[ConcernedWriter]

I'm a newspaper journalist in Arizona. In the two years since I wrote about a local woman who suffers from what she believes to be some form of skin parasite, I have heard from dozens of people from across the country who read her story and recognized the exact same symptoms and experiences they have also suffered. I have listened, and continue to listen to these folks, and I try to help them in any way I can. I believe they do in fact suffer from a real physical disease that is not currently recognized by the medical profession. Unfortunately I have learned nothing substantial about the cause of this disease or the likely cure. But what I have learned is that the way most sufferers are going about seeking help from the medical community is actually hurting their chances of being taken seriously. Also, many are falling victim to unscrupulous purveyors of phony tests and treatments. Unfortunately, many of the Web sites and organizations created to help these people are actually contributing to the problem. So when people call or e-mail me, this is what I tell them -- the only thing I have truly learned about this issue that I feel I can enlighten people about. I'll simplify it into a list of do's and don'ts:

DO NOT think of skin parasite Web sites and those who post on them as authorities on the problem.

DO NOT try every folk cure for skin parasites you find on the Web.

DO NOT pay someone on the Web money to provide you with "the test" or "the cure."

DO NOT walk into your doctor's office with a skin sample or any type of sample. Apparently somewhere in the medical textbooks there is a chapter that says anyone who brings in their own sample is delusional.

DO NOT tell your doctor your theory about what is wrong with you.

DO NOT recommend or demand a particular treatment for yourself.

DO NOT try to prove to your doctor that you have a skin parasite.

DO NOT quote information from the Web to your doctor.

DO NOT pay money to a homeopathic or naturopathic doctor who just happens to know EXACTLY what's wrong with you and how to cure it.

DO talk to your real medical doctor about your EXISTING SYMPTOMS. Tell them how you feel, and show them any lesions, discolorations or other abnormalities. BUT DON'T TELL THEM YOUR THEORY ABOUT THE CAUSE. That's a sure-fire way to be dismissed as a delusory parasitosis case.

DO be persistent about going back to your doctor if the prescribed treatment doesn't work.

DO NOT give up hope! Others have recovered from this, and there is a good chance you will, too.


AND HERE IS A SPECIAL SECTION FOR THE PEOPLE SERVING AS REPRESENTATIVES OR SUPPORTERS OF THE SKIN PARASITE SUFFERERS' COMMUNITY:

DO NOT promote your personal theory about what is causing the disease. YOU ARE SETTING THESE POOR SUFFERERS UP FOR FAILURE WHEN THEY SEEK MEDICAL HELP. You are biasing and possibly misleading these people, and for what? How is your theory helping any one of them?

DO NOT host message boards that are nothing more than vehicles for the indiscriminate proliferation of theories and folk cures. Get your members to focus on sharing feelings, experiences, coping mechanisms and advice on how to approach the medical community effectively. BE A SUPPORT GROUP, NOT A HALF-BAKED MEDICAL STUDY.

DO NOT promote or allow anyone on your site to promote homeopaths, naturopaths, acupuncturists, hypnotists, psychics, witch doctors or anyone else.

DO NOT allow people to promote any supposed “cure” that could harm someone, such as bathing in bleach, ingesting large quantities of metals or overloading on antibiotics. The tendency of skin parasite groups to delve into this type of medical pseudoscience is largely responsible for the established medical community’s continued skepticism toward the disease itself. MORE IMPORTANTLY, SOMEONE COULD GET VERY SICK OR EVEN KILLED.

DO NOT bicker with leaders of other skin parasite groups over conflicting theories. YOU ARE DIVIDING A COMMUNITY THAT MUST STAND UNITED IF IT IS TO GAIN CREDIBILITY WITH REAL MEDICAL RESEARCHERS.

DO collect OBJECTIVE information such as name, address, phone number, symptoms and medical histories of each sufferer who contacts you or your Web site.

DO compile this information in a consistent, unbiased and scientific manner in preparation for submitting it to the medical community for review.

DO work together with organizers of other support groups and Web sites in this common effort. It's heartening to know that the CDC is looking into this, but we don't yet know whether it will result in the official recognition of this disease. Now is a sensitive time in which many in the scientific community are forming their first impressions about the disease and its reported sufferers.

DO THINK STRATEGICALLY ABOUT HOW TO GET CREDIBLE RESEARCH ORGANIZATIONS SUCH AS THE CDC TO CONTINUE CONDUCTING LEGITIMATE RESEARCH AND SEE IT THROUGH TO CONCLUSION. BASHING THEM, PREACHING TO THEM, CRITICIZING THEM FOR NOT RESPECTING YOUR THEORY -- ALL OF THE ABOVE WILL DOOM SUFFERERS TO PERPETUAL MISERY.