Quackery is Woo & Vice Versa

[MineralMan]

[MattBaggins]

1. The last one is perfect

[MineralMan]

2. I liked that one, too. nt

[Ms. Toad]

8. It certainly describes and illustrates perfectly

many of the attitudes on DU which treat "medicine" as inherently different from "woo" - particularly the hostility to criticism, and the insistence on a mostly imaginary dichotomy between "medicine" and "stuff that has not been proven to work."

Far too many of the people jumping up and down shouting "woo" are sorely misinformed about whether the "medicine" they defend so strongly as "evidence based," really is - and are seeing a bright line distinction where there is none.

As one specific example, more than twenty percent of medications are prescribed for off label uses. (The estimates I have seen range from "more than 20%" to 25%. Off label means (generally) they are being prescribed to treat a condition it has not been proven effective and safe to treat, or a population in which it has not been tested. Over time, some of these off label uses are studied, and evidence developed for its use in that manner and/or population - but even so, "most off-label drug . . . (73%; 95% confidence interval, 61%-84%) had little or no scientific support." (same article)

That doesn't mean off label use of traditional pharmaceuticals is evil and should be treated with the disdain which is reserved here on DU for "woo." But the reality is that most people never know they are the subject of unregulated experiments with unproven stuff by their doctors, and believe that because their doctor prescribed it for them, it must have been "proven to work."

Off the top of my head, I can come up with seven medications I or my family have been prescribed recently in a capacity I know to be off label - because I frequently do the research to check. Five were not proven effective for the condition being treated (including one which was the subject of a trial halted mid-stream because the results were unexpectedly negative), and two were not proven safe for the age of the person taking it (and one of those now bears strong warning labels because later research - after more than a decade of off-label use - proved it was dangerous in puberty and the years surrounding it). Our doctors only expressly told us that three were off label - two because we were taking part in medical trials to explore efficacy, and the third because the insurance initially rejected it because it was expensive and off label. I'm absolutely positive that I could look up the approved use for the medicines currently in our medicine cabinet and find a half dozen more which are off label, as prescribed. That's just how medicine works. If the FDA has approved it, doctors can - as a general rule - and do prescribe it for anything they want, whether or not there has been any testing at all to support that use, or to determine that it is safe for the population s/he is prescribing it to.

The bottom line is that there are far too many medical situations for which nothing has been "proven to work." So the choice is often not "woo" (if you define that as stuff not proven to work) or medicine (if you define medicine as stuff "proven to work&quot - the choice is far more often what is the best course of treatment when no treatment at all is "proven to work." The kind of hostility to "stuff not proven to work" which is a long-standing problem on DU does not help anyone who is stuck with no proven treatment learn how to evaluate what evidence there is as to safety and efficacy; what theories there are about disease and treatment pathway, what is likely to happen if nothing is done, and how to make informed decisions about treatment from among the many "not proven to work" treatments (traditional or CAM) which may well be the ONLY options available.

[Liberal Veteran]

3. "Natural" has always been my favorite. Especially with the "all-" prefix.

Treat what ails you with all-natural hemlock!

Remove those tough stains and acne with all-natural magma!

[MineralMan]

4. It's naturally good for you!

Try our all-natural arsenic skin creme for all blemishes!

[MattBaggins]

5. Needs to add processed to the list

that is the new meaningless word du jour.

[progressoid]

6. Tide goes in...

[mopinko]

7. thanks for this. woo kills.

my niece died a horrible death after trying to cure her lung cancer with brown rice and shark cartilage. she might well have died anyway, but she died in horrible pain without any palliative or supportive care. her parents were the force behind the thing (she was just 20 when she got sick), and will never forgive themselves, or each other. now divorced.

i don't get into these things too often, but really, wake the fuck up people.

[Ms. Toad]

10. By the definition of "woo" being bandied about

(not proven) the majority of traditional medicine is also woo.

That is not to say all treatments are equal - that is the point of doing your research, to find out which treatments are more likely than other treatments to make the situation better than worse. Name calling and slapping inflammatory labels on certain forms of treatment does not help people understand when the treatment proposed by their provider (whatever flavor of care provider they are seeing ) is more theoretical (or even fanciful) than proven. It does not help them learn how to evaluate the evidence which supports whatever treatment they are considering, learn how to research to find evidence. It does not help them learn how to evaluate what evidence they do find, and to make responsible choices based on a comprehensive understanding of the information available.

It wasn't "woo" that killed your niece, it was cancer (ultimately) perhaps hastened by her parents' inability to do the kind of research their daughter needed them to do in order to make sure that even if her cancer was ultimately incurable, she wasn't cut off from palliative and supportive care.

[MineralMan]

11. Here's the thing:

Brown rice and shark cartilage cannot do anything for ANY cancer. It simply cannot. If a patient relies on that, the cancer is sure to continue to grow and eventually kill the patient. No question about it. Neither thing has any effect whatsoever on cancer.

On the other hand, seeking and following medical advice, which might include chemotherapy, surgery, or other things, might have saved or extended that person's life. There is no guarantee of that, but some of the treatments do, indeed, work in a sizable portion of cases. They've been tested to the point that an oncologist can give you a pretty good sense of the odds of success. Then, you can make a decision about what to do. In addition, modern medicine can provide effective palliative care when treatment isn't successful.

Brown rice and shark cartilage is 100% guaranteed to do nothing at all for lung cancer. Nothing. That is why it is woo. That is why it is quackery. That is why people who rely on such things die without ever having a chance of a remission or an extended lifespan.

Quackery cures nothing. In most cases, illnesses are self-limiting, so it doesn't matter all that much, except to the wallets of those paying for the quackery. In illnesses that are not self-limiting, which a patient doesn't know unless he or she gets a proper diagnosis, quackery kills, because patients who believe that they are receiving treatment when they are receiving nothing, just get worse.

Yes, people need to investigate the treatments they will receive. In the case of modern medicine, that research is really pretty easy. You can find reliable, informative sources to examine. Every prescription drug, for example, is required to provide a complete list of how it is to be used, for what, and what possible side effect you might experience. The same, however, is not true for alternative medications. When you attempt to research them, you can find only anecdotal evidence, advertising nonsense, and information that is not reliable in many cases.

It is not always an inability to do research that is the problem. It is often an unwillingness to do that research. It is often a belief that magical thinking will fix things and a willingness to believe anything one reads on the Internet that is the problem.

[Ms. Toad]

12. Except that you are wrong on two accounts.

Every prescription drug, for example, is required to provide a complete list of how it is to be used, for what, and what possible side effect you might experience.

That list you mention only applies to the use which is not off label. Around 25% of prescription drug use is off label. That means the use is not included in that list, or the population was not part of the group it was tested on, and even for the use tested the side effects and efficacy may well be different when used to treat the same disease in a different population. For about 75% of the off label use, there is little to no research available. And that's just prescription medicine. And - the vast majority of the time your doctor never tells you the use is off label so you don't even know you need to do the research.

The same, however, is not true for alternative medications. When you attempt to research them, you can find only anecdotal evidence, advertising nonsense, and information that is not reliable in many cases.

Try spending some time in pubmed, as a shortcut to going directly to applicable peer-reviewed journals. You are correct that good research is harder to find, but you are not correct that "you can only find anecdotal evidence, advertising nonsense, and information that is not reliable in many cases."

There probably isn't much serious disagreement argument about the extreme outliers on the health care spectrum (like shark cartilage and brown rice to cure cancer, on "way out there" end, or antibiotics to treat a bacterial infection which that particular antibiotic is known to target on the "pretty darn certain" end.

The problem is that the people running around yelling "woo" are taking the entire middle spectrum - where things are not so settled, and calling anything in the CAM realm "woo" - while completely ignoring (probably because they are not aware) how much of traditional medicine has no more proof than the stuff they are labeling "woo." (And, as a consequence, are both trusting treatments they shouldn't - because they are completely unaware their MD or DO is engaging in experimental use; and are missing potential opportunities to use CAM treatment options which have just as much data to support their use as much of the traditional medicine which is they presume to be effective. In other words, many people are relying on magical thinking without even realizing it, because the proponent of the magical thinking is their MD or DO.

As to shark cartilage, there are 84 articles available in pubmed- including at least one "two-arm, randomized, placebo-controlled, double-blind, clinical trial," testing to see if it was effective to treat - or change the quality of life - for incurable breast and colorectal cancer as a complementary medicine. So there's no need to slap a label on it - just do the research and make a decision based on what you find. The same as you should do for every other potential treatment - especially for any serious condition (regardless of the kind of practitioner being seen).

[mopinko]

16. it was research on the interwebs that convinced them she didn't have cancer.

and led them to the charlatan that took them for $1000's.
she had a 50/50 chance according to the drs. if they had tried to get any sort of pain care for her, they would have had a very hard time finding a doc willing to stand by and let her die.

this is exactly how woo kills. as imperfect as our knowledge of real medicine is, it is real knowledge, real science, and does help real people. actually cures people's cancers.
shark cartilage is the very definition of woo. it gives the unconscious image of the fierceness of sharks. and that is it.

proven medicine may not be perfect, but we no longer expect wounds to ooze laudatory pus after surgeries, we no longer irradiate kids tonsils, and above all our knowledge of cancers, how they work and how to stop them has grown exponentially in the last couple of decades. there is still a long way to go, but the big difference between proven medicine and woo is that science learns from it's mistakes. woo believes no "knowledge" from the past ever gets surpassed. it does not learn.

[etherealtruth]

26. My first career was as a Hospice nurse

I can't say I saw a lot of this ... but, I saw enough of it to refuse to keep my mouth shut in the face of quackery.

Desperate people do desperate things ... and suffer greatly for it!

[MineralMan]

29. The shark cartilage thing came from a book.

The book came out in 1992, and is still in print. As it turns out, the logic of the book went sort of like this:

Sharks don't get cancer.
Sharks have cartilage instead of bones.
Shark cartilage cures cancer.

The logic was wrong of course, even if it's true that sharks don't get cancer. But even that isn't true, as has been demonstrated by finding cancerous tumors in sharks. Nobody really looked for cancer in sharks.

The author of the book, I. William Lane, was a Doctor, but not of medicine. He died in 2011, hopefully not of cancer, I guess. He had a Ph.D. in biochemistry and nutrition, and pioneered his revolutionary, but incorrect treatment methods. He also made a lot of money selling his bogus shark cartilage to unsuspecting patients who had read his incorrect theories in that book, it's sequel, and another book he wrote about skin cancer.

Scientific American debunked his nonsense, here: http://blogs.scientificamerican.com/science-sushi/2011/09/01/mythbusting-101-sharks-will-cure-cancer/

He faced a number of government actions against his quackery as well. You can learn more about that at:

http://www.quackwatch.com/04ConsumerEducation/News/shark.html

Sadly, his books caused many people to forgo real medical treatment, which led some to die untreated of cancers.

Quackery writ large.

[Liberal Veteran]

31. Correlation implies causation, doncha know?

[MineralMan]

32. I knew it. Organic food causes autism.

Your chart proves it.

[Ms. Toad]

30. I'm not advocating interwebs research

(although that can form a starting place that will give you ideas to guide your research). I am advocating responsible research (which includes learning to distinguish between yahoos on the interwebs, and reputable sources such as peer reviewed journals, websites which have earned respect for accuracy and depth, and so on.

And - you are mistaken about how much of what you call real medicine is "real knowledge, real science," or is "proven." The fact that you are still using those terms in this conversation tells me that you either did not read or did not understand what I wrote (or my response to mineral man).

Unless you are not taking any medicine, there is a very strong likelihood that your doctor is experimenting on you, without proper (in the scientific sense) protocols. You just don't know it, because he or she hasn't told you that the medicine you are being prescribed is being used in an off label manner (which means - roughly 3/4 of the time - that there is no scientific validity to using it as your doctor has prescribed it, or that it is safe (particularly if prescribed to a woman of childbearing age or a child)). Your entire last paragraph is based on the assumption that what your doctor is doing is based in science - and it often isn't.

If you understand that, you understand that you need to investigate what your doctor tells you to do every bit as much as you need to investigate acupuncture, or shark cartilage. Calling the latter two "woo," and what comes from your doctor "medicine" reinforces a dichotomy that just doesn't exist - and lures far too many people into just taking what their doctor says on faith. From personal experience with traditional medicine, I can tell you that is not a smart idea - and my daughter is paying the price (permanent scarring on one hand, and, disease progression from partial organ involvement to total organ involvement, and a diagnosis with a third disease which was made at least 5 years later than it should have been made).

Unless you learn to do your own quality research, and be your own advocate, both what you call "woo" and what you call "medicine" kill (or are at least not in your best interests). And if you are using proper research techniques, what you call the treatment is absolutely irrelevant.

[MineralMan]

33. I think you may be presuming too much.

I take two blood pressure medications. Both are generics. My doctor discussed the choices with me. One is a beta blocker and the other a calcium channel blocker. Each is in a low dose, carefully titred upward to provide the desired control without over medicating. I did my research and, combined with my primary care physician, we decided how to handle the issue.

The only off label medication I ever use is for my occasional bouts with cluster headaches. After having them for several periods over three decades and working with neurologists and internists, I now understand this unusual condition as well as they do, and have researched every aspect of cluster headaches. Three years ago, when they started up again, I discussed an experiment with imitrex with my internist. I explained why I thought it was worth trying. For me, taking it prophylactically prevented the onset of the predictable headaches for about eight hours. If I did that daily for two weeks, the cluster ended, instead of going on daily for months. Definitely off-label, at least for now. A clinical trial is now underway for this protocol.

You assuming something you do not know about the person you replied to. That is usually a mistake.

[Ms. Toad]

35. You are not mopinko.

The comment to which you responded was directed to mopinko, not you. It was based, in large part, on the specific content of that post. My response to you, was about two inaccurate comments you made about the (un)availability of research about non-traditional treatments, and about the assertion you made about prescription drugs which you worded in a way to imply safety and efficacy standards which are laregely inapplicable to the very frequent off-label use of prescription medications

Your description of how you decided to use your off-label medication is very much in line with how I decide what unproven medication or treatment to pursue or to verify which treatments are proven because, in large part, doctors don't mention that little fact when recommending unproven treatments. But you already know that my general assumption about how little people really know is pretty accurate - because otherwise there would be no reason for you to worry so much about about people being taken by what you call "woo," because if people really did follow that process, it won't take much for them to find out that shark cartilage is not a very good option.

[mopinko]

34. you expect much of people with a dying child

which, of course, is the point. we are all in this together, the vulnerable and the strong.
you also do seem to assume i am some sort of idiot. i am pretty sure my shoes would be a little large for you. you would have a tough mile to walk in them.
i read what you wrote, just happen not to agree.

[Ms. Toad]

36. I was responding to what you wrote.

which strongly suggests you are either unaware of (or are deliberately understating) how commonly MDs and DOs use treatments for which the safety and efficacy is unproven.

As for expecting much of people with a dying child - yes I do. That is part of their job as parents - the same job I am doing with my own child who was diagnosed with a rare liver disease for which there is no known treatment, short of a transplant, with a average time from diagnosis of 10 years to death or transplant.

[mopinko]

37. suggest away.

you don't know me. but i have a sick kid too, and know that little in pediatric medicine is tested in the same way that adult drugs are tested. if it weren't for off label uses, children would likely die left and right. at pediatric research hospitals, research is carefully carried out on drug that have proven safe and effective for adults. nothing that does not pass that test even gets in the door. without that leap, children die.

honestly, i hope your story is bs. so little compassion and understanding from someone in that situation would be really disgusting.

[Ms. Toad]

39. As I suggested earlier -

Most new drugs, when used for children, are used off label. And when they are used off label when they are newly released it is usually well before that research is done. At age 4, my daughter began using her first off label drug. At that time there were only 22 children reported in the literature (two articles) as using that drug for the disease they were treating in my daughter. Two years after she began using it, the first long term study (10 years) based on a review of the charts of patients who had been using it off label was published. It included only 33 children with her condition - with an average treatment duration of use of less than a year. Incidentally, the very first report on 19 children showed that children seemed to process the drug differently than adults.

So - I know from first hand experience that research is not "carefully carried out on drug{s} that have proven safe and effective" for adults before they are routinely prescribed for children. And the doctor who prescribed this medication did not mention it was new. Did not mention it had not been tested with children. Did not mention how few reports there even were of its use in children. And you know as well as I do that if this had been in the CAM realm, anyone using it based on the reports of use for that condition in 22 people would be all over how those reports don't prove anything - and condemning the practitioner who promoted its use.

I am not suggesting those drugs not be used. It is critical that they are used - for the very reasons you point out (and the inherent problem that it is generally unethical to use children to research new drugs - so most drugs will be used with children before they are proven safe in the pediatric population, or equivalently effective for the use which would be on-label for adults). But the use needs to be with the informed consent of the parents, and parents need to take responsibility not only for good research into non-traditional treatments, but also into whatever traditional treatments are being used on their children. Our children's lives are literally at stake.

So what looks like a lack of compassion to you, is my anger at the "woo" chasing, while repeatedly reinforcing the myth that if it comes from an MD or DO it has been proven safe and effective. That myth is every bit as dangerous as what you call "woo." It is just less dramatic because the injuries inflicted using traditional treatments which have not been proven safe and effective are hidden in the statistical noise because most drugs have some failures and some side effects. The injuries only make a splash we hear about when enough data about the off-label use in a particular population or disease is gathered to make it undeniable that the presumed safe and effective treatment really wasn't (like the discovery that using certain anti-depressants in children dramatically increased their suicide/attempted suicide rate).

Anyone who is in the realm of using shark cartilage to treat cancer at least knows they are wading into unproven territory. Most patients of MDs and DOs are completely oblivious to the reality of how much of that treatment is also in unproven territory. I look at it the same way I look at sexual predator laws. When you label someone a sexual predator and focus your energies on teaching your children to avoid those labeled people, while at the same time insisting your children give Uncle Jerry a hug and kiss everytime they see him (even if it makes them feel creepy), they become more vulnerable to abuse by Uncle Jerry. It is far more productive to teach your children how to identify the warning signs of abuse regardless of whether it is the labeled sexual predator or Uncle Jerry setting them off. In other words - we need to shift the focus from labels to becoming informed medical consumers of whatever brand of medicine we're using.

[mopinko]

40. all i can say is

you seem to take me for quite a fool. but that would make you the fool.

[Ms. Toad]

43. I just believe categorizing things a "woo"/medicine is a very risky habit to get into.

Both because it makes people complacent about the risks associated with blindly following the doctor's order - and because a closed mind loses out on some important medical opportunities to take advantage of opportunities which are where a large part of medicine (traditional or CAM) is - somewhere between proven and not proven.

As for whether I take you for a fool - I am only responding to what you say. You made blanket statements that that traditional medicine is effective and safe, and that off label pediatric use of medications is thoroughly tested. Those are incorrect, as blanket statements. If you know better, as you are suggesting you do, then don't make incorrect blanket statements which might be pointed out to you.

[mopinko]

44. you are responding to what you think i said.

perhaps you should re-read what i wrote.

[NuclearDem]

9. I'm stealing the eight red flags toon there. Spot on, MM!

[zappaman]

13. Say what you want about the harness electropathic belt...

but it works for me!
So, science can eat it!

[SidDithers]

15. I've got an harness electropathic belt too...

But I only use it for off-label uses.



Sid

[MineralMan]

21. Heh-heh...

I see what you did there. I have an 1897 Sears Catalog. They sell "Electric Belts," too. They were the Smiling Bob solution of the day, I think.

Here's one of the Sears ones. See if you can figure it out:

[SidDithers]

22. Oh my...

Three times the power.



Sid

[MineralMan]

24. Indeed. I used to have a pretty good collection

of quack medical devices, but I never did find one of those electric belts. I looked for a long time, but never could find one to buy. A few years ago, I sold off my collection, piece by piece, on eBay. My favorite was also one of the least expensive: The Electreat Mechanical Heart. I had a brand new one, still in its original box. Looked just like this one:



It held two D-cell batteries. When you rolled the roller across your skin, it administered electric shocks. An early defibrillator, perhaps? No, just more quackery. Electricity was the magical solution to all of your health concerns, it seems.

[Pathwalker]

14. I wish wecould bring back the LET IT SINK campaign.

Divide, demoralize and conquer really only serves one purpose: to destroy DU. IMHO. Lee Atwater had a name for it.

[NuclearDem]

17. I thought it was progressives' job to protect the sick and vulnerable.

Discrediting pseudoscience is part of that.

[MineralMan]

19. I have just two words for you: Crystal vibrations.

That is all you need to know. Here's a link on the Interwebs that explains all that. Once you learn the vibrations you need, you can buy the right crystals there and solve all of your problems:

http://www.healing-crystals-for-you.com/good-vibrations.html

[MineralMan]

18. Thanks for the kick.

Apparently, you don't want the thread to sink.

[mopinko]

28. funny, i thought we were here looking for the truth.

we apparently need a whole lot more understanding of how to tell the difference between truth and bullshit.
think of this as good practice.

[Bluenorthwest]

20. When you were a young man, 'Medical Science' taught that gay people were diseased and

additionally, the 'best minds' engaged in 'treating' this disease to 'cure homosexuality'. This was done by the Scientific and Medical community for years, up until 1973. But the results of that dogmatic adherence to assumption posing as fact lingered on for years. Less than 10 years after Medical Science stopped claiming gay was an illness, they found themselves confronted with a health crisis of global importance, AIDS. The ignorant and stubborn belief in the things they had been taught caused may physicians and researchers to be utterly worthless bags of fear when they were most needed. They were afraid of their patients. Superstition ruled them.
Many years later I met a guy on DU who admitted he'd posted anti gay things all over the internet, a practice he said he had ceased. This guy told us on DU that he had long been 'mislead by incorrect information' about gay people being mentally ill, being unfit to raise children, that sort of thing. That guy claimed to be about 15 years older than me, meaning he may well have gotten that 'incorrect information' from the scientific community years before and simply never thought about it again. He may have accepted a false and pernicious dogma out of trust of the 'Medical Science community' and gnawed on that until DU taught him better. For decades, this guy believed a most dark and pernicious form of 'woo', assumption based quackery that posed as medicine for about 150 years, because 'the best minds' were unable to spot their own errors.
So yeah. That guy did great harm with his false beliefs, which did not come from religion as he says he is an atheist. Those false beliefs came from buying into bad and dated science and holding to it because it was called science when he first heard it. It was belief based on faith in an institution. Faith based.
Just saying. Some honesty around here would be a great tonic.

[mopinko]

27. sorta prove the point.

this is not the story now. science changes. science learns. woo doesn't.

[Vashta Nerada]

23. Great OP.

Especially that last comic.

[MineralMan]

25. Thanks. I've been interested in quackery since the 1970s.

I had a large collection of quack medical devices and even wrote an article about quackery for the now defunct Science Digest magazine, focusing on the bogus devices used in quack medicine. I've since sold all of them, in an attempt to scale down my stuff. There's a lot of stuff on eBay relating to quackery, if anyone's interest in collecting some affordable weird pseudoscience stuff. It's fascinating.

[grantcart]

41. On the last issue "Western Medicine"

What is referred to today as "Western Medicine" is based on a philosophical framework established by Sir Frances Bacon and Sir Isaac Newton.

Where did they get the basis for their ideas? From the Golden Age of Islam.

Much as "Western Mathematics" is based on the Arabic "discovery" of the zero so is medicine based on the scientific method which was first described by Ibn al-Haytham

More here:

http://www.democraticunderground.com/122469

[Orsino]

42. I would say that it becomes quackery when someone makes money off it. n/t