CONSUMER ALERT: The Claims used for Marketing Fibromyalgia Products and Treatments


The Claims used for Marketing Fibromyalgia Products and Treatments

~from the Fibromyalgia Network

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 three FDA-approved drugs for fibromyalgia, which include Lyrica (pregabalin), Cymbalta (duloxetine) and Savella (milnacipran). None are approved for 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 objectivemeasures 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 Website (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 a past issue of our quarterly 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.”


With so many of these claims on the internet, its so good to have a way to cut through the mumbo jumbo. Thank you so much!

Rosie

This is excellent advice, Rachel. It's so hard to figure out what's real and what's bogus. I didn't know the extent that people would go to make their product look legit but you've sure covered many bases. I wish this article would be posted on the main page because it is THAT important.

Also, as another person here pointed out (Punkin or MBP, I believe,) these companies will also have false web pages posted that look very legit, telling you that medical studies have proven the product, etc. The pages might even look like they came from official sources.

The bottom line is, IF IT SOUNDS TOO GOOD TO BE TRUE, IT PROBABLY IS AND MAY SEND YOU INTO A TERRIBLE FLARE OR WORSE.

If products claim to cure you or to work on numerous different ailments, yet your doctor hasn't heard of them or recommended them, you have to wonder WHY? You could use the logic that your doctor doesn't yet know about it, but it would be in your best interest to discuss the product with you doctor before investing in something that is probably expensive, might be completely ineffective and also might make you very sick. I've read about this very thing happening to fibro sufferers on other web sites, so please be careful. It was not at all enjoyable reading about good people getting fleeced and being in terrible pain, thanks to an unproven product.

Thanks Rachel, this is good info. I have a well intentioned older friend who sends me these kind of 'miracle cures' all the time in the mail or in e-mail. I just thank him and go on! He believes that herbs can cure anything, and he may be right, but if I choose to go this route, I will return to the Oriental acupuncturist/master herbalist with training, or an accredited Holistic Physician where an exam takes place and info about my specific health is gathered and charted.

Wow, this is really good Rachel, thanks for sharing it !!

Ding ding ding! I’m glad that there are other people out there who can explain what I was trying to say. Or back up what I was saying Pet!!!

Luvs
Punkin

SK, I had one guy try to get me to try this stuff one time and blah blah blah, they are Sooo pushy! My deal is if they feel like a used car salesman then its too good to be true.

However, I do feel that in some instances that a natural diet and a raw diet can help with somethings. As I’ve said with my sister n law before and her cancer. Before being taught how to live an organic, natural fiber, and raw foods can “heal” you because she was having weekly transfusions and after going to Mexico for three mo with only the clothes on her back and her Passport and ID and putting what she learned into practice she hasn’t had a blood transfusion in 4 years I believe. And its been six since she was diagnosed. So in some instances it does work.

Hugz
Punkin

I agree Punkin! Pushy and too good to be true should ring the bell!

Immune deficient can easily be boosted with natural, organic, and raw foods, I don't think it hurts anyone, as long as they get the needed vit/min and protein. As a matter of fact this may be easier than having an immune system in hyper over-drive, like with autoimmune, other than the biologic immunosuppressants, and anti-inflammatory, I don't really know what you can do for it!

Mexico and Europe have some interesting treatments for the big C, one involves heating the body. Same theory as they are using now with kids with fevers, unless the fever is extremely high, they tell you not to try to break it, as the fever is the body's natural response.

Consider how many times we were given meds for fevers in our lives... so many things seem to link to this predisposition.

So glad that your sister is doing well, hope she has beat it!

A friend of mine just beat lung cancer with gene therapy, she was lucky enough to have this rare gene present in her body, and a Superstar at Johns Hopkins told her Doctor how to treat her. She is doing very well, no sign of it!

Also, once these miracle cures get your credit card number, they will continue to charge your account monthly and send the product to you, bet you play hell trying to stop the charges!

I just want to remind people to PLEASE PLEASE check with your doctor before taking a supplement or herbal treatment because even supplements and herbs can interact with your medication. Make sure this is something that you can safely take and that your doctor thinks will help you out. I know it's a pain but it's better then flaring or having a bad reaction.

What is cold laser? Thanks