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NBC apparently doesn’t understand disease-mongering

by Gary Schwitzer

First of all, let me be clear that nothing I’m about to write questions the discomfort that some people have from a condition that’s been called restless leg syndrome or RLS. But I continue to question some news coverage of the condition. And for the second time I’m questioning the quality and quantity of attention NBC is giving to this disorder, which Dartmouth’s Steve Woloshin has called “the poster child for disease-mongering.”

In a story that seemed aimed defensively at earlier criticism (some of it by me and some on Brian Williams’ own blog) of an earlier NBC story about ads for a restless leg syndrome drug, NBC tonight devoted a full package to a story that probably didn’t warrant the air time. Brian Williams said, in his introduction: “If you’ve ever been skeptical about restless leg syndrome, there’s something you should know.” But the story never delivered that “something you should know.” The story was about two papers in the New England Journal of Medicine this week, linking a common gene variation with RLS. But, as Dartmouth’s Woloshin wrote to the Associated Press, the new research doesn’t pin down exactly what the condition is, how many people have it with what levels of severity, or what medication – if any - is needed. And NBC’s story didn’t explain those points either.

But Brian Williams promised, “now new science is giving skeptics new reason to take this condition seriously.” Sorry, Brian, your story didn’t do that for me.

Then NBC chief medical editor Dr. Nancy Snyderman said, “two new studies out today may quiet the critics.” That’s missing the point. Don’t paint this as a story about unfeeling, unsympathetic people questioning how much people are in discomfort. Critics aren’t questioning the existence of some restless leg symptoms in some people. They’re questioning the prevalence estimates and generalizations about the severity of symptoms across those prevalence estimates – which is what Snyderman went on to get wrong once again. She said that RLS “affects up to 20 million Americans and many are undiagnosed.” She said “those with RLS experience intense sensations.” That is classic disease-mongering. She stated an exaggerated prevalence without giving any basis for that number. And she made it sound like all of the 20-million have intense symptoms. Where is the evidence for that?

The story then included the dramatic angle of an 18 year old girl who might have the genetic variation. Interestingly, both NBC and the Associated Press used the same patient examples – women from Covington, Georgia. Since the principal investigator in one of the studies is from Atlanta, it certainly looks like he cherry-picked some prime patient examples for this national news exposure. If, as Snyderman suggests, there are 20-million Americans with this condition, why did two national news organizations have to use the exact same two patients? Couldn’t they have found someone different at almost any street corner? Is this independent fact-finding? Or is someone accepting a public relations spoonfeeding?

Snyderman concluded by saying, “The next step for researchers will be to figure out how to use this gene to diagnose and treat people even earlier.” This statement, too, represents classic disease-mongering. Who says they all need treatment?

Dartmouth’s Woloshin told the Associated Press that “the best evidence puts the U.S. prevalence of restless legs at under 3 percent, less than common estimates of 10 percent.” Why didn’t that show up in the NBC report? There are legitimate controversies here. Don’t paint evidence-based observers as the bogeyman.

Before people with legitimate restless leg syndrome symptoms start writing in, remember that I’m questioning the quality of the news coverage. I’m not questioning the validity of your symptoms. As Woloshin pointed out in a scholarly review of news coverage in PLOS Medicine:

“The news coverage of restless legs syndrome is disturbing. It exaggerated the prevalence of disease and the need for treatment, and failed to consider the problems of overdiagnosis. In essence, the media seemed to have been co-opted into the disease-mongering process. … The stories are full of drama: a huge but unrecognized public health crisis, compelling personal anecdotes, uncaring or ignorant doctors, and miracle cures.

The problem lies in presenting just one side of the story. There may be no public health crisis, the compelling stories may not represent the typical experience of people with the condition, the doctors may be wise not to invoke a new diagnosis for vague symptoms that may have a more plausible explanation, the cures are far from miraculous, and healthy people may be getting hurt.

We think the media could report medical news without reinforcing disease promotion efforts by approaching stories like “restless legs” with a greater degree of skepticism. After all, their job is to inform readers, not to make them sick.”


5 Comments »

  Katherine Johnson wrote @ July 19th, 2007 at 12:29 am

I have been a sufferer of RLS associated with PLMD. It has been truly devistating. My symptoms have become quite severe over the past year. Many simply don’t understand just what effect it does have. And I have no doubt the disorder is genetic, as my mother has had symptoms for years, as have one of my sons. If they want to do a story, let it be more of the cause, which at this point is largely unknown. They are playing a guessing game, and to me that’s irresponsible journalism. The fact is, there aren’t many facts. Why needlessly arm people with vague information. It’s insulting.

  david rye wrote @ July 19th, 2007 at 2:49 am

How many cases of RLS have you seen? How many have you missed?….

No clue …right……? The frequency of the gentetic variant in US and ICeland is 65% where we estimate prevalence of 8-12%. In Asian (at least according to HAPMAP data—do you know what that is?)…..the frequency of the variant is 35% at most. Interestingly, the best data on prevalence in Asia of RLS are 2-4.3% dependent on age. WOW!—suprisingly the gene variant frequency and actual disease frequency correlate…..not coincidence. Science and the human genome do not function in mysterious manners…..but opinion does. Remember Hippocrates….”in, fact there are two things….science and opinion…the first begets knowledge….the latter ingorance.”

d

  Bobby Taylor wrote @ July 19th, 2007 at 12:05 pm

I totally agree with your opinions about NBC news. After all its about ratings i.e. money. They don’t care much about news. My wife is a physician and has had RLS for many years as did her mom. It is a big problem in that it takes away the resting/sleeping phase of one’s life and the effects carry over into the work day.

I hope someone will soon discover the cause and the cure for RLS. It is urgently needed. Where are you Candace Pert?

  elizabeth wrote @ July 19th, 2007 at 6:36 pm

i am a 52 year old female, registered nurse, who’s suffered with RLS since the age of 25. early on, my condition required no more than a hot bath to “settle down” my legs. it was an intermittant problem, maybe surfacing one evening every several weeks.

i didn’t know the name of the condition until it worsened, during my first pregnancy, at age 28. in researching my symtoms i came across the term RLS and learned that many people with pernicious anemia suffer with the condition. as my iron was low during the pregnancy, i tried supplements, and experienced minimal relief. once my son was delivered the symptoms stopped, overnight.

over the years, then, i’d have trouble on and off. my father has symptoms of RLS as do my 2 of my 4 sisters, and 2 of my 4 brothers.

lately, i’ve had worsening RLS to the point of being unable to fall asleep until 4 or 5 in the a.m. i’ve considered medication, but am reluctant to start something. for now, i continue on iron supplement as i think that is the root of my problem.

i was happy to see the news report about RLS. its encouraging to see, scientifically, that there is such a condition/syndrome. hopefully there will be more research and work devoted to finding out the cause, and for treatment.

  Ann wrote @ July 21st, 2007 at 8:13 pm

Whether the news coverage is well-done or not, I am glad to see some attention to this disorder. Why don’t these people with all the criticism of the coverage write something more complete and more well done? I’ll certainly read it. I’ve had RLS for 30 years, and PLMD for a good part of that time and observed it in my father and his father. It is infuriating to have to fight every night to do something so natural and so necessary. To the critics, “How long do you walk the planks each night?” Much more attention is needed in the study of sleep disorders. I was drowsy driving in the afternoon, which is what precipitated my effort to get some help.

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