Searcher
Vol. 9 No. 3 March 2001
FEATURE
Charlatans, Leeches, and Old Wives: Medical Misinformation
by Susan Detwiler The Detwiler Group
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Vaccinations cause the diseases they're supposed to prevent! Drinking hydrogen peroxide will flush out your system! Milk is the best source of calcium! A 5-year-old boy suffering from low libido should take Viagra! Deep coughing at the onset of a heart attack can save your life!

Which of the above is true? Well, that depends on which direct e-mail you believe, which Web site you go to, whether you can trust the person who said it, or if you can even figure out who said it!.

Back in a 16th century village, you had barbers who acted as surgeons and trained physicians ("leeches") who kept up on the latest advances in medicine, such as new "cupping" or bleeding techniques. Apothecaries compounded and sold medicines, mainly herbal concoctions. Next-door neighbors supported you in your troubles by recommending meddlesome "old wives" who told you why the physician was a fraud. Charlatans came to town with noxious nostrums to cure what ailed you. As recently as the 19th century American West, the latter still circulated, earning the name of "snake oil salesmen."

They're all still here. Except instead of a few hundred people, the Internet's global village now numbers almost 200 million1. Each classic village resident still exists, but reach and resources are wider. Truth and good news move at the speed of electrons, but so do misinformation and tales of misfortune. Medical horror stories spread like viruses. Where once in the village bribery could be spied out through a hole in the wall, we now have to track down layers of who contributes to whom. And the potential for harm is multiplied by the very speed and reach that promises so much good.

This is especially true as more people connect to the Internet precisely because they seek health information. According to the Pew Internet & American Life Project2, 52 million American adults have used the Web to get health information. Ninety-one percent of these have looked for material relating to a specific physical illness. We gather everything we can get our hands on, and we're particularly vulnerable to misinformation. When we're sick, we often become like children, grasping at anything that will make the hurt go away.

Consider the notion that a sustained, rhythmic coughing can keep you alive during a heart attack, presuming you can make it to the hospital fairly soon. This marvelous news comes to you by way of Rochester General Hospital and Mended Hearts, a heart attack victims' support group. Or so the e-mail in your inbox says. This is great news! Uncle Larry should hear of it. And Mrs. Jones, your old teacher. And all your friends on the electronic list. After all, this could save someone's life. Not really. The truth is, Rochester General Hospital never said it; Mended Hearts, which published the item in a newsletter, has retracted it; and the procedure, which is occasionally used for specific types of heart attacks in emergency situations, is only done under professional supervision. In fact, the Washington Post of February 15, 2000, carried an article in which a physician at Brigham and Women's Hospital in Boston said the best thing to do in the event of a heart attack is to take an aspirin (to dissolve blood clots) and call 911.

Something like this is fairly easy to check at one of the many urban legends sites. If it were merely a harmless urban legend circulating through e-mail, one could laugh it away. But it doesn't stop there. This miraculous life-saving news is still circulating, still being posted in innumerable list archives and on hundreds of ostensible healthcare sites all the way from the International Medical and Dental Therapy Hypnosis Association [http://www.infinityinst.com] to MedicsIndex [http://www.medicsindex.org], a service of the Middle East Health Network. Registered in the United Kingdom and Jordan, MedicsIndex aims to create a single electronic database of health practitioners in the Middle East and Gulf Region. MedicsIndex still cites Rochester General Hospital and Mended Hearts as the authority for this mis-advice. The error even appears on the PaulingTherapy site [http://www.paulingtherapy.com], created by distributors of Linus Pauling's Heart Disease video. The version on the PaulingTherapy site ends with the line: "Note: Aspirin has also been touted as a life saver during a heart attack. Who are we to question national advertising and the findings of the United States government? We will point out that bleeding during and after cardiovascular surgery is a serious problem that is excarbated [sic] by taking aspirin." Does it seem to you that the note implies skepticism over the aspirin advice while approving the coughing?
 

Who Says and Why?
This is innocence run amok. The good people of our village genuinely want to believe they're helping others, and so they forward any e-mail that looks harmless and might help. Less innocent are one-sided facts and figures circulated by well-respected institutions.

Hospitals and educational institutions freely give health advice, and rightly so. But where does this advice come from? And who's behind the facts? It's not always easy to tell. Even legitimate organizations sometimes fall short of full disclosure. A large, well respected hospital in Indiana posts on its welcome page an internal link to the "got milk" quiz. Presumably, this fun little nutrition quiz has been checked for factual information by the Webmaster. Nowhere on the site does it offer the source for the quiz or its answers. But one tip-off: The phrase "Got Milk?" might indicate it came from a promotional dairy campaign. Links to photos of adults and children with "milk mustaches" a well-known marketing image of the dairy industry provides more evidence.

A search using the questions from the quiz yielded identical quizzes on at least three other sites: a community healthcare consortium in New York, a commercial dairy, and the Texas Agricultural Extension Service Urban Extension Program. None of them gave a source for the quiz nor its answers, but the extension service had a link for more information to http://www.whymilk.com. From Whymilk.com, it's a quick link to the http://www.familyfoodzone.com and http://www.nutritionexplorations.com Web sites. Here, the National Dairy Council proudly proclaims, "This Web site is developed by the National Dairy Council as a public service to nutrition educators, parents, and children."

Whymilk.com doesn't list its sponsor on the Web site, but a "whois" lookup at Network Solutions shows that this is one of the domains managed by the same public relations firm handling the official Web site of Dairy Management, Inc. Dairy Management is a joint effort of the Dairy Board and the United Dairy Industry Association and manages the programs of the Dairy Board, the National Dairy Council, and the American Dairy Association3. Dairy Management and its counterparts make good use of the Internet in getting out their point of view. Dairy Management owns a number of Web sites, all geared to promoting dairy products: butterisbest.com, cheeseforcalcium.com, chefcombo.com, dairyinfo.com, dairyinfo.net, dairyinfo.org, dairynutrition.com, dairyutrition.org, extraordinarydairy.com, ilovecheese.com, kidsfoodzone.com, milkinfo.com, nationaldairyboard.com, and nationaldairycouncil.org.

Who funds the programs of Dairy Management, Inc.? Well, through the Dairy Production Stabilization Act of 1983, Congress mandated a 15-cent-per-hundredweight assessment on all milk produced in the contiguous 48 states and marketed commercially by dairy farmers. The purpose was "to increase human consumption of milk and dairy products and reduce milk surpluses."4 So the general population's absolute conviction that milk is good for you is partly the product of a business decision on the part of Congress. It was bailing out the dairy industry by creating a marketing board to reduce surpluses.

How extensive is the influence of Dairy Management, Inc. and its counterparts? Going to the American Dietetic Association Web site, we find that DMI and the National Dairy Council each contributed more than $10,000 to the Association in fiscal year 2000, and the NDC Vice President for Nutrition and Health has been on the American Dietetic Association Foundation's Board of Directors for at least 2 years. A journal article found on the American Dietetic Association Web site Entitled "Effects of Increased Consumption of Fluid Milk on Energy and Nutrient Intake, Body Weight, and Cardiovascular Risk Factors in Healthy Older Adults"5 was supported by a grant from the International Dairy Foods Association.

Now let's make one thing clear. We are not against milk! Is milk, in and of itself, evil? Of course not. Is a trade association promoting its members' products evil? Again, of course not. But it behooves the public to know the source and any potential biases of any medical information or health advice. The Indiana hospital and the New York healthcare consortium do no one a service by promoting a trade association's point of view without disclosing the source.

In fact, looking at the answers to the quiz, the health-minded Web surfer might easily be misled. One True-False question posits "Lots of different foods contain calcium." The answer on the quiz is "FALSE. About 75 percent of the calcium in the food supply comes from milk and milk products...." Well, that still means that 25 percent of the calcium in the food supply comes from other sources. In fact, the USDA Food Pyramid says the average person only needs 2-3 servings of dairy a day, should opt for low-fat or fat-free versions, and can substitute soy-based beverages with added calcium as an option6. Worse yet, the final True-False question is, "I can get the calcium I need from a supplement." Astonishingly, the quiz answers FALSE, not based on the argument that you can't get the calcium, but because calcium supplements don't provide vitamin D. Since there are several calcium supplements which do provide vitamin D, and because there are other ways of getting vitamin D (including sunlight and full-spectrum vitamins), this seems extremely misleading.

Is the American Dietetic Association tainted by its association with the dairy industry? Probably not. In fact, the Association does a nice job of relating information on vegetarian and vegan diets. But users should always ask for full public disclosure. Give us the tools to be informed consumers and we salute you, but when we don't know where information comes from, or when it seems to come from someone other than the true provider, that ignorance can blind us to the possibility of bias.

Medem, a network of seven medical societies led by the American Medical Association, does a nice job of disclosing its supporters. Each page carries a list of sponsoring organizations. While pediatricians may not be thrilled that the infant formula producer, Nestle, sponsors the pages about breastfeeding and infant nutrition, at least the sponsorship is not hidden. The link to Nestle stops at a page which declares that the browser is leaving the Medem site and offers the option of deciding not to follow the link to Nestle7. In terms of our global village, we like to know who's paying whom, so we can decide if we want to buy whatever product sponsors push our way. Kudos to those who don't hide their sources of income.
 

Avoiding the Charlatans

There are many ways to protect yourself from both the unscrupulous and the well-meaning but misguided folks in the village. The Food and Drug Administration takes an active role, particularly in the areas of unlawful drug sales. As of October 2000, the FDA had issued 80 warning letters, 18 seizures, and 11 recall actions, as well as setting in motion seven arrests on criminal charges related to the Internet and two pharmacy convictions.8

The oldest system for validating healthcare Web sites, Health on the Net (HON), went live in 1996 with a system for identifying healthcare sites adhering to specific standards. HON is a Swiss non-profit foundation, begun through the workings of a 1995 consortium on telemedicine. While a HON certificate does not guarantee high-quality information, a site with a HON certificate must adhere to certain basic ethical standards in presenting information. There are eight principles [http://www.hon.ch/HONcode/Conduct.html, accessed December 31, 2000], which cover such items as sourcing the information, ensuring that readers know the information is only an adjunct to a doctor/patient relationship, providing clear disclosure of sponsorship or funding, and availability of direct contact with the Web providers. If a site has received a HON certificate, it may display that symbol on its Web site. Each certificate is assigned a number and linked back to the HON site. If you run your cursor over the certificate, you see a HON certificate number associated with the link, evidence that the certificate is still valid. Since a site must apply to receive the HON certificate, lack of a certificate is not an automatic disqualification. However, a valid certificate is a good indication of a site which adheres to at least certain minimal standards.

In 1997, the Internet Healthcare Coalition (IHC) was formed, dedicated to the promotion of high-quality healthcare information on the Internet. The coalition includes organizations such as the Association of Cancer Online Resources, PharmInfo, PanAmerican Health Organization, Medscape, Intelihealth, and other publishers and providers of health information. Much of IHC's efforts are directed towards creating a common code of ethics for health information on the Internet, and in May 2000, IHC released a nine-page International Code of Ethics for healthcare sites and services on the Internet [http://www.ihealthcoalition.org/ethics/code0524.pdf, accessed December 31, 2000]. This code is much more detailed that the HON code, but doesn't provide a certificate or indication of a site's adherence to it. Unfortunately, it leaves the researcher out in the cold, relying on his or her own efforts to determine if a site lives up to a high ethical standard.

In November 1999, the Health Internet Ethics (Hi-Ethics) organization was formed, from some of the largest, most widely used health resources on the Internet. Founding members include drKoop.com, InteliHealth, LaurusHealth.com, and America Online. In May 2000, Hi-Ethics released a set of 14 ethical principles [http://www.hiethics.com/Principles/index.asp, accessed December 31, 2000] for the health Internet, which cover many of the same principles as IHC and HON, but focus more on issues relating to commercial sites. Privacy figures prominently in its concerns, as does full disclosure of sources of funding and sources of data. Hi-Ethics members gave themselves until November 2000 to comply with the code; as of December 2000, Hi-Ethics had signed an agreement with TRUSTe, the leading online privacy seal program, to develop a E-Health Seal for sites which adhere to the HI-Ethics principles.

With three somewhat competing organizations developing similar codes of ethics, the Internet Health Coalition spearheaded a joint commission among them. In October 2000, the three organizations announced that they will work together to ensure that the e-health codes share a common terminology that the public can understand.

Meanwhile, however, barring the HON seal, there isn't a lot that can tell users at a glance whether a site is good or not. So what should an Internet health information seeker do? The answer isn't much different from what you should do if confronted with information in some other medium9. THINK!

First: Know what you're looking for. Even though it's difficult to stay calm and focused when you're considering the health of yourself or a loved one, remember that you can't find what you're looking for unless you know what it is. The old cliche, "If you don't know where you're going, any road will get you there," is as true here as when behind the wheel. Before sitting down at the computer, consider what it is you seek. Background information on a disease? Accepted therapies? Clinical trials of potential cures? Physicians or hospitals treating the disorder? If you know what you want, you're less likely to follow link after link, wasting time and getting nowhere. If the link you find doesn't focus on what you seek, go back to the search results and start again.

Second: Start in the right place. Starting in the right place may mean using a good search engine or starting with a known, high-quality, medical Web site. If you use a general search engine, be aware of how they rank the results. HotBot [http://www.hotbot.com] is a popularity contest. Top links are those receiving the most hits. Probably good for finding information about Britney Spears; not so good for medical information. Google [http://www.google.com] is much better. By ranking sites according to how many other sites link to them, the top sites are generally those with a higher credibility. It's not foolproof, but for diseases or disorders that are not extremely rare, the top sites returned by Google are usually good places to start. For more obscure items, AltaVista [http://www.altavista.com] may be useful, as it has an extremely broad base of sites in its inventory. However, AltaVista changes its ranking method periodically, so it becomes very important to scrupulously follow the remaining guidelines for evaluating results.

Professional associations of medical professionals who research or treat the specific disorder are excellent places to begin. Most of these associations maintain public resources on their sites, including actual information about the disease or links to organizations which will have more information. To find these associations, you can use a general search engine, but make sure you put in just the disorder and/or the treating physician type, and the word "association." Don't put in "cure," "treatment," or "therapy," or you leave yourself open to the charlatans who baste their sites liberally with the word cure.

Starting with a known quality, medical Web site is also a good idea, but the public generally isn't aware of them. You can start with the Health on the Net, Internet Healthcare Coalition, or Hi-Ethics sites to find links to their members. However, many, many other excellent sites have not bothered to register with any of these, despite their essential agreement with the principles of ethics. To find sites reviewed by professionals, you might start with Healthfinder [http://www.healthfinder.gov], from the U.S. Department of Health & Human Services; Healthweb [http://healthweb.org], a set of pages which include links to sites reviewed by medical librarians and professionals, arranged by topic; and the Hardin metadirectory [http://www.lib.uiowa.edu/hardin/md/], which maintains lists of places to find more lists of topic-specific resources.

Sites designed for medical professionals are also good places to start, as many of them maintain consumer-level information, as well. A few of the many good professional sites that allow non-professionals to get good information include Medem, Medscape [http://www.medscape.com], Healthgate [http://www.healthgate.com],Virtual Hospital [University of Iowa, http://www.vh.org]. For cancer-specific questions, two excellent places to start are the University of Texas MD Anderson Cancer Care Center [http://www.mdanderson.org] and Oncolink [http://cancer.med.upenn.edu/] from University of Pennsylvania Cancer Center.

Third: Maintain a healthy skepticism. In beginning journalism, students are taught that the lead paragraph of an article should cover Who, What, When, Where, Why and How. Evaluating information on the Web requires the same 5W's and H. Who wrote the piece? That is, is this a medical professional? Does the site give you credentials? Are those credentials valid? Look them up! What is the source of the data? If there are no footnotes or references, be skeptical. Even if there are references, subject them to the same scrutiny. When was this piece written? When was it last updated? If there's no date on the piece, how do you know it's still current? No matter how good the credentials of the site, outdated information is still outdated information. The Alzheimer's Disease Education and Referral Center (ADEAR) [http://www.adear.org] does very good work. However, its fact sheet on Alzheimer's is dated 1995. Several new advances in Alzheimer research have been made since then.

Where did the site get its funding? If the site seems bent on selling you the latest cure for the disorder, it's a fairly good bet that the sole purpose of the site is to sell products. Run the other way. If the site just happens to have advertising or prominently displays sponsorship by a commercial entity, it's probably a better choice. The key is to read the advertising or funding policy if the site makes it available.

Why was the piece written? The best bet is if the piece is solely intended to be informative, as part of a professional medical site (commercial or association). If the piece is written for the purpose of selling a product, again, run away. More subtle agendas may try to push a certain point of view for example, the People for the Ethical Treatment of Animals site might only publish information about the negative findings about milk, rather than a balanced view. If that's the case, it's important to learn about the site's agenda and balance it with alternative views maybe by touching on the National Dairy Council site, as well.

How did you find the information? This is a point many overlook. If you find this site through a series of links from other sites, remember that it retains the bias of every site prior to the one you're on. Just like in AIDS, where the professionals warn that you don't sleep with just one person, but with every person that one has slept with before, the site you're on is a product of the biases of every site which led you here. To get a different point of view, you have to go back to your original search results and start another trail.

Fourth: Give it the smell test. If the site promises miraculous cures or claims to cure different diseases with the same substance, it's probably a hoax. If it sells drugs without a doctor's visit, it's probably skirting the law. If it doesn't give you a way to verify the information, or if the most recent references are more than 5 years old, be wary. If it's a personal Web site, it's likely to have a personal agenda. If you found it through an e-mail, check one of the urban legends Web sites, such as urbanlegends.about.com [http://urbanlegends.about.com] or Urban Legends Reference Page [http://www.snopes.com]. In other words, if it smells fishy, it probably is.

Fifth: When in doubt ask a professional. Most medical librarians and professionals find out about new sites through networking with each other or reading their professional journals. It is their job to keep up with the best resources out there and they immerse themselves in the subjects. Many hospital libraries have consumer help desks; if not, librarians are happy to point you in the right direction to conduct your own research. If you're not sure about the information you've found, ask your doctor.

There are many ways to protect yourself from the charlatans, but it all comes down to the same guidelines as for everything else. Be smart. Don't turn off your brain. THINK!

Ouch!
Which brings us to the next problem with healthcare information via electronic media. "On the Internet, no one knows you're a dog." That's how The New Yorker cartoon caption summed up the comments of a high-tech dog explaining Net anonymity to his offline colleague, while corresponding online. When you go to your village physician, you know who you're dealing with. You can see the diploma on the wall. You know people who this person has treated. You can see if the place looks clean and if the doctor seems intelligent. You may be misled, but there are at least clues. Not so on the Internet. Anyone can claim to be anything. And even if you're dealing with a legitimate degreed doctor, how do you know if they're licensed in your state?

At least one Web site purports to diagnose an illness based on the answers to a series of questions. At the innocuously named Library of The National Medical Society (which on some pages also calls itself the American Medical Society), you lay down a $9.95 fee for access to its so-called library. Much of the information in this library is a set of links to sites full of free medical information, no-cost Web sites that you could seek out on your own. For example, you can link to the National Library of Medicine, The Merck Manual Home Edition (listed here as a Manual of Medicine), University of Iowa Family Practice Handbook, or RxList (listed as Drug Index). Other links connect to individual online textbooks published by other companies, such as eMedicine and the Internet Dermatology Society. Note that with the exception of the National Library of Medicine and the Iowa Handbook, none of these links are identified as not being part of the National Medical Society's "Library."

Mixed in with this potentially good set of links are one- or two-word links to treatises of dubious quality published by the "Library's" parent, CCS Publishing. By way of background, CCS Publishing is located in Laguna Hills, California, and publishes inexpensive, pocket-sized books that practitioners can use for quick look-ups. These pocket books have been put online in PDF format. Checking through one of them, Pediatrics, we find the author is Paul D Chan, MD. Dr. Chan also authored other books in the series Internal Medicine, Gynecology & Obstetrics (2002 edition!), Outpatient and Primary Care Medicine. None of these give references for the information in them; if you want references, you're directed to contact the publisher. The books are generally around 200 pages.

What about its journals? Yes, the Library of the National Medical Society also publishes journals. The Web site proclaims the current edition to be the current month. Under the heading Continuing Medical Education, the "December edition" of the "Osteoporosis" article was identical to the October edition.

Keep in mind that the following is supposed to come from a reputable medical journal, as you read this first paragraph of the "Osteoporosis" article in Continuing Medical Education:

If you were to take a biopsy of normal vertebral bone, you'll notice that there are a lot of trabeculae in all directions. Bone is very nicely designed to withstand the biomechanical forces that we subject it to....
And a later paragraph:
In order to understand how we get to this point, pathophysiologically, and how the interventions that we have in hand, that we can write prescriptions for that work, I need to remind you of the basic bone biology. I think the real take-home message is that bone is not static. That we don't grown to our adult height and then that's it for bone; it's an inert scaffold that we carry around with us....[sic]
A look at the references for this article shows none dated later than 1995. Authored by Barbara Wood, MD, there is no information about Dr. Wood's credentials. Searching through all 50 states at SearchPointe.com [http://www.searchpointe.com], we found a single Barbara Wood with an active license. This is likely not the author, as her specialty is Psychiatry. Truly, this is continuing medical education at its best.

And yet, the worst is yet to come. Remember that 5-year-old boy mentioned in the very first paragraph of this article? The one suffering from low libido and told to take Viagra? This is the place that gave the advice. One of the links provided by the Library of The National Medical Society is to Online Diagnosis, "Accurate online medical diagnosis of symptoms, illnesses, diseases, and psychiatric disorders." Linking here brings you to a list of more than 500 symptoms. The instructions say, "Click on your symptom, then enter additional symptoms to receive diagnosis." The possibilities start with Abdominal Fluid and end with Yellow Skin. In between is offered Anal Bleeding, Jaw Pain, Halitosis, Obsessive Thoughts, Vasculitis, Hypotension, and, of course, Sexual Dysfunction.

The Sexual Dysfunction page, which takes patient history, has a box for "Describe symptoms," followed by "How many days have the symptoms been present?," "How old is the patient?," a few additional queries, and "Male Patient" Yes/No, or "Female Patient" Yes/No.

When tested, it didn't seem to matter what you entered under symptoms, days present, or age. You could say you're a 2-year-old with an itchy nose. According to the source code for the page, only the last question has any bearing on where you're linked next. If you click Female Patient Yes, you're offered four options: "Low sexual desire," "Inability to achieve orgasm," "Painful intercourse," or "Vaginal muscle spasm during intercourse." If you click Male Patient Yes, you're offered three options. "Decreased desire for sex low libido," "Difficulty maintaining erection erectile dysfunction," or "Difficulty with ejaculation ejaculatory dysfunction." Click on that second option, and you read: "Morning erections present" or "Morning erections absent." Clicking on that first option (still remembering that we've identified ourselves as 2 years old), we're told to test with a Nocturnal Tumescence Ring. If no Nocturnal Erections are detected, treatment is recommended oral Viagra, surgically implanted prosthesis, or a vacuum tumescence device.

But what about a less-ridiculous test? After all, how many 2-year-olds suffer from erectile dysfunction? So we tried for another online diagnosis. This time, bleeding gums. Once again, it made no difference what we answered, until the question, "Does the patient take aspirin?" Once the answer is "No," it asks about splenomegaly or systemic rash. If the answer is again "No," the system queries for an abnormal dental exam or normal dental exam. With a normal dental exam, it says to check vitamin C levels. Diagnoses are "Injury with toothbrush, early scurvy, or phenytoin use." Hmm...those latter two are pretty serious. Maybe the diagnostics should have considered our answer to the question of symptom duration 2 days.

Who are the doctors diagnosing online? We're not sure. The four names followed by MDs have no credentials attached. One name is fairly common and shows up on the American Board of Medical Specialties Web site and CD-ROM. Whether any of those listings identify this author, we don't know. None of the other three show, and none have a match in California, where CCS originates.

Legality is another question. Even if they are certified physicians, they most certainly are not licensed to practice medicine in every state of the union. There are no disclaimers on the site, saying that this is just a tool to assist other physicians. There are no statements telling consumers to check with their own physicians.

Even scarier is the number of links to the Library, the number of other sites citing this one. According to a link search on Google, about 540 pages link to http://www.ccspublishing.com. More than 630 link specifically to http://www.medical-library.org, including even misguided libraries publishing lists of "notable sites for medical research."

Before you pay the $9.95 for your very own subscription, here's a gift. Just use "member" as the userid, and "1881" as your password. That's the instruction to those who forget their logon id and password. It's also the one given to me when I shelled out the subscription fee. Apparently, there is no such thing as a password protect, and anyone who knows the secret word can get in, $9.95 or not.

Are these folks charlatans? Well, maybe. Classically, charlatans are voluble, making loud claims about their own skill or knowledge. Here, the claims to skill and knowledge are implied, rather than touted, in the mere fact that the site purports to diagnose every manner of illness. Quack, perhaps? Well, again, we don't know the actual credentials behind the site. But the site definitely related to one of those classic village personages. The site is certainly treading a fine line and may be practicing medicine without a license by diagnosing across state lines.

The best thing to do when confronted with something like this is to run the other way. Find other sources that do give you the appropriate disclaimers and direct you to your own physician for accurate diagnoses. If you can't track down the source of the information, you have no idea of its quality. Dr. Wood and Dr. Chan may be excellent physicians, but you are given no way to check. The information is outdated, with an outright lie as to the date of the Continuing Medical Education journal articles. Sources are withheld or so old as to be laughable. The grammar is pitiful. Run away. Fast.
 

For One Thin Dime, One Tenth of a Dollar
Next in our village gallery are the true mountebanks folks who sell their own nostrums to cure what ails you. There are many false cures out there. Often, they're tied into promotions for books and videos about conspiracies among the medical establishment, who, of course, strive to keep these cures from the general public. Titles of these videos are designed to shock: Emerging AIDS & Ebola; Nature, Accident, or Intentional? and The Nazi-American Biomedical/Biowarfare Connection10 are just two examples. The site which carried these boasted more than 107,000 visitors from October 19, 1999, to October 18, 2000. Whether most of the 107,000 believed the tales is questionable, but it's likely that many followed links from similar sites, in an effort to find out "THE TRUTH."

While most people will see through these rants, there is a subtle insidiousness to cures using everyday household items. Take, for instance, the seemingly harmless hydrogen peroxide. H2O2 is ubiquitous. Most households have a bottle of a 3 percent solution of H2O2tucked away somewhere. It's the substance that made "bleached blondes" a household phrase and is well known for its use in cleaning cuts and abrasions. But despite its innocuous place in our homes, the Occupational Safety & Health Administration has a health guideline for hydrogen peroxide that warns how it can irritate the eyes, mucous membranes, and skin, and that inhalation may cause extreme respiratory irritation. In large enough doses, systemic poisoning may occur, resulting in vomiting, diarrhea, tremors, convulsions, pulmonary edema, or shock. During in vitro human tests, hydrogen peroxide has caused DNA damage. Acute exposure may cause mild bronchitis or pulmonary edema and corneal ulceration11.

Clearly, anything more than a 3-5 percent solution of this substance is a chemical to be reckoned with; even at low levels, one should think twice about ingesting it, much less contemplating an intravenous solution. Yet intravenous hydrogen peroxide therapy is precisely what is recommended by a number of Web sites. At Ozone Services[http://www.o3zone.com, accessed October 26, 2000], H2O2 therapy is described:

Hydrogen peroxide is infused into the circulatory system through a vein in the arm...in the blood it encounters two enzymes: catalase and cytochrome-C.... In this way the benefits of hydrogen peroxide are made available to all cells...the effect of singlet oxygen in the human body is two-fold. It kills, or severely inhibits the growth of, anaerobic organisms (bacteria and viruses which use carbon dioxide for fuel and leave oxygen as a by-product).... anaerobic bacteria are pathogens, the organisms which cause disease. All viruses are anaerobic.

These identical words appear in a paper by Ron Kennedy, MD, at Medical Library.net12. Both sites offer lists of physicians who conduct this therapy. True to form, another site claims there is a conspiracy to keep knowledge of H2O2 therapy out of the hands of the public, so the pharmaceutical companies and physicians can reap the benefit of trillions of dollars of drug sales13. Most disturbing is that these sites promoting oxygenation therapy make it sound as if the nasty adverse effects are merely proof that the therapy is working.

One woman experienced sudden severe nose bleeding with the elimination of two large blood clots from her right nostril. She can now breath through the nostril for the first time in years! Another person had bleeding from the mouth when he spit up huge amounts of mucous. Another had rectal bleeding as his hemorrhoids reduced. These are natural cleansing processes, and they will be of short duration as you continue the program.... There are hundreds of published articles against the use of hydrogen peroxide as a therapeutic agent because this cleansing process was misinterpreted as being "BAD." It is the necessary price for recovery of your precious health. Don't be misled by a "Healing Crisis!!" Rather, be GRATEFUL FOR IT!14

Yet if you look more closely on the Web, you can find the facts about H2O2 therapy.

One of the main proponents of H2O2 IV therapy is Kurt Donsbach, a chiropractor originally licensed in Montana, who then used a forged document to obtain a license to practice naturopathy in Oregon. Donsbach is now in Rosarita Beach, Baja Mexico, using "Bio-Oxidative Therapy" with a claimed remission rate of 70 percent in more than 300 patients who have "tried everything else" and been told their cases were hopeless15. What the proponents of bio-oxidative therapy don't tell you is that Donsbach is not a doctor. At one time he pleaded guilty to practicing medicine without a license in California, and since then has left a trail of misrepresentations and illegal medicinal claims. His Hospital Santa Monica uses hydrogen peroxide intravenously, orally, in ear drops, a nasal spray, a tooth gel, a pain gel, breath drops, and enemas for the purpose of "aging rejuvenation, allergies, arthritis, cancer, cardiovascular, cataracts, immune stimulation, and multiple sclerosis."16 In 1988, the U.S. Postal Service issued a cease and desist order to Donsbach, to stop him from claiming that hydrogen peroxide is fit for human consumption.17

In 1989, the Food and Drug Administration issued a press release that industrial strength hydrogen peroxide, illegally promoted to treat AIDS and cancer, had caused at least one death in Texas and several more serious injuries. Although the 35 percent solutions were sold to be diluted and used in "Hyper-Oxygenation Therapy," there was no proof that either the product or the therapy had any medicinal value. To quote the FDA press release, "Buyers are being cheated and subjected to significant risks and family members are being injured."18

These sites get an impressively high number of hits. Unlike our little village of olden days, where the mountebank gets run out of town once he's unmasked, in our global village the sites keep springing up. Anyone with a computer and a telephone line can create a professional-looking Web site, and anyone who questions the validity of the information can hear from proponents all over the world. From January 1999 to October 2000, the site carrying the Kennedy paper received over 3 million hits. And on America Online, the subject of H2O2 infusion therapy has been a topic of discussion on message boards, with only those who confirm its positive effects answering queries19. Even Dr. Weil at DrWeil.com has been questioned about its efficacy. Fortunately, Dr Weil's measured response is a good antidote to the hype. As he put it, 

One of the reasons people take antioxidant vitamins and minerals is to prevent the oxidative damage caused by chemicals such as hydrogen peroxide and ozone. You can't have it both ways here hydrogen peroxide and ozone can't both promote healing and be so toxic...save it for the next time you have a yen to go blond20.
 

Doctor? Who Needs a Doctor?
Speaking of message boards, it's time to make a stop at the village well, as townsfolk stop and chat about their concerns. Today, our village well consists of the communities, message boards, and chat rooms on several highly frequented networks. In a 1-month period, America Online garners almost 80 million unique visitors; About: The Human Internet has more than 20 million, and iVillage.com almost 8 million21. What these three networks offer are communities wherein people chat about their lives and concerns. Just like at the well, bad information can be as prevalent as good.

According to a study at Johns Hopkins School of Public Health, vaccines are one of the reasons behind the dramatic 50 percent increase in Americans' life expectancies over the course of the 20th century22. You wouldn't know it if you relied on Internet chat rooms for your information. An AOL message board search for "vaccination OR immunization OR vaccines" resulted in 1,158 hits in just 1 month. Here's a sampling of the messages: "the unofficial policy of the World Health Organization and...Save the Children's Fund and...[other vaccine-promoting] organizations is one of murder and genocide...," "just get in touch with a certified homeopath and stop going to doctors," "I guess the drug companies wanted a big increase in U.S. sales of the hepatitis B vaccine, because all of a sudden the CDC started hyping the disease as a huge health threat." The messages on iVillage ran in a similar vein, with messages which link to sites like BiologicalManipulation of Human Populations, using quotes from the 1955 Surgeon General that "No batch of vaccine can be proved safe before it is given to children,"23 and to the personal homepage of a D. K. Yuryev, proudly proclaiming that his paper was rejected by Nature, Lancet, International Immunology, and the New York Academy of Science, and therefore he is publishing it on the Web. In the introduction he states that "I'm afraid, this article too obviously implies an idea that vaccinology and AIDS campaign are governed by idiots...."24 The sites promoted and quoted by the anti-vaccine crowd are highly inbred, with each having lists of links to similar sites which link to each other.

Following the trails begun with these messages, the health searcher is led to articles like "Vaccines: The Truth Revealed" [http://www.odomnet.com/vaccines/introduc.htm, accessed October 17, 2000]. Here, we are told that the government has a computer database containing several thousand names of disabled and dead babies who were alive just prior to receiving vaccines. In actuality, there is a Vaccine Adverse Event Reporting System (VAERS), operated by the Centers for Disease Control and Prevention (CDC) in conjunction with the Food & Drug Administration (FDA) [http://www.fda.gov/cber/vaers/what.htm, accessed December 29, 2000]. Approximately 10,000-12,000 VAERS reports are filed annually, with about 15 percent classified as serious, i.e., seizure, high fever, life-threatening illness, or death. Any adverse event which occurs after a vaccination may be reportable, whether or not the event is related to the actual vaccine. More than 10 million vaccinations are given each year. Doing the math, this means that less than 0.1 percent (that's point one percent) of all vaccinations result in a VAERS report, and less than 0.02 percent (point oh two percent) are classified as serious.

One of the sadder aspects of these popular message boards is that the very same systems that allow bad information to go unchallenged in their communities also make available excellent, mediated information. On the About.com system, a retired pharmacologist is the "Guide" to Pharmacology. At Pharmacology.about.com, an 11-page, well-written, balanced view of vaccine safety is available [http://pharmacology.about.com/health/pharmacology/library/weekly/bl000217.htm, accessed October 25, 2000]. The article ends with links to resources like the parent pamphlets required to be given to vaccine recipients, the VAER system, the FDA, and the World Health Organization. All the information in the article is sourced. It's just like in our representative village. The people at the well turn to each other for support, with the highly vocal anti-establishment responding. Meanwhile, those in a position to offer facts are ignored.
 

You'll Need a Prescription for That
Stepping away from the village, for a moment, we ride into the city of London. Early in the history of the British Royal College of Physicians, its members asked Her Majesty Queen Elizabeth to command that "arsenic, sublimate, and opium should be sold to only those persons willing to give their names, and that no apothecary should sell or prescribe medicine without a physician's prescription."25 This battle is still being fought, only now the scale is multiplied a thousandfold. Most of us with any kind of activity on the Web have become used to receiving e-mails promising anonymous prescriptions to lifestyle drugs. Maybe Viagra for erectile dysfunction; perhaps Propecia for hair loss.

Ostensibly, these sites have physicians just waiting to "approve" you for purchase of the drug. Of course, every one which I've checked requires you to acknowledge that you're not taking any medications that might react with the drug in question and promise to have a physical examination prior to consuming the pharmaceutical26. In fact, the agreement in at least one of these has the prospective buyer agreeing, "I further certify and affirm that I am aware of and know of the potentially lethal side effects of Propecia, if I have ingested or taken other medications that are contraindicated with use of Propecia. I certify truthfully that I have not been taking any such medications." Nowhere on the site, however, are these contraindicated medications listed! In the Frequently Asked Questions, the only contraindications are women and children, and anyone allergic to any of the ingredients. Again, nowhere on the site are the ingredients listed. What about the question of whether the "prescribing physician" is properly licensed? To get around that question, the buyer must certify, "I agree that all on-line medical consultations, diagnoses, and treatments (including prescriptions for the treatment of hair loss) will be deemed to have occurred in the state where the physician is physically located and licensed to practice medicine."27

There is some hope that these sites will feel the brush of the law. While buyer agreements may work in most states, Pennsylvania has barred two of these companies from selling any prescriptions at all to citizens of Pennsylvania. As of November 2, 2000, both sites must prominently post that these services are not available to residents of Pennsylvania, and if you've previously purchased from them, the consultation fee may be refunded until March 200128. These kinds of sites are under constant investigation by the Food and Drug Administration. Unfortunately, there is no reason to believe that they will stop, or even slow down. A month after receiving an e-mail invitation to purchase Viagra, I checked and found the site no longer there, but in the interim I received several additional invitations. As long as there are townspeople vain enough to circumvent the law in order to grow hair, or unsure enough of their own virility to bypass a physical in favor of quick access to miracle cures, the unscrupulous apothecaries will continue to have their way.

If you think you're immune by virtue of never, ever going to a Web site under your own name, you're not. Published hard copy alumni directories have become fodder for scam mill. Shortly after my alma mater published a directory, I received an e-mail with the subject line: Albany Alumni. It was spam, selling something called "Crystal Vision," with the "most powerful antioxidants for macular health as well as nutrients that promote healthy functioning eyes." There was an illegible signature, over the tagline "Your Alumni Friend." Of course the return address was a nonsense word. Oh yes...if I ordered immediately, I would receive a free bottle of Echinacea.
 

One Last Villager
So all the village members are still here: the charlatans who sell their own nostrums, the physicians ("leeches") who provide the truth, the apothecaries who fill prescriptions (both legitimate ones and those who are not) and the "old wives" who sit at the well and mind your business for you. And, there's one more role to be played. Frankly, there are also village idiots in enough numbers to make the scams worthwhile.
 
 

Susan Detwiler is President of The Detwiler Group [http://www.detwiler.com] and author of Super Searchers on Health & Medicine: The Online Secrets of Top Health & Medical Researchers, a recent title in Information Today, Inc.'s SuperSearchers series.  Her e-mail address is sdetwiler@detwiler.com.


Footnotes

1 InfoTech Trends, Data Analysis Group, 2Q99.

2 "The Online Healthcare Revolution: How the Web Helps Americans Take Better Care of Themselves,"The Pew Internet & American Life Project [http://www.pewinternet.org/], released November 26, 2000.

3 USDA Report to Congress on the Dairy Promotion Programs 2000 [http://www.ams.usda.gov/dairy/prb_intro.htm ].

4 National Dairy Promotion and Research Program, USDA Web site [http://www.ams.usda.gov/dairy/ndb.htm].

5 Barr, S.I., et al., "Effects of Increased Consumption of Fluid Milk on Energy and Nutrient Intake, Body Weight, and Cardiovascular Risk Factors in Healthy Older Adults," Journal of the American Dietetic Association, 2000; 100:810-817.

6 "Using the Dietary Guidelines for Americans,"accessed at http://www.usda.gov/cnpp/Pubs/DG2000/Index.htm on November 27, 2000.

7 Carrns, A., "Doctors' Web Site Gets Sponsorship from Nestle," The Wall Street Journal, October 27, 2000.

8 Knowledge@wharton, CNET news.com, "The FDA Hunts Snake-Oil Salesmen Through Cyberspace."October 30, 2000.

9 Based on "Avoiding the Charlatans,"© 2000-2001, Susan Detwiler. Unpublished presentation to St. Luke's Episcopal Hospital. December 14, 2000.

10 Tetrahedron Incorporated [http://wwwtetrahedron.org], accessed on October 18, 2000.

11 Occupational Safety & Health Administration, U.S. Department of Labor, Technical Links > Health Guidelines > Hydrogen Peroxide [http://www.osha-slc.gov/SLTC/healthguidelines/hydrogenperoxide/recognition.html], accessed December 26, 2000.

12 Kennedy, R., Intravenous Hydrogen Peroxide Therapy. http://www.medical-library.net/sites/_iv_hydrogen_peroxide_therapy.html accessed October 26, 2000.

13 Ozone...Does It Work?. http://www.cat007.com/o2.htm accessed November 2, 2000.

14 Oxygen Therapy H2O2 Hydrogen Peroxide Therapy. H2O2, HydrogenPeroxide.com [http://h2o2hydrogenperoxide.com/alt.html], accessed October 23, 2000.

15 OxyFile #9. Oxygen and Ozone Therapies [http://www.oxytherapy.com/oxyfiles/oxy00009.html], accessed December 27, 2000.

16 Barrett, S., The Unhealthy Alliance. American Council on Science and Health Special Report, 1988 [http://www.hcrc.org/contrib/acsh/booklets/unhlthy.html], accessed October 23, 2000.

17 Hydrogen Peroxide (H2O2) Unconventional Cancer Therapies. BC Cancer Agency [http://bccancer.bc.ca/uct/hydrogenperoxide-h2o2.shtml], accessed November 2, 2000.

18 "Industrial Strength Hydrogen Peroxide," release provided by the Food and Drug Administration [http://www.fda.gov/bbs/topics/NEWS/NEW00122.html], accessed October 23, 2000.

19 Re: Hydrogen Peroxide Infusion Therapy. Message id <20000925224952.04878.00000777@ng-ci1.aol.com, accessed October 24, 2000.

20 Hydrogen Peroxide, Ozone, and Oxygen Therapy. Ask Dr. Weil [http://www.pathfinder.com/drweil/archiveqa/0,2283,91,00.html], accessed October 23, 2000.

21 Media Metrix Top 50 US Web & Digital Media Properties for September 2000. Media Metrix [http://www.mediametrix.com/], accessed November 1, 2000.

22 "American Life Span Jumped Dramatically in 20th Century," Reuters Health, December 5, 2000.

23 "Biological Manipulation of Human Populations," Leading Edge International Research Group [http://www.trufax.org/menu/bio.html], accessed October 18, 2000.

24 D.K. Yuryev's home page, Toward Understanding of Vaccines [http://www.orc.ru/~yur77/toward.htm].

25 Lord Moran, "On Credulity," The Lancet, January 23, 1954.

26 Order Viagra Online [http://www.1-orders-prescriptions-online.com], accessed December 29, 2000; CyberHealthServices [http://www.cyberhealthservices.com], accessed December 29, 2000.

27 Kwikmed.com [http://kwikmed.com/cgi-bin/pg.cgi?affid=121960&pg=propecia-order.html], accessed December 29, 2000.

28 "Online Prescription Drug Business Barred in Penn," PR Newswire via COMTEX via Hoover's [http://hmt.hoovers.com/digests/pharm/2000/11/02/online.html], accessed November 2, 2000.
 

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