I looked at your version, it made no sense (That head many counts.). Then I thought about it. "One head, many opinions"

Still he reached more famous surgeons/doctors (1)

Herve5 (879674) | about a year ago | (#42094289)

I agree with 99% of the above post, and also with the fact it's novelty alone that makes it standout (and that universal healthcare is better than spending the same amount on a single person however pathetic his story).

Still, outside becoming famous Iaconesi got something he would never have reached without his initiative : he raised the attention of various, famous physicians.

Basically, he's about to obtain a cure "à la Steve Jobs" without the money.

Which is wise.

For a single person.

Re:doesn't this rely rather strongly on the novelt (4, Interesting)

fuzzybunny (112938) | about a year ago | (#42093983)

But think about it this way - a big part of the reason for sharing such information and making it commonly accessible is to enable the automation of pattern-finding.

This is tough to do with patient records scattered through fifty thousand different hospital databases. With those 130,000 cases online, you're going to start seeing commonalities in various reactions to treatments, statistics, etc. which in turn will make it much easier for researchers to begin understanding what combinations of cures/treatments may or may not work - leaving the "weird" ones that don't fit into any patterns to the Jimmy Lins.

Re:doesn't this rely rather strongly on the novelt (1)

Trepidity (597) | about a year ago | (#42094081)

That's true, and an interesting angle. Some of that does happen already: at university-affiliated research hospitals in particular, there is a trend towards digitizing this information and making it available to researchers (under various confidentiality agreements, and with Institutional Research Board approval), who do things like mine it for patterns. I know some people at U. Washington in St. Louis doing that kind of thing. But it's a good point that it might become more widespread if there were an open corpus to work from; right now access to the records is governed by HIPAA, which puts various restrictions on it. On the other hand, the corpus they use at WashU is possibly less biased, because it includes all patients' records, rather than only those who have chosen to opt-in by putting theirs online.

Support =/= Cure (5, Insightful)

Anonymous Coward | about a year ago | (#42093087)

"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."

Cancer does not work that way.

Actually it does work that way... (1)

Anonymous Coward | about a year ago | (#42093289)

With more eyes on a problem one can find a solution, in this case a cure, far faster than one would ordinarily. And also the people involved actually want to cure the disease as opposed to the standard situation which is where you have a handful of bored oncologists "study" a particular cancer for years in their isolated area of expertise who don't really want to lose job security by curing anything.

Re:Actually it does work that way... (0)

Anonymous Coward | about a year ago | (#42093609)

There's also the problem which I've seen in many "open" projects; in many cases you do not have the time or the expertise to find out if a person is a complete baboon or a genious in his specialist area. When the skills are not there, enthusiasm only makes things worse.

Re:Actually it does work that way... (3, Insightful)

Samantha Wright (1324923) | about a year ago | (#42093989)

Medical professionals do not place their job security above the well-being of their patients; those who do get destroyed for malpractice. I hear this claim getting repeated about pharmacologists a lot here on Slashdot—that they don't want to cure diseases because palliative care is a better cash cow—and it just reflects immensely on how ignorant people become when they reduce everything to money.

Doctors are primarily concerned with helping people. With few, anomalous exceptions, they want to eliminate disease and make the world a better place. There are plenty of ways to get a secure job that don't involve making a lifelong commitment to interacting with sick people (and for surgeons, the insides of sick people) on a regular if not daily basis. They also don't cost several extra years, nor the tens if not hundreds of thousands of dollars involved in tuition. You've clearly gotten them confused with IT managers.

Furthermore, the few doctors who don't consider patient welfare to be their major drive are preoccupied with personal glory, which they already obtain through saving lives. Nothing could be better for them than saving lives even after they're dead. Curing a disease and inventing something that improves the quality or process of medical care both accomplish this.

Re:Support =/= Cure (-1)

Anonymous Coward | about a year ago | (#42093307)

Wrong. Mental health is an important component of recovering from any condition which creates physical weakness. It's just not sufficient on its own.

Of course the guy sounds like an attention-seeking cunt who has managed to seduce the attention of dullards away from more efficient methods of research and assistance. The Internet's turning into one big Eva Peron Foundation.

Re:Support =/= Cure (0, Offtopic)

fuzzyfuzzyfungus (1223518) | about a year ago | (#42093435)

"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."

Cancer does not work that way.

While it isn't really 'creativity' in a cognitive sense, there is a strong case to be made that the incredible pace and breadth of adaptation among cancer cells(which quickly leads to all sorts of neat tricks like chemo resistance, the ability to burrow through barrier tissues, immortality, and the capacity to stimulate the diversion of nutrients and oxygen for their own use) is a demonstration of how creativity spits in the face of a complete and ongoing cure, steals its lunch money, and then curb stomps it...

Thank fuck! (5, Funny)

gazbo (517111) | about a year ago | (#42093107)

Now we've got homeopaths and spiritualists involved, a cure for cancer must surely be just around the corner!!

Re:Thank fuck! (1)

Anonymous Coward | about a year ago | (#42093167)

Now we've got homeopaths and spiritualists involved, a cure for cancer must surely be just around the corner!!

That's what my fortuneteller's astrologer told her she read in a fortune cookie.

Re:Thank fuck! (4, Funny)

Half-pint HAL (718102) | about a year ago | (#42093197)

Yes, and because the spiritualists have been diluted 1000 times by the number of homeopaths and other practitioners on the site, their advice is made even more effective!

Re:Thank fuck! (1)

Anonymous Coward | about a year ago | (#42093299)

Yeah, on any particular subject they're about as "expert" as . . . Slashdotters.

Re:Thank fuck! (0)

Anonymous Coward | about a year ago | (#42093359)

They are there as a last resort. So when you take advice from a priest, you just know you're fucked.

Define "brain cancer" (0)

Anonymous Coward | about a year ago | (#42093123)

Which xxxplasm.xxxxlipoma are we targeting?

Re:Define "brain cancer" (1)

durrr (1316311) | about a year ago | (#42093409)

It's a neoplasm for sure and given that it's a cancer(malignant) it's sure as hell not a lipoma(benign).

If you read the text of the first link it's a "low-grade glioma"(which despite the -oma ending is still a malignant tumor(which would generally have a -sarcoma or -carcinoma ending))

Misguided (5, Insightful)

Captain_Chaos (103843) | about a year ago | (#42093125)

'We are creating a cure by uniting the contributions of surgeons, homeopaths, oncologists, Chinese doctors, nutritionists and spiritual healers.'

This is incredibly misguided, and that is the most charitable way of putting it. Other things you could call it are bloody stupid, daft and irresponsible. There is no way in hell you're going to be able to separate the wheat from the chaff with such a volume of random input, most of it crap, and come up with any useful ideas, let a lone a "cure". Especially not if you're apparently going to accept most of the crap. Homeopaths? Chinese doctors? Spiritual healers? "Uniting their contributions" is going to drag the net worth of the resulting mess down to below zero...

Re:Misguided (1)

eastlight_jim (1070084) | about a year ago | (#42093135)

It does sound like a badly done odd-one-out list, doesn't it?

"For 10 points, which of these are people who may actually be able to cure your cancer? Surgeons, homeopaths, oncologists, Chinese doctors, nutritionists and spiritual healers."

Re:Misguided (1)

fustakrakich (1673220) | about a year ago | (#42093169)

You know, when you're sick, you can feel mighty lonely. Maybe he just wants to read something directed to him. Even if he doesn't doesn't get better, the quality of his remaining time might still be a little bit better for it. IOW, don't harsh his high for whatever that's worth. Dig?

Re:Misguided (1)

ericloewe (2129490) | about a year ago | (#42093293)

Whatever the reason, anything that implies that "homeopaths, Chinese doctors, nutritionists and spiritual healers" do anything that comes close to curing cancer should never, ever be written.
Such crap only gets in the way of real medicine and gives false hope. It also serves to line con artists' pockets with cash from gullible people.

Re:Misguided (-1, Flamebait)

Jmc23 (2353706) | about a year ago | (#42093363)

Which con artists and gullible people are we talking about? The huge pharmaceuticals and the legions of sheep that take their drugs?

Grow up all ready. Learn how science works, then learn about medical 'science'.

Re:Misguided (3, Insightful)

Nerdfest (867930) | about a year ago | (#42093477)

When it comes to what works, the only thing I really trust is double-blind studies.

Re:Misguided (1)

angel'o'sphere (80593) | about a year ago | (#42093705)

My famous double blind study is that one about parachutes.

30 volunteers are in a plane to test the new parachute.

The scientist has numbered all parachutes from 1 to 30, and he is the only one who knows which numbers are the new ones, and wich are the placebo.

Neither the volunteers (singel blind), nor the guy at the exit door, handing out the parachutes (double blind) knows who will get a new parachute and who will get the placebo.

The scientist counts the corpses afterwards, not surprisingly all the volunteers taking the placebo parachute are dead, sigh.

Re:Misguided (0)

Anonymous Coward | about a year ago | (#42093807)

all the volunteers taking the placebo parachute are dead, sigh.

That was expected to begin with. The interesting question is, what happened to the people using the new parachute?

Re:Misguided (1)

ceoyoyo (59147) | about a year ago | (#42093859)

And you successfully demonstrated that jumping out of a plane with a working parachute does indeed improve your chances of survival.

What was the point of that silly post anyway?

Re:Misguided (1)

angel'o'sphere (80593) | about a year ago | (#42094061)

The point was simple: the experiment would run the exact same way regardless wether it was conducted as a blind, double blind or not blind at all experiment.

People here on /. shout "double blind study" and "law of thermodynamics" quite to often.

Re:Misguided (1)

fatphil (181876) | about a year ago | (#42094439)

Bollocks. At least in the "not blind at all" part.

The people participating could have been warned by the local witch that by deploying the new parachutes not only would they die, but their wives, children, and children's children for seven generations would also die horrible deaths. As they were superstitious folk (why else would they be consulting witches?) everyone given the new parachute died in a simple splat rather than cursing their kin.

Never expect the parties being tested to not interfere with the experiment.

Re:Misguided (3, Insightful)

bhartman34 (886109) | about a year ago | (#42093493)

Please don't tell me you're one of those "drug companies want people to have cancer" idiots.

Read the following slowly, so that you'll understand it completely:

Cancer isn't one thing. It's many things, under one umbrella term.

Colon cancer isn't the same as lung cancer or skin cancer. There's no such thing as a "cure for cancer", and there never will be. There are treatments that can cure cancer for individual patients when it rears its ugly head, but there's no such thing as, "Wow! Look at this drug! No more cancer for anyone, ever!!".

A 100% effective treatment for a specific cancer would be a multi-billion dollar a year drug, and would earn that revenue for years to come. (Yes, patents expire, but there are different routes of administration and different formulations to patent.)

On the other side of the ledger, you have homeopathic "cures", that do absolutely nothing but drain people's wallets. Homeopathic drugs are nothing but really expensive water -- by design. You dilute some marginally useful ingredient many, many, many times over, and then sell people on magical bullshit.

Re:Misguided (0)

angel'o'sphere (80593) | about a year ago | (#42093725)

You obviously don't know how homeopathy works. Perhaps read up an article or a book about it?

However you are semi right about the variety of cancer. Even brain cancer is not "just one cancer", but dozens if not hundreds different kinds.

Re:Misguided (1)

Bob the Super Hamste (1152367) | about a year ago | (#42093873)

I do, it is called the placebo effect [wikipedia.org] which is why sugar pills seem to cause and cure every disease under the sun.

Re:Misguided (1)

angel'o'sphere (80593) | about a year ago | (#42093955)

Obviously you don't, but believe you do.
Does not really matter for me, it is just surprising how many people have opinions without ever having read anything about the topic they have the opinion about ;D

Re:Misguided (4, Informative)

Anonymous Coward | about a year ago | (#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 (1)

Bob the Super Hamste (1152367) | about a year ago | (#42094341)

Well considering that in homeopathy the more dilute a substance is the strong the medicine is but it has to be diluted in the proper way, i.e. magic shake to imbue the essence of the medicine into the inert substance (inert substance is typically sugar, ethanol, distilled water, or saline solution). I might actually believe that there would be effects at x1 to x10 (parts per 10 down to parts per billion) I have a real hard time believing that the most potent homeopathic cures (x200 or anything beyond about x23 for that matter) provide anything other than an easy way to separate a gullible consumer from their money and dose of sugar, ethanol, distilled water, or salt water. My wife who as bad allergies tried a homeopathic nasal flush (lots of stuff at x20, x50 x100 and a couple of things at x200) and it worked but the inert ingredient was salt and you just mixed with warm water, interestingly warm salt water works just as well for a nasal flush and for the price she paid for a few doses of the homeopathic crap I could have bought several pounds of salt and gotten the same results. So please enlighten us on how the magic shaking imbues the inert substance with the essence of the cure because it sure sounds like homeopathy is just as much a work of fiction as the device that creates food from textured water molecules from the movie " Cloudy with a Chance of Meatballs [wikipedia.org] "

Re:Misguided (1)

angel'o'sphere (80593) | about a year ago | (#42094561)

This: Well considering that in homeopathy the more dilute a substance is the strong the medicine is but it has to be diluted in the proper way is obviously wrong. But a common repeated myth.
The rest of your post makes sense, hint: a therapy usually starts with an X1 solution.

My wife who as bad allergies tried a homeopathic nasal flush (lots of stuff at x20, x50 x100 and a couple of things at x200) and it worked but the inert ingredient was salt and you just mixed with warm water, interestingly warm salt water works just as well for a nasal
Thats why a good doctor, regardless what disciplin, just suggest nasal flushes with slightly salted water.
However this treatment comes from a similarly disrespected old healing school. Perhaps for your wife it was better to get that treatment under the cover of Homeopathy instead of Ayurveda.

No, I dont enlighten you ;D they way it is supposed to work is super simple and has nothing to do with shaking or diluting. Perhaps I should read the english/american wikipedia article about it, would not wonder if that principle is not even mentioned there.

Bottom line it makes a lot of sense to learn about simple body principles, so medicals don't have it so easy to "trick" you. After all using salted water as nasal flush is thousands of year old but I guess 95% of the americans never heard about it (well, surely 90% of the germans neither). I mean, I have a stomach problem. Classical medicals gave me the classical treatment, which does ofc. not work. And does not work at anyone I know who has a similar problem. I mean: why did that "specialist" give me a treatment which after reading a few articles about it where obviously imposible to work? Simple: it is the standard procedure. He first subscribes this one. After 3 months of: "wow, sorry, id did not work?" he would procede to the next one ...
Ofc a random homeopath would not be able to help me either. So I cure my self by changing my eating habits. A huge deal of modern illnesses can be dealt with or even cured by changing your habits in life. So getting an idea how your body works is the first thing to do imho.

Ah, the article on wikipedia is strongly biased against homeopathy, but is bottom line a good summary.

Re:Misguided (3, Informative)

BKX (5066) | about a year ago | (#42093969)

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 (0)

angel'o'sphere (80593) | about a year ago | (#42094119)

Obviously you don't know how it works.

First mistake: "random shit".

Second mistake: you explained (rather harsh) how a medical is made. You don't explain the principle of its application and the idea/science behind it.

For a start I would say figure this: your patient has a random fever. Random means in this case: no one can figure what it actually is, that includes a "traditional" doctor (no obvious infection, no poison).

Now it is your challenge to find the correct "random shit". You do not need to know the chemical formular, a simple sentence like "I need a thing that does X" is enough ... tell me the X ;D

And after you have found the X, tell me how you create the medical and how you plan the therapy. And no, no need to trust that it works, I only challenge you to show that you really know how homeopathy is supposed to be applied.

And frankly, you can explain in 3 sentences how it is supposed to work, for you as a newcomer I grant you 10.

Re:Misguided (2)

Americano (920576) | about a year ago | (#42094273)

I'll take a stab at correcting his procedure:

1: Put some shit dictated by your repertory or materia medica in a bottle. Set counter C to 0.
2: Dilute 100:1 with water.
3: Succuss bottle on some elastic surface to help that "water memory" to develop.
4: Increase C by 1.
5: GOTO step 2 until C is 30 (or whatever number you prefer.)

At the end of this procedure, you will still likely be unable to detect even a single molecule of "active ingredient" in the water, and you will still be left with a very expensive sugar pill. Homeopathy is grade A snake oil bullshit, friend. I'm sorry, but the ONLY benefit you get from it is the placebo effect - and you don't need expensive water to get that effect - belief is all that's required, and that comes free if you're credulous enough.

Even IF the medicines prescribed by the repertories were useful, homeopathy's dilution principles guarantees that no biologically significant amount of active ingredients will ever enter your system. Unless you have some actual science to show that this is more than a placebo effect, it's an argument you're going to lose.

Re:Misguided (1)

angel'o'sphere (80593) | about a year ago | (#42094415)

You did not correct his procedure.
You repeated it ... except for the "random shit" ;D now it is still shit, lol.

Just as a side question, if you have a C1 "solution", is that used as a medicine or only the C10 or C30 solution?

The next thing is, you believe the diluted stuff is a "medical" as in "it cures" ... however it is not.

Fact is, people who only know what you just have posted, or our parent, don't know anything about homeopathy.

You know, at the time where flight was invented. No one knew how it works either. But suddenly they managed to build planes, and AFTER wards they understood the principles of the profile of a wing. In our days I guess pupils in school think a plane flies because it has an engine ...

Re:Misguided (0)

Anonymous Coward | about a year ago | (#42094085)

You obviously don't know how homeopathy works.

It doesn't. That is all.

Re:Misguided (3, Informative)

bhartman34 (886109) | about a year ago | (#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 (1)

Anonymous Coward | about a year ago | (#42094133)

On the other side of the ledger, you have homeopathic "cures", that do absolutely nothing but drain people's wallets. Homeopathic drugs are nothing but really expensive water -- by design. You dilute some marginally useful ingredient many, many, many times over, and then sell people on magical bullshit.

Actually sometimes they dilute a harmful substance so much that it is no longer harmful because no molecules of the harmful substance are left. The thinking seems based on drawing a graph where the harmfulness decreases with dilution, so surely, with enough dilution there must be a benefit. It doesn't make a lot of sense.

Re:Misguided (1)

gr8_phk (621180) | about a year ago | (#42094635)

A 100% effective treatment for a specific cancer would be a multi-billion dollar a year drug, and would earn that revenue for years to come.

Unless that treatment were to be a simple virus [redorbit.com] either injected into a tumor or an IV drip [dailymail.co.uk]. Then there wouldn't be much money for that treatment now would there? As you google the rio virus and other possible virus treatments for cancer you should notice a trend. All the companies that are doing clinical trials have tried to *modify* the virus in some way in order to make in "novel" so they can patent it. The goal is NOT to find a cure for any type of cancer - it is to find a "novel" cure that can be patented.

Recently I read another article about a researcher who had a potential cure in his lab, but since he had already published his work it was no longer patentable, so they needed to find a way to make it novel before any serious funding (needed for more research and then clinical trials) could be had. He claimed he was not unique, there are many researchers that have something that works in certain conditions (rats, specific scenarios, etc) but it's hard enough to figure out who to fund without the problems of making sure the result is proprietary.

It's not clear to me what the solution to this is other than funding the researchers who are actually doing worthwhile research instead of trying to figure out a way to modify existing drugs in order to get another 20 years of patent protection on a new variant.

Re:Misguided (1)

angel'o'sphere (80593) | about a year ago | (#42093677)

Big parts of Chinese medicine is real medicine. Same for homeopathy.

Re:Misguided (1)

ceoyoyo (59147) | about a year ago | (#42093871)

There are bits of Chinese medicine that might potentially be real, if they could be standardized, purified and most of all validated. Homeopathy on the other hand, relies purely on the placebo effect. You don't need expensive water for that.

Re:Misguided (1)

angel'o'sphere (80593) | about a year ago | (#42094045)

You are a bit harsh.

First of all lots of chinese medicine is: standardized, purified and most of all validated. It is just so that western medicine does not trust a medical study that was done 450 BC on 3000 war prisoners.

Regarding Homeopathy, if it would rely on the placebo effect only a small number of patients would be "cured". I suggest to read something about history of homeopathy and modern homeopathy. E.g. a typical homeopathy medical is "Extract from Camomile", it is neither diluted nor treated special except for the time where it is harvested. And there is no sane modern doctor who doubt it works wonderful for disinfecting wounds, stomach or intestine problems or a common cold. There are hundreds of herbs used in homeopathy that are used exactly in the same way as in "traditional" medicine. In fact you only need to go to a drugstore and pick up random medials and just read the ingredients (and take a list of homeopathic medicals and compare them), you will be surprised.

Regarding the work with "diluted" stuff, I strongly recommend to read about the "science" behind it. As I'm fed up with educating /.ers with simple stuff that they should have learned in school.

Re:Misguided (1)

Anonymous Coward | about a year ago | (#42094481)

it is neither diluted nor treated special except for the time where it is harvested.

I see the problem - YOU don't know what homeopathy is, and seem to want to insist that it's just "natural herbal medicine." There's a difference between herbal medicine and homeopathy - you should study up before you recommend one, then turn around and destroy any credibility you might have by championing non-scientific non-cures based on voodoo and mysticism.

Re:Misguided (1)

mellyra (2676159) | about a year ago | (#42094611)

There are bits of Chinese medicine that might potentially be real, if they could be standardized, purified and most of all validated. Homeopathy on the other hand, relies purely on the placebo effect. You don't need expensive water for that.

inexpensive water would not be a credible placebo - everybody knows that medicine is expensive.

Re:Misguided (0)

Anonymous Coward | about a year ago | (#42094291)

Big parts of Chinese medicine is real medicine..

Possibly - "Chinese medicine" is a fairly broad term, and there is probably
some of it that is actual medicine (Although large parts are not)

 

Same for homeopathy.

Absolutely 100% incorrect. No facet of homeopathy is medicine or science or true.

Re:Misguided (1)

lobiusmoop (305328) | about a year ago | (#42093189)

Cut the guy some slack, he's just been diagnosed with cancer, quite frankly he's going to be scared shitless and clutching at every straw he can get his hands on. I'm not condoning his approach but I can certainly understand it. Really though he needs to grit his teeth and just get on with the treatment ASAP, It's not the dark ages.

Re:Misguided (2)

SecurityGuy (217807) | about a year ago | (#42093531)

Oh, I don't mind the guy doing this one bit. I mind web sites with a huge audience (slashdot and CNN) publishing this as anything but one desperate man's cry for help. I read this first on CNN, which described it as an open source "cure" for cancer. As if the one thing that's been missing in all the thousands of trials and billions of dollars spent trying to cure cancer was one man's complete medical record.

Re:Misguided (1)

openfrog (897716) | about a year ago | (#42093333)

This is incredibly misguided, and that is the most charitable way of putting it.

There is no way in hell you're going to be able to separate the wheat from the chaff with such a volume of random input

Oh really? So from your own point of view, there is no way in hell such a thing as Slashdot can work, all those random comments from idiots who can't even RTFA! Not mentioning such a ludicrous idea as an open encyclopedia where every other ignorant can edit an article.

Yes, a lot of suggestions are going to come from homeopathy and spiritual healers. And you know, then, maybe these people will learn more in the process than if they were being outlawed and chased by lawyers.

Iaconesi mentions the word 'harmony' in reference to the whole process, where you just see a mess. You know, life itself can be seen as just a mess. Yet...

Re:Misguided (2)

Captain_Chaos (103843) | about a year ago | (#42093373)

So from your own point of view, there is no way in hell such a thing as Slashdot can work, all those random comments from idiots who can't even RTFA!

Announcing that you are going to accept the contributions of homeopaths, etc. is like saying you're going to read Slashdot at -1 or accept every edit on Wikipedia.

Yes, a lot of suggestions are going to come from homeopathy and spiritual healers. And you know, then, maybe these people will learn more in the process than if they were being outlawed and chased by lawyers.

Hardly. Most of these people want to believe. No amount of rational argument is going to sway them. As they say: you can't reason somebody out of a position they didn't reason themselves into. Either that, or they are con artists.

Re:Misguided (0)

openfrog (897716) | about a year ago | (#42093439)

Announcing that you are going to accept the contributions of homeopaths, etc. is like saying you're going to read Slashdot at -1 or accept every edit on Wikipedia.

Hardly. Most of these people want to believe. No amount of rational argument is going to sway them. As they say: you can't reason somebody out of a position they didn't reason themselves into. Either that, or they are con artists.

Captain_Chaos hey? I see that you were not even able to resist the urge to broadcast in your nickname your motivation to post here.

Re:Misguided (0)

Anonymous Coward | about a year ago | (#42093657)

As they say: you can't reason somebody out of a position they didn't reason themselves into. Either that, or they are con artists.
 
So your concepts of the world have never changed? Or are you somehow unique and open minded where everyone else is just a drone?

Re:Misguided (0)

Anonymous Coward | about a year ago | (#42093611)

So from your own point of view, there is no way in hell such a thing as Slashdot can work, all those random comments from idiots who can't even RTFA!

It would be the equivalent of somebody claiming that Slashdot was going to cure cancer, just by having a forum for debate where any ill-informed, clueless lackwit could contribute whatever he wished, even if it was completely irrelevant or actively harmful to the goal of curing cancer.

In other words, it'll work just about as well as Slashdot does at curing cancer. Except on this site, we don't pretend we're curing cancer.

Re:Misguided (0)

Anonymous Coward | about a year ago | (#42093583)

Don't forget the 4chan contribution:

"You have cancer? HAHAHAHAHAHAH! AN HERO FAGET!"

Ayurveda (1)

rvw (755107) | about a year ago | (#42093675)

'We are creating a cure by uniting the contributions of surgeons, homeopaths, oncologists, Chinese doctors, nutritionists and spiritual healers.'

Homeopaths? Chinese doctors? Spiritual healers? "Uniting their contributions" is going to drag the net worth of the resulting mess down to below zero...

Reading your comment, it appeared to me that you rejected these alternative methods right away, but after reading it another time it's more about the "uniting" part. I have tried many alternative cures for my fatigue problems, like acupuncture, haptotherapy, ayurveda and more. I always try to find an explanation for things that work. I've tried Ayurveda, and although I have no idea what happened, it worked for me like nothing else. I didn't have to do anything, no herbs or pills, no difficult conversations, just laying down and let the therapist do the work.

Normally these alternative therapies work one day, because you relax, somebody pays attention to you, and after a day most of it is gone. With ayurveda, the first time I noticed barely an effect when I left, but the next four days were much better. For the next three months I went weekly, and by then the effect spanned a week. I kept on doing it at a lesser frequency for about two years, and it helped me a lot. Many times I tried to analyse what the therapist did, but I couldn't explain it.

In this sense, it could help cancer patients, as well as any patient, if they are open to this kind of therapy. Not by curing the cancer, but by making the patient stronger, and that could just be enough to support other treatments like chemo.

Re:Ayurveda (0)

Anonymous Coward | about a year ago | (#42094355)

tl;dr - "I got a handy from an 'ayurvedic' practitioner in a grimy back room in San Francisco, and my life has never been the same."

Re:Misguided (0)

Anonymous Coward | about a year ago | (#42093749)

Don't worry it will all go away once he's dead.

Remember even Steve Jobs who had the most treatable form of pancreatic cancer decided alternative medicine was the answer until it was too late! Sometimes thinking different isn't the answer.

Re:Misguided (1)

HPHatecraft (2748003) | about a year ago | (#42094121)

I agree with you for the most part. My wife is undergoing chemo for breast cancer as we speak -- she should be done in the next 4 - 5 months. It sucks, people. That is all that I will say.

She was given a BRCA test, and has no genetic propensity for [breast] cancer. WTF? Why did this happen?

Chemo f#cks you up. Some of the side effects continue after the patient has finished therapy. I really wish there was some other way. There was a point where we were frantically researching some "alternate" therapy, and had to settle on chemo because there just wasn't the certainty. There was some downright quackery bullsh#t that... I don't have words for it.

With my mother on a second round of chemo, and my wife starting her first (she's young, too), I stops and makes me think -- nothing like hitting and home personal to bring a distant concept to the forefront of your thinking. I hope none of you ever have the opportunity to visit a "chemo room". Dozens of miserable people sitting in chair and and being pumped with poison. You know that is how syphilis was cured by some physicians back in the day?

So I started to think -- why is this happening? It seems like some groups -- cultures, segments of society -- seem to have less incidence of cancer and illness in general. When I brought this to the attention of the oncologist -- I had mentioned 7th Day Adventists, the traditional, non-Western Japanese diet -- she sort of glazed over. Pharmaceuticals seems to be the answer for everything.

I think that diet, a sedentary life style, stress, being constantly exposed to chemicals -- pesticides, etc -- is very likely a large determinant for contracting cancer. I am slowly talking my wife around to the idea of exercising regularly and eating good, healthy food. We have no choice but to have her undergo chemo, but when this sh*t is done, I want her to stay cancer-free.

The Oriental medicine? I think there is something to it. I think Asian medicine is good for prevention, and that Oriental and Western medicine are complementary. Using acupuncture to for clogged arteries, not so much. How did the arteries get clogged in the first place, though?

Yes, please. By all means find a cure. While "they" are at, find out why it is happening in the first place. The medical/drug industry doesn't have a stake in that, however.

I apologize for the ramble, but sometimes it's nice to get this sh*t off your chest.

Sweet, but the interesting implications are (1)

Gr8Apes (679165) | about a year ago | (#42093153)

It's nice that he's getting lots of support and poems and such.

The really interesting thing is that this displays that doctors need to have an information sharing system that is more real time and more collaborative. It's not surprising, you can read news stories and such any week and find stories where a doctor misdiagnosed or used an outdated treatment to bad ends. You'd think that one of the AMA's and like organizations purposes would be to keep doctors up to date, but we'll have to defer to a doctor on how well that purpose is fulfilled, and whether the "problem" doctors are just negligent in keeping up.

I also don't believe every patient can benefit from this approach, as then doctors would be spending all their time reading the internet instead of helping patients. Obviously that won't do. What they really need is a searchable database that will actually work for the problem domain, and perhaps could be searchable by patients too. Never hurts to have access to more information, as long as it's presented in a normalized format.

Re:Sweet, but the interesting implications are (0)

Anonymous Coward | about a year ago | (#42093181)

This system already exists. It's called the pharmaceutical industry. They already have the doctor's ears, and are telling them what does or doesn't work.

Re:Sweet, but the interesting implications are (0)

bre_dnd (686663) | about a year ago | (#42093265)

My dad died of cancer.

Most stuff "doesn't work". Cancer is a terrible disease that has *some* medicines that prolong life, by a bit, but few real cures. About the only thing that has been proven to work is chemotherapy, and that's a race -- poison the whole body, hope that you *just* out-poison the cancer and the body has enough resources left to recover. Few win the race.

Given that track record, of the "best the pharmaceutical industry has to offer" I can understand the clutching at straws. My dad, towards the end, signed on for some experimental treatment, hoping to at least add a datapoint to the body of knowledge. A large part though, is simply coming to terms with the fact that, yes, if you've been diagnosed with cancer, you will probably die of the disease.

Re:Sweet, but the interesting implications are (3, Informative)

LurkerXXX (667952) | about a year ago | (#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:Sweet, but the interesting implications are (1)

bre_dnd (686663) | about a year ago | (#42094663)

On reading back I realize I sound slightly bitter, and I would not want people to just give up hope. My dad's case was lung cancer -- even though he was not a smoker -- with, according to the stats you point to, a 6% survival rate after 5 years. This happened 10 years ago, I realize our understanding of cancer has improved and more options have become available, but your prospects still don't look great.

Re:Sweet, but the interesting implications are (1)

SecurityGuy (217807) | about a year ago | (#42093967)

I'm sorry about your dad.

Cancer is a lot of different but related diseases, though. Some of them are quite treatable and curable. I have a few members of my extended family who had cancer 5+ years ago and are cancer free now. I went to high school with a kid who had cancer. He's still alive and doing well today, and that was a long time ago. Of course, I also know people who have lost this battle. It's not a death sentence for everyone, though.

Re:Sweet, but the interesting implications are (1)

bre_dnd (686663) | about a year ago | (#42094697)

My dad's case was lung cancer -- even though he was not a smoker -- with a 6% survival rate after 5 years. This happened 10 years ago, I realize our understanding of cancer has improved and more options have become available, but your prospects still don't look great. Sad as it may be, your *should* realize fully that your case may *not* be one with a miraculous happy ending.

Re:Sweet, but the interesting implications are (1)

mcgrew (92797) | about a year ago | (#42094603)

It depends on the cancer. Caught early, most breast cancers are survivable. Most forms of skin cancer are easily remedied. It also depends on how long the cancer grows before it's diagnosed. I had a close friend who had been in pain for quite some time and only went to the ER when the pain was unbearable, and she'd had a cancer on her gall bladder that was bigger than the gall bladder. had she sought treatment far earlier, she might still be alive today rather than dying horribly four months later.

OTOH, if you get lung cancer, you're dead. Period.

Re:Sweet, but the interesting implications are (0)

Anonymous Coward | about a year ago | (#42093279)

It's called the pharmaceutical industry.

Lucky for us they are not biased in any way at all!

Machine of Penalty (0)

Anonymous Coward | about a year ago | (#42093217)

Simply misunterstood, I would agree. It will take us another gazillion years to cure that f*cker. Sadly...

www.weka-sauna-holzprofi24.de

My 2 cent cure (0)

Anonymous Coward | about a year ago | (#42093285)

We have so much computing power now, can we control 1000 microwave beams from 1000 angles with their wave peaks tuned so they coincide to burn the tiniest point in a person without affecting the outside of the body (because the microwaves are too low).

So you need to detect what is a tumor cell, and given the improvement in computing we can zap it quite easily now. Even in a body that's not stationary. We can simply compensate for any movement.

So it comes down to how to flag a cancerous cell.

But then I also read Slashdot on the idea of preventing the tumor from encouraging blood vessel growth and thus starving it of oxygen. The tumor releases something that causes the body to make lots of blood vessels, needed to feed the cancer cells.

So can we not detect instead, the increase in blood vessels which must be near the tumour and zap those instead? We map the person's blood vessels, over time and where they grow too fast, we zap them. That must be associated with the cancer, so by zapping the unusual blood vessels we stop the cancer from getting the oxygen it needs?

I'm sick too (0)

Anonymous Coward | about a year ago | (#42093301)

I'm a chronic pain sufferer (Right rib area) with no known reason for it. I've had MRIs, cameras up my ass, down my throat, bits cut out and everything else you can imagine. I'm at the point where I feel doctors are frustrated as much as I am and instead of trying to look for more stuff they are telling me to just deal with it and try to live a normal life (like you can live a normal life when it feels like you have a flaming poker in your chest).

I have been considering making some videos explaining my condition and posting them on You tube to see what people have to say about it. I'm sure many will just insult me or find it an entertaining freak show, but when the system fails you, why not try asking for other people's suggestions? Maybe I have some ultra rare condition that most doctors can't pick up or have never even heard of. I'm aware my chances are slim to none, but what harm does it do to try and crowd source some information? Even if 99.9% of it is crap and 1% says "eat cheerios more often, it will make you feel happier", I haven't lost anything other than a couple of hours of video editing and some pride.

Re:I'm sick too (1)

Jmc23 (2353706) | about a year ago | (#42093397)

If you are serious, send me a link. I would need to see standing, sitting postures, walking gait, and range of motion of the upper body to start.

I used to have chronic pain and various other problems for the first 35 years of my life. I'm much better after i decided to research the human body instead of having some average doctor with no ability for data synthesis just repeating things they've memorized by rote or been paid to advertize.

Re:I'm sick too (0)

Anonymous Coward | about a year ago | (#42093615)

I'm 100% serious.

Do you have an e-mail or something I can contact you on?

Re:I'm sick too (1)

Anonymous Coward | about a year ago | (#42093711)

Through the miracle of crowd-sourcing, you will also see Jmc23 posted a whiny bitchfest above about how the pharmaceutical industry wants to keep people sick and not cure diseases, and how the entire pharmaceutical industry and medical training is full of junk science that can't be trusted.

This puts Jmc23 firmly in the "claims to have mystical superior knowledge of things based on the fact that he's a skeptic" camp.

This means that Jmc23 should probably not be relied on for ANY medical advice, ANYwhere, at ANY time, and taking his advice could leave you an armless, handless, deaf-mute vegetable who pisses through a straw and shits into a diaper.

You have been warned.

File types (0)

Anonymous Coward | about a year ago | (#42093349)

I had no direct access to my own information, since I use Linux and OSX rather than the files' Windows-based viewer. As a software engineer, I found software and programming tools to hack the files and make them open

Is this a joke?

Re:File types (1)

fuzzyfuzzyfungus (1223518) | about a year ago | (#42093473)

It sounds like a (poor) attempt to describe being handed a burned DVD with a bunch of DICOM [cabiatl.com] files on it and some shitty EZreaderlitecrippleware.exe application set to autorun.

If you've never had the pleasure of being sick enough to get them to break out the cool diagnostic imaging gear, it might well have come as a surprise to you that that's how it works. However, describing the process of typing "Linux DICOM viewer" into google and trying a few things as "hacking the files" seems a bit much...

Is this really a positive thing? (1)

Shaiku (1045292) | about a year ago | (#42093407)

Reading the summary, I thought: "Open the gate and let loose the quackery!"

Inviting EVERY random idea seems more like desperation than progress. For this to ever be effective, they'll need to filter out the previously debunked nonsense.

Re:Is this really a positive thing? (1)

Abstrackt (609015) | about a year ago | (#42093789)

The first step of good brainstorming is writing down every idea that comes to mind, no matter how bad, because sometimes a terrible idea can inspire a good one you wouldn't have had otherwise. This project does seem to be fueled by desperation but I still think it has potential, if only as a thought exercise.

Protip: if you're looking for a cure for cancer (1)

Rogerborg (306625) | about a year ago | (#42093483)

The guy who actually has it is going to be so rich that he's living on his own private moonbase with a harem of Scarlett Jonannson clones.

You are not going to get better by taking free advice from smelly hippies and Doctor Trollface.

Re:Protip: if you're looking for a cure for cancer (0)

Anonymous Coward | about a year ago | (#42093581)

"That's Troll-fah-say!"

Re:Protip: if you're looking for a cure for cancer (0)

Anonymous Coward | about a year ago | (#42093985)

harem of Scarlett Jonannson clones.

Make them willing Scarlett Johannson clones, and I'll have a cure by Christmas.

The crowd... (1)

Anonymous Coward | about a year ago | (#42093503)

The problem with crowdsourcing stuff like this is that the majority of "the crowd" consists of dumbfucks.
Now of course it consists of dumbfucks for every other kind of crowdsourcing as well, but in most cases in doesn't matter.

My ex (5, Interesting)

ledow (319597) | about a year ago | (#42093613)

My ex was in chronic joint pain for years. She was told by leading medical experts that it was arthritis (before she was 30) and prescribed all kinds of arthritis medication and treatment over decades for it before giving up because nothing really worked.

When I started living with her, I spotted lots of problems she had with movement and joints and I had to explain to her that, no, it's not normal to hurt all the time, or to dislocate your shoulder by opening a jar of sweets. We googled around, and put a lot of footwork into avoiding quackery, and ended up discovering about hypermobility syndrome (now call JHS, where J = joint) purely by chance. The doctor had never heard of it and was interested in it up to a point.

Basically, her DNA codes a few dodgy things that make her cartilage weak. Most people have JHS in some form or another but if two people with particular bad cases coincide to make a child, the child is *generally* worse. There's also an even worse form called EDS where sufferers are in a wheelchair from birth.

This gives some sufferers chronic pain from being a baby while others just become good ballet dancers (huge amount of flexibility in the joints, which *can* wear the joints to the point that inflammation of tissue and joint damage results). My ex was a professional black belt karate instructor throughout most of her painful years (because flexing joints made them no worse, and was not a way to induce the pain - a clear sign that it *wasn't* arthritis from the very start.

In the end, we gave up on all the doctors she'd had previously, and researched it ourselves. We hit at random upon a rare condition that had almost zero information on it at the time. Apparently there was one guy in the country doing research on the condition when we discovered it (and other sufferers we met up with describe him as one of the most arrogant and ignorant doctors they'd ever met - telling tiny slips of girls that were not far off transparency that they were obese and he wouldn't treat them, etc.).

We FORCED her current doctor to refer us to a specialist. We were referred to a consultant who dealt with arthritis. However, he was bright enough to look and say instantly "You don't have arthritis, you have hypermobility" and write us off with a confirmed diagnosis that the doctor would at least accept to prescribe more suitable medication for (i.e. not arthritis medication which worsens the problem because the condition is the polar opposite of arthritis).

Beyond that, she never got much help and still has the condition. Variably over the years she's been registered disabled and able to run a karate club (though not simultaneously - the condition is always present but the severity varies greatly with seemingly random triggers and even things like the weather).

Bear in mind that all this happened in a country with free healthcare.

- Doctors can't know everything.
- Even those that are specialised in your area might not help you at all.
- Even those who want to help often can't find out enough to get you to someone that helps.
- Even those with a real interest on the cutting edge of research may be able to do no more than prescribe a painkiller and sign a form for you.
- The human body is more complicated than any one person, or even group, can ever understand.

But, that said, we went to great lengths to avoid quackery. At a residential weekend for sufferers, there was one true doctor who gave a short 10 minute presentation and then tried to escape before he got hounded for everyone's personal problems. 50% of the rest were salesmen trying to flog memory foam pillows and other junk to "help your condition". The other 50% were nothing more than charlatans (I shall never forget being in a Reiki healing class for moral support - against my will - and there being a ten-minute interlude between the instructor and a student where one "saw colours" with her eyes closed and then they discussed how insightful and "in-touch" with Reiki that made her while ignoring the WHOLE of the rest of the class - maybe because we were all giggling profusely at the time).

If you have a condition, try to find the source yourself even if it just confirms the doctor's diagnosis. I would happily and regularly trust my life to the medical establishment but, fortunately, outside of tiny little niggles have never needed to. But even so, I wouldn't accept a doctor saying there's nothing they can do, or nobody who knows, or your condition is unknown. And I *wouldn't* turn to charlatans and their nothing-but-placebo treatments to help.

Re:My ex (1)

girlinatrainingbra (2738457) | about a year ago | (#42094005)

At a residential weekend for sufferers, there was one true doctor who gave a short 10 minute presentation and then tried to escape before he got hounded for everyone's personal problems.
.
And this guy in Italy has turned this around on its head and put all his medical records on line for all to see, hoping that the doctors will swarm to him and he can agglomerate all of that into "the cure" for himself. Whereas since he's acknowledging the homeopaths and spiritualists and quacks who've been responding to him, he's getting responses from those who are like the rest of the salesmen at that residential weekend: selling things that don't work.
.
Best wishes to you and yours, and you did a great job helping her and supporting her and finding your own way through and with keeping on the rational/medical path. It's separating the wheat from the chaff that's the tough part and that tough part is exactly what the patient and the patient's family and support system (like you :) ) have to do: find out what is applicable and push as many buttons as needed to solve the problem.

Can Dr Burzynski's treatment do more good here? (0)

Anonymous Coward | about a year ago | (#42093773)

...or, alternatively, another researcher's "Electric Field" treatment?

I learned of Texas-based Burzynski's successful cancer treatments
from the documentary movie:

+ "Cut, Burn, Poison"

I learned more about them from another documentary film
(recently re-released, in an extended edition,
which now includes 2 DVD's); the title remains the same:

+ "Burzynski - Cancer is Serious Business"

I recommend both movies to folks with cancer, as well as a talk
at http://TED.com on the "electric fields" treatment.

Re:Can Dr Burzynski's treatment do more good here? (1)

ledow (319597) | about a year ago | (#42093943)

Bloody hell, people still push that shite?

And the movie you linked? "simplistic to the point of idiocy" it's been called. That makes me wonder exactly what you learned from them than a highschool textbook could have taught you better.

For anyone else posting - this is serious quackery here, leading in lawsuits and charges of administering illegal medicine by various private individuals, groups and government departments.

Or a conspiracy theory to stop cancer treatment reaching the masses. You decide. I'll go with the former.

But has he actually FOUND anything useful? (1)

sirwired (27582) | about a year ago | (#42094067)

It's all well and good that he received all these notes from thousands of well-wishers, but has he actually FOUND anything useful for his case? Awake brain surgery is neither particularly new nor innovative; it's been in use for years. It beggars belief that his current treatment team was unaware of the technique. And I don't think all the kooks trying to cure his cancer by nutrition, spiritual healing, yoga, homeopathy, "Chinese Medicine", etc., really have that much to contribute, cure-wise.

Zombies (1)

macraig (621737) | about a year ago | (#42094137)

Zombies can cure cancer: they'll just as happily devour your brainz whether you have it or not. "You will be assimilated. Resistance is futile. Your distinctiveness will be added to our own."

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