Consumer Alerts
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Apply the approaches outlined below so that you can easily see through the veil of deceptive tactics and misleading claims used for many products and therapies targeting fibromyalgia and chronic fatigue syndrome patients.
- Patient Testimonials. Consumer responses (i.e., patient testimonials) are okay as long as they are not the only evidence of the product’s effectiveness. Realize that there is no way to validate the content of the testimonials, so the manufacturer is free to write what they want consumers to read.
- FDA-Approved. Just because a product is FDA-approved, do not assume that it pertains to treating any of the key symptoms of fibromyalgia (the product could be FDA-approved for anything, unless the manufacturer clearly specifies this information). Currently, there are no FDA-approved agents for fibromyalgia or chronic fatigue syndrome.
- Clinically Proven. This is by far the most common phrase used to deceive people. As a consumer, one would hope that "clinically proven" means that a placebo-controlled trial was conducted using a significant number of patients (not just a handful of 10-15), and that the results validate the claims being made for the product. One would also hope that objective measures were used to document the effectiveness of the product for fibromyalgia (not just asking patients if they feel better). The true test of whether something is clinically proven is if the results of the study were of high enough quality to be published in a medical journal. Therefore, a medical journal citation should go along with the words "clinically proven" to validate that this is truly the case.
- Medical Journal Citations. Although it is important for the results of a clinical trial on any given agent to be cited with a reference to a medical journal, beware that these citations can be deceptive. The promoters of miracle cures for fibromyalgia may list reputable citations that have absolutely nothing to do with the testing of their product, and they count on the consumer not to follow up on them. However, checking them is really quite easy. Just log onto the National Library of Medicine’s Web site (called PubMed). Then type in the author’s last name, the product name, or both. If there are no resulting studies, then you know the citation was bogus. If a reference does pull up, then read the summary abstract to make sure that it actually deals with the product, and that the results were as favorable as claimed. If not, then the manufacturer is counting on you not to read this summary.
- Scientific Mumbo-Jumbo. Scientific jargon may be used to wow or confuse fibromyalgia patients who are already battling cognitive dysfunction. Products that are designed for the average consumer should be explained in terms that they can understand. The use of technical terms is likely just a smokescreen to conceal the truth: the product has no scientific basis whatsoever.
- Money-Back Guarantee. Don’t give into statements such as: "We guarantee your satisfaction or your money back." Usually, the terms are only for 30 days, and this will not be enough time for the natural placebo effect to wear off. Anyone who spends money on a product with the hopes that it will rid them of a life-impairing condition, such as fibromyalgia, will probably suspect that it is doing some good at first—it is only human! But by the time you discover that the product is not working, it’s too late. You also have to be concerned with "fly-by-night" companies that are not around once you have made the discovery that their product is a dud.
- Conspiracy Theories. Promoters may try to convince fibromyalgia patients that their doctors don’t have time to learn about all of the great new remedies available for each condition. Or, maybe the manufacturer will take the stance that physicians only listen to the sales reps from big drug companies, so the reason you have not heard about this new product is because "Big Pharma" doesn’t want you to. Countering this notion that doctors are too busy to learn about new treatments, pain specialist Jennifer Schneider, M.D., Ph.D., of Tucson, AZ, says, "It’s just not true! Most doctors subscribe to journals on their medical specialty. Moreover, to renew your medical license, physicians need at least 20 hours of continuing medical education credits every year."
- The "Underdog" Excuses. If a product manufacturer does not have any clinical data to support their claims, they may use the excuse, "We are not a big drug company with deep pockets." That may be so, but if they have the money to market their product, then they have the money to test it. Research is costly, but not nearly as expensive as promoters of false cures would lead you to think ... at least not for one small scale study to help support their claims.
- Fibro in the Name. The attention-grabbing "Fibro" in a product’s name can be deceiving. The manufacturer may claim that it is specially formulated for fibromyalgia patients, but this is usually a ploy to get you to purchase the ingredients at a hiked-up price. Or, it may be used to imply that the product was designed with your medical symptoms in mind, making it appear more worthy of your consideration. In reality, "fibro" in a name is used as a marketing buzzword to draw in people with fibromyalgia.
Fibromyalgia Network asked three physicians about the marketing of miracle cures for an article in the January 2004 Journal. Statements made by John A. Flores, M.D., an internist and pain management specialist in Las Cruces, NM, help explain how some of the above tools can be put to use. "I never discount any treatment ... I have the patient write a letter to the vendor or company requesting clinical literature that supports their claims. More often than not, we never receive a response. Occasionally, we will receive legitimate literature describing current scientific medical opinion on fibromyalgia, but nothing more. For example, the literature may explain that serotonin deficiency is associated with fibromyalgia, and that correcting the deficiency may improve symptoms. The inference is that their product or treatment can accomplish this, and is superior to any other method. Of course, they never provide data supporting that inference. At this point, it becomes apparent that the company is not on the up and up, and we cease pursuing this line of treatment."
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