Now that there are commercials on TV to promote the suffering of people with FM, there also are new websites cropping up to take advantage of you. Opportunists and marketing companies are eager to cash in on your efforts to feel better or to aid research on your disease with websites that scam money or extract personal information from you that may be used to badger you with their worthless “bogus” cures.

FM researcher Daniel Clauw, M.D., of the University of Michigan says, “There is a dark side to FM becoming ‘popular.’”

For example, here are two websites to avoid:

www . fibrofighters . com — This site has all of the appearances of looking legitimate with your best interests at heart. However, on every page it asks for donations and yet they do not say “who” they are. In addition, they claim that 75 percent of all donations will be used to fund research by giving 25 percent to each of the following organizations:

• American Fibromyalgia Syndrome Association (AFSA)
• National Fibromyalgia Research Association (NFRA)
• Fibromyalgia Research Foundation (FRF)

While AFSA is a legitimate nonprofit organization whose primary mission is to fund fibromyalgia research, the folks at fibrofighters cannot legally collect donations on AFSA’s behalf, especially since they have never contacted AFSA! The same problem holds true for the other organizations. Fibrofighters is a for-profit entity that cannot even legally collect tax-deductible donations, nor have they ever handed over any such donations to AFSA. This company (which does not give any information about itself) appears to be simply pocketing donations from well-meaning patients.

www . FibroIsReal . com — This site claims to be recruiting patients for a clinical trial of an investigational drug for fibromyalgia. Yet, the site does not state who they are, and even if you call the phone number listed, they will not tell you the sponsoring drug company or the drug being tested. All they want to do is collect information on you, such as your name, address, phone number, e-mail address, date of birth, whether you have been diagnosed with FM, other medical conditions you might have, and what medications you are taking. Should you ask them to tell you if a trial is being offered in your area, they will decline to answer until you fill out all the pre-screening information. The design of the site looks tacky, and they do not post a privacy policy regarding the information you give them. Chances are, the information is being collected for the purposes of selling your information to marketing agencies and companies who want to sell you their bogus cures.

If you are interested in learning about clinical trial opportunities in your area, just visit the two reputable websites listed below. Use “refine search” to select your state or country.

www.ClinicalTrials.gov — you may even click on your state or region to find those studies that are closest to you.

www.CenterWatch.com — you may even sign up for e-mail alerts from this website so they will notify you if a new clinical trial opens up in your area (all you need to provide it your e-mail address).

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