The Restless Legs Syndrome Controversy: Funny Name, Serious Topic
Most people who watched TV a few years ago found themselves in one of two camps regarding the restless legs syndrome (RLS) publicity. Either they suffered the weird symptoms described in the ads and felt a jolt of recognition, or they wondered if someone was playing a joke on an overmedicated country.
Here was a list of funny-sounding symptoms, a new prescription drug, yet no diagnostic test to document the condition's existence. RLS joined a growing family of disorders (including fibromyalgia and attention deficit hyperactivity disorder) that are in debate, while patients fight to be taken seriously.
Thrust into the spotlight
Contrary to popular belief, RLS is not a 21st-century invention. The term restless legs was first used medically in 1945, though the condition has been described in literature dating back to 1672.
It was the pharmaceutical industry that gave RLS national attention in 2003, however, with a press release about a "common yet under recognized disorder" keeping Americans awake at night. Although the campaign didn't discuss medication options (none were currently on the market for RLS), it set the stage for what was to follow.
In 2005 the FDA approved Requip, a dopamine agonist used to treat Parkinson's disease, for the treatment of moderate to severe RLS. Mirapex, a similar drug, followed in 2006.
With new drug approvals came a flurry of direct-to-consumer advertising. News outlets began covering RLS and its new treatment options. Even the nonprofit RLS Foundation received a substantial financial boost from Mirapex and Requip's parent companies.
Campaign backlash—and skeptics who aren't convinced
The epidemic of RLS propaganda has had a negative effect on many people, however, who assume the condition is merely an excuse to sell drugs and an enabler for hypochondriacs.
It's been spoofed in comedy skits, ridiculed by talk show hosts, and questioned by consumers and scientists alike. Even Consumer Reports, in a 2007 Internet video, mocked and questioned the claims in an RLS drug ad.
In 2006 two Dartmouth College scientists published an article speaking out against RLS coverage, claiming that the disorder's prevalence, and the need for drug treatment, is often exaggerated.
The researchers note that one frequently cited statistic—that RLS affects 10% of the adult population—came from a pharma-sponsored phone survey that asked only one diagnostic question instead of the required four criteria. Other studies have found the prevalence of RLS to be as low as 7% of the population, with only about 3% having severe enough cases to warrant drug treatment.
"There's a whole spectrum of cases," explains coauthor Steven Woloshin, MD. "We know there are some people who really suffer from RLS, and we don't make light of that. But there are also people who can control their symptoms with lifestyle changes. Inflating the prevalence of the condition and the benefits of these drugs does a disservice to everyone."
A double-edged sword
Charlene Gamaldo, MD, assistant professor of neurology at Johns Hopkins Hospital in Baltimore, finds both pros and cons in the media frenzy. "Doctors are more aware of the condition, and patients who really do have RLS are reassured that it's not just in their head—there are others like them and treatment options out there."
"But RLS is a tricky diagnosis," she adds. "We have to really talk to our patients and elicit all the symptoms before we should even discuss treatment. If a patient walks in and says they must have RLS, and the appointment is only five minutes long, the doctor may not do a thorough job and could make an inaccurate diagnosis, and prescribe medications that may come with side effects."
Donna McLellan, 52, of Brattleboro, Vt., has suffered from severe RLS for almost four decades. She moderates an online RLS support group and often discusses her frustration with other members.
"We were definitely excited when the FDA approved a drug; finally the condition was legit and people would take us seriously," she says. "But a lot of us have been disappointed in the ads and the way they've been portrayed. When people make RLS into a big joke, it makes us think that we're the only ones who will ever truly understand."