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Summer 2000
How to Evaluate
a
CFIDS/FM Treatment
By Lisa
Lorden
While there is currently no cure
for chronic fatigue and immune dysfunction syndrome (CFIDS) or fibromyalgia (FM), there are many treatments
for the symptoms of these illnesses. Many of us feel as if we have tried them all. This willingness to
try anything in the hope of gaining relief can actually be dangerous, leading some of us to explore unproven
remedies and gimmicks.
Individuals with CFIDS or FM need to be discriminating when choosing a treatment.
What works for someone else may not work for you. If there were one “magic” or “harmless” cure, everyone
would have used it by now.
Here are some tips to help you decide whether a treatment is worthwhile
for you and to assist you in avoiding quack cures.
Expect some proof
Look
for treatments that have
some scientific evidence of effectiveness, such as those backed by clinical research trials. Testimonials
from patients who have been “cured” are not legitimate proof.
Do your homework
Research
therapies you are
considering as much as you can. Good places to go for information are large on-line resource centers and
back issues of The CFIDS Chronicle. Always consult with your health care providers before beginning
new treatments.
Be critical about marketing
Beware of remedies that are promoted
through multi-level marketing, tabloid articles or mail-order offers. Also avoid remedies described as
“secret formula,” “exclusive” or “special.” Legitimate scientists do not keep their findings secret or
exclusive.
Beware of promises and
claims
Be suspicious
of ads for treatments that claim to have no side effects. Also beware of claims that the product can completely
relieve pain, eradicate all symptoms, take effect the first time you use it or give you unlimited energy.
Talk to fellow PWCs
Visit
support groups or
on-line discussion groups to find out about other people’s experiences with a particular therapy. You
can contact The CFIDS Association of America for a list of support groups in your area. My site,
http://chronicfatigue.about.com, offers a listing of support groups and a chat area.
Keep records
If
you do decide to try something
new, keep a record of your symptoms before and throughout treatment so that you can track any changes.
Improvement may be subtle and difficult to recognize otherwise.
Give it time
Give
the therapy a six-week trial;
if you don’t experience any significant benefit in that time period, discontinue it. Do stop the treatment
earlier if you begin to experience serious side effects (another reason to inform your physician in advance,
so that he or she can help you determine when/if it is time to stop).
Lisa Lorden has been
suffering from CFIDS and fibromyalgia
since 1995. She serves as a CFS/fibromyalgia resource guide on About.com (http://chronicfatigue.about.com).
WHAT TO DO IF YOU FALL FOR FALSE CLAIMS
If you fall into the trap of
trying a treatment that does not
meet up to marketing claims or causes unmentioned side effects, you can report the company to the proper
federal agencies.
If the product you buy claims to be a drug, the Food and Drug Administration
(FDA) can stop the sale of any drug that has not been FDA tested or approved, although it does not regulate
the sale of nutritional supplements. Call the FDA at 888/463-5332.
The Federal Trade Commission
can prohibit any individual or company from making false advertising claims for products developed to
treat any medical condition. You can call 877/FTC-HELP (877/382-4357) to report false advertising.
The
United States Post Office has the authority to seize all mail addressed to any promoter selling such a
product through the mail. Report health care product fraud schemes to your local postmaster---the
U.S. Postal Inspection Service provides a mail
fraud report form on its web site.
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