The Most Astonishing Health Disaster of the 20th Century
Archive for April, 2008
This is an interesting article by researchers about how the media conditions people to expect disease, by using scaremongering tactics. The media got a lot of mileage out of bird flu, and each year they stir up the masses about the latest “deadly” flu epidemic, in this article it’s restless leg syndrome.
Giving Legs to Restless Legs: A Case Study of How the Media Helps Make People Sick
Citation: Woloshin S, Schwartz LM (2006) Giving Legs to Restless Legs: A Case Study of How the Media Helps Make People Sick. PLoS Med 3(4): e170 doi:10.1371/journal.pmed.0030170
Published: April 11, 2006
Abbreviation: FDA, Food and Drug Administration
* To whom correspondence should be addressed. E-mail: steven.woloshin@dartmouth.edu.
These authors contributed equally to this work.
Steven Woloshin and Lisa M. Schwartz are at the Veterans Affairs Outcomes Group, White River Junction, Vermont, United States of America, and the Center for the Evaluative Clinical Sciences, Dartmouth Medical School, Hanover, New Hampshire, United States of America.
“[Restless legs syndrome] is quite a serious sleep disorder that affects a lot of people….Their sleep is disturbed and, unless they are really awake, they will not be aware of it” [1].
Life can be hard. Sometimes you feel sad or distracted or anxious. Or maybe you feel a compelling urge to move your legs. But does that mean you are sick? Does it mean you need medication?
Maybe, maybe not. For some people, symptoms are severe enough to be disabling. But for many others with milder problems, these “symptoms” are just the transient experiences of everyday life. Helping sick people get treatment is a good thing. Convincing healthy people that they are sick is not. Sick people stand to benefit from treatment, but healthy people may only get hurt: they get labeled “sick,” may become anxious about their condition, and, if they are treated, may experience side effects that overwhelm any potential benefit.
“Disease mongering” is the effort by pharmaceutical companies (or others with similar financial interests) to enlarge the market for a treatment by convincing people that they are sick and need medical intervention [2]. Typically, the disease is vague, with nonspecific symptoms spanning a broad spectrum of severity—from everyday experiences many people would not even call “symptoms,” to profound suffering. The market for treatment gets enlarged in two ways: by narrowing the definition of health so normal experiences get labeled as pathologic, and by expanding the definition of disease to include earlier, milder, and presymptomatic forms (e.g., regarding a risk factor such as high cholesterol as a disease in itself).
What Is Restless Legs Syndrome?
The diagnosis of restless legs syndrome requires the presence of the following four criteria [4]:
* An urge to move the legs due to an unpleasant feeling in the legs.
* Onset or worsening of symptoms when at rest or not moving around frequently.
* Partial or complete relief by movement (e.g., walking) for as long as the movement continues.
* Symptoms that occur primarily at night and that can interfere with sleep or rest.
The severity of disease is judged by the frequency of these symptoms, which can range from less than once a month to many times a day. Recommended treatments include stretching exercises and less caffeine for intermittent disease and various prescription drugs (e.g., benzodiazepines and dopamine agonists) for daily symptoms [5].
Discussions about disease mongering usually focus on the role of pharmaceutical companies—how they promote disease and their products through “disease awareness” campaigns and direct-to-consumer drug advertising, and by funding disease advocacy groups. But diseases also get promoted in another way: through the news media. News reports are a major source of health information for people [3]. Unless journalists approach stories about new diseases skeptically and look out for disease mongering by the pharmaceutical industry, pharmaceutical consultants, and advocacy groups, journalists, too, may end up selling sickness.
The Case of Restless Legs Syndrome
To get a sense of how the media works in the context of a major disease promotion effort, we examined news coverage of “restless legs” (see sidebar). In 2003, GlaxoSmithKline launched a campaign to promote awareness about restless legs syndrome, beginning with press releases about presentations at the American Academy of Neurology meeting describing the early trial results of using ropinirole (a drug previously approved for Parkinson disease) for the treatment of restless legs [6,7]. Two months later, GlaxoSmithKline issued a new press release entitled “New survey reveals common yet under recognized disorder—restless legs syndrome—is keeping Americans awake at night” about an internally funded and, at the time, unpublished study [8]. In 2005, the US Food and Drug Administration (FDA) approved ropinirole for the treatment of restless legs syndrome (the first drug approved specifically for this indication). Since then, the restless legs campaign has developed into a multimillion dollar international effort to “push restless legs syndrome into the consciousness of doctors and consumers alike” [9].
Newspaper Coverage of the Restless Legs Syndrome
To identify media coverage related to this campaign over two years (November 2003–November 2005), we did full-text searches of “major newspapers” in Lexis-Nexis and ProQuest databases and found 187 unique articles with the phrase “restless legs.” We excluded articles not about the syndrome (e.g., “Elvis’s restless legs”), nonnews stories (e.g., health advice columns, notices of restless legs health screenings/support groups), and articles with only passing mention of restless legs (most of these were about sleep disorders, another “new yet largely unrecognized problem”). We analyzed the remaining 33 articles (all focused on restless legs syndrome) using an explicit coding scheme organized around the key elements of disease mongering, as outlined in the first column of Table 1: exaggerating the prevalence of the disease (e.g., uncritically accepting a broad prevalence estimate), encouraging more diagnosis (e.g., doctors fail to recognize it), and suggesting that all disease should be treated (e.g., overstating the benefits or minimizing the harms of treatment).
Table 1. Key Elements of Disease Mongering and How the Media Could Do Better
Exaggerating Disease Prevalence
Figure 1 shows that the news articles often included elements exaggerating disease prevalence. Only one article questioned the disease definition at all (and portrayed the act of questioning the definition as insensitive: “[the patient] knows it can sound trivial. That’s one of the problems with restless legs. Radio show host Rush Limbaugh, for example, has mocked it as a pseudoillness” [10]).
Figure 1. Frequency of Key Elements of Disease Mongering in Newspaper Articles
Top bar graph analyzes all articles about restless legs syndrome. Bottom bar graph analyzes the subset that mentions ropinirole
Almost two-thirds of articles provided an estimate of disease prevalence (most commonly, statements such as “at least 12 million Americans suffer from the syndrome” [11] or “[it] affects 1 in 10 adults in the United States” [12]). No article questioned the validity of the prevalence estimates. In fact, there are reasons to believe the estimates overstate the prevalence of clinically meaningful disease. For example, the frequently cited 10% estimate came from a study that used a single question to identify restless legs syndrome rather than the four standard criteria [13]. The less stringent definition inflates the estimate because people with other causes of leg symptoms (e.g., leg cramps or diabetic neuropathy) are counted incorrectly as having the syndrome.
In a recent large study, only 7% of respondents reported all four diagnostic criteria, and only 2.7% reported moderately or severely distressing symptoms two or more times per week (i.e., the group for whom medical treatment might be appropriate) [14]. Even the 2.7% estimate is probably too high, because of bias inherent in the study sample. The authors claimed an implausible 98% response rate to their random-digit dial survey (typical response rates are 50%–70% [15]). Most likely, the authors meant that 98% of individuals who agreed to participate completed the survey. But respondents agreeing to participate in a restless legs study are more likely to have leg-related symptoms than nonrespondents.
Nearly three-quarters of newspaper articles highlighted the potentially serious physical, social, and emotional consequences of restless legs: “…the condition sounds like a joke, but its consequences can be devastating. Driven to despair by years of sleepless nights, patients have become suicidal” [16]). While over 40% of the articles provided anecdotes about people with severe disease, no article provided anecdotes about people who did not find their symptoms especially bothersome.
Encourage More Diagnosis
The articles also reinforced the need for more diagnosis. About half reported that the syndrome is underdiagnosed by physicians (“…relatively few doctors know about restless legs. This is the most common disorder your doctor has never heard of” [17]) and underrecognized by patients (“…many people can suffer in silence for years before it is recognized” [18]). One-quarter of articles encouraged patient self-diagnosis and suggested people ask their doctor whether restless legs might explain various problems (including insomnia, daytime fatigue, attention deficit disorder in children, and depression). One-fifth of articles referred readers to the “nonprofit” Restless Legs Foundation for further information; none reported that the foundation is heavily subsidized by GlaxoSmithKline. No article acknowledged the possibility of overdiagnosis (the idea that some people will be diagnosed unnecessarily and take medication they do not really need).
Suggest That All Disease Should Be Treated
About half the news stories mentioned the drug ropinirole by name. Only one story quantified the drug’s benefit. By contrast, about half the stories mentioning ropinirole included anecdotes about patients who took the drug (and in most cases noted substantial improvement). One-third of articles used “miracle language” to describe patient response to medication (e.g., “it has been a miracle drug for me” [19]). The actual benefit of the drug is modest. The drug label reports that in a 12-week US clinical trial, restless legs symptom scores (measured on a 40-point scale) improved by 13.5 points for patients taking ropinirole compared with 9.8 points for those taking placebo [20]. In more clinical terms, 73% taking ropinirole responded to the drug (i.e., restless legs scores improved by six points) compared with 57% taking placebo.
The drug label [20] also notes that ropinirole has a number of side effects, including nausea (40% in ropinirole group versus 8% in placebo group) and dizziness (11% versus 5%, respectively). Somnolence and fatigue (ostensibly, the real target of the drug) were also higher in the ropinirole versus the placebo group (12% versus 6%; 8% versus 4%, respectively). Nonetheless, only five of the 15 articles mentioning ropinirole noted that it could have side effects and just one quantified the chance of any side effect (“nausea was the most common side effect, reported in 38% of patients” [18]). Finally, only one news story noted that the ropinirole trials were “relatively short” in duration (the longest was 36 weeks), despite the fact that many people would use the drug for years or even a lifetime.
Suggestions for How the Media Could Do Better
Unfortunately, there is no obvious way to distinguish information from infomercial. In Table 1, we highlight clues that should alert journalists to the presence of disease mongering, and suggest some things they can do to expose these efforts.
First, journalists should be very wary when confronted with a new or expanded disease affecting large numbers of people. If a disease is common and very bothersome, it is hard to believe that no one would have noticed it before. Prevalence estimates are easy to exaggerate by broadening the definition of disease. Journalists need to ask exactly how the disease is being defined, whether the diagnostic criteria were used appropriately, and whether the study sample truly represents the general population (e.g., patients at an insomnia clinic cannot be taken to represent the general public).
Journalists should also reflexively question whether more diagnosis is always a good thing. Simply labeling people with disease has negative consequences [21]. Similarly, journalists should question the assumption that treatment always makes sense. Medical treatments always involve trade-offs; people with mild symptoms have little to gain, and treatment may end up causing more harm than good.
Finally, instead of extreme, unrepresentative anecdotes about miracle cures, journalists should help readers understand how well the treatment works (e.g., what is the chance that I will feel better if I take the medicine versus if I do not?) and what problems it might cause (e.g., whether I might be trading less restless legs for daytime nausea, dizziness, and somnolence).
Conclusion
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. Although our review was limited to the coverage of a single disease promotion campaign, we think it is likely that our findings would apply to others. It is easy to understand why the media would be attracted to disease promotion stories and why they would be covered uncritically. 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.
Acknowledgments
We would like to thank Elliott Fisher and Brenda Sirovich for helpful comments on earlier drafts.
1. Revill J (2004 September 19) Restless legs keep 6m awake. The Observer. Available: http://observer.guardian.co.uk/uk_news/story/0,,1307797,00.html. Accessed 2 March 2006.
2. Moynihan R, Cassels A (2005) Selling sickness. How the world’s biggest pharmaceutical companies are turning us all into patients. New York: Nation Books. 254 p.
3. Kaiser Family Foundation. (2005) Kaiser health poll report: Public opinion snapshot on health information sources—July 2005. Menlo Park (California): Kaiser Family Foundation. Available: http://www.kff.org/kaiserpolls/pomr071805oth.cfm. Accessed 2 March 2006.
4. Reuters (2005 May 6) Glaxo drug for restless legs syndrome is approved. The New York Times; Sect C: 3.
5. Silber M, Ehrenberg B, Allen R, Buchfuhrer M, Earley C, et al. (2004) An algorithm for the management of restless legs syndrome. Mayo Clin Proc 79:916–922. Find this article online
6. GlaxoSmithKline. (2003 April 1) Restless legs syndrome can significantly impair quality of life. Research Triangle Park (North Carolina): GlaxoSmithKline. Available: http://www.gsk.com/ControllerServlet?appId=4&pageId=402&newsid=175. Accessed 7 March 2006.
7. GlaxoSmithKline. (2003 March 31) Study shows Requip® (ropinirole HCl) improves symptoms of Restless legs syndrome. Research Triangle Park (North Carolina): GlaxoSmithKline. Available: http://www.gsk.com/ControllerServlet?appId=4&pageId=402&newsid=71. Accessed 7 March 2006.
8. GlaxoSmithKline. (2003 June 10) New survey reveals common yet under recognized disorder—Restless legs syndrome—is keeping America awake at night. Research Triangle Park (North Carolina): GlaxoSmithKline. Available: http://gsk.com/press_archive/press2003/press_06102003.htm. Accessed 7 March 2006.
9. Rundle RL (2005) Motion sickness: Restless legs syndrome has long been misdiagnosed and misunderstood; that’s about to change. The Wall Street Journal; Sect R: 5.
10. Lerner M (2005) Respect, relief for restless legs; pill helps relieve pain and exhaustion for those who suffer from syndrome. Star Tribune, Metro ed; Sect B: 1.
11. O’Connor A (2004 May 25) Restless legs; uncomfortable and overlooked. The New York Times. Available: http://www.nytimes.com/2004/05/25/health/25legs.html?ex=1141448400&en=2bf6d431bc7f2b69&ei=5070. Accessed 2 March 2006.
12. Rackl L (2005 May 23) Drug to calm sleep-robbing leg syndrome okayed by FDA; uncontrollable urge to move limbs affects 1 in 10, runs in families. Chicago Sun-Times. Available: http://www.zoeticzone.com/p/articles/mi_qn4155/is_20050523/ai_n14648506. Accessed 2 March 2006.
13. Phillips B, Young T, Finn L, Asher K, Hening WA, et al. (2000) Epidemiology of restless legs symptoms in adults. Arch Intern Med 160:2137–2141. Find this article online
14. Allen R, Walters A, Montplaisir J, Hening W, Myers A, et al. (2005) Restless legs syndrome prevalence and impact: REST general population study. Arch Intern Med 165:1286–1292. Find this article online
15. Groves R, Fowler F, Couper M, Lepkowski J, Singer E, et al. (2004) Survey methodology. Hoboken (New Jersey): John Wiley and Sons. 448 p.
16. Lantin B (2004 December 1) No sleep for those with restless legs. The Daily Telegraph. Available: http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2004/01/12/hrest12.xml.
17. O’Neill P (2004) Restless legs treatments under study in Oregon. The Oregonian; Sect B: 1.
18. Cresswell A (2005) Relief at hand for restless legs. The Weekend Australian; Sect C: 29.
19. Fiely D (2005) Restless legs syndrome; ads for drug raise awareness of annoying condition. The Columbus Dispatch. Home Final Edition ed; Sect G: 1.
20. GlaxoSmithKline. (2005) Requip® (ropinirole hydrochloride)—Prescribing information. Research Triangle Park (North Carolina): GlaxoSmithKline. Available: http://www.fda.gov/cder/foi/label/2005/020658s013lbl.pdf. Accessed 2 March 2006.
21. Haynes R, Sackett D, Taylor D, Gibson E, Johnson A (1978) Increased absenteeism from work after detection and labeling of hypertensive patients. N Engl J Med 299:741–744.
Emotional Freedom Techniques (EFT)
(try one or more of the links below)
Based on impressive new discoveries involving the body’s subtle energies, Emotional Freedom Techniques (EFT) has been clinically effective in thousands of cases for Trauma & Abuse, Stress & Anxiety, Fears & Phobias, Depression, Addictive Cravings, Children’s Issues and hundreds of physical symptoms including headaches, body pains and breathing difficulties. Properly applied, over 80% achieve either noticeable improvement or complete cessation of the problem.
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The amount of sleep each person needs depends on many factors, including age. Infants generally require about 16 hours a day, while teenagers need about 9 hours on average. For most adults, 7 to 8 hours a night appears to be the best amount of sleep, although some people may need as few as 5 hours or as many as 10 hours of sleep each day. Women in the first 3 months of pregnancy often need several more hours of sleep than usual. The amount of sleep a person needs also increases if he or she has been deprived of sleep in previous days. Getting too little sleep creates a “sleep debt,” which is much like being overdrawn at a bank. Eventually, your body will demand that the debt be repaid. We don’t seem to adapt to getting less sleep than we need; while we may get used to a sleep-depriving schedule, our judgment, reaction time, and other functions are still impaired.
People tend to sleep more lightly and for shorter time spans as they get older, although they generally need about the same amount of sleep as they needed in early adulthood. About half of all people over 65 have frequent sleeping problems, such as insomnia, and deep sleep stages in many elderly people often become very short or stop completely. This change may be a normal part of aging, or it may result from medical problems that are common in elderly people and from the medications and other treatments for those problems.
Experts say that if you feel drowsy during the day, even during boring activities, you haven’t had enough sleep. If you routinely fall asleep within 5 minutes of lying down, you probably have severe sleep deprivation, possibly even a sleep disorder. Microsleeps, or very brief episodes of sleep in an otherwise awake person, are another mark of sleep deprivation. In many cases, people are not aware that they are experiencing microsleeps. The widespread practice of “burning the candle at both ends” in western industrialized societies has created so much sleep deprivation that what is really abnormal sleepiness is now almost the norm.
Many studies make it clear that sleep deprivation is dangerous. Sleep-deprived people who are tested by using a driving simulator or by performing a hand-eye coordination task perform as badly as or worse than those who are intoxicated. Sleep deprivation also magnifies alcohol’s effects on the body, so a fatigued person who drinks will become much more impaired than someone who is well-rested. Driver fatigue is responsible for an estimated 100,000 motor vehicle accidents and 1500 deaths each year, according to the National Highway Traffic Safety Administration. Since drowsiness is the brain’s last step before falling asleep, driving while drowsy can – and often does – lead to disaster. Caffeine and other stimulants cannot overcome the effects of severe sleep deprivation. The National Sleep Foundation says that if you have trouble keeping your eyes focused, if you can’t stop yawning, or if you can’t remember driving the last few miles, you are probably too drowsy to drive safely.
There are a number of obvious causes for snoring which need to be worked on or eliminated such as, colds, allergies, obesity, alcohol, smoking, sedatives and increasing age, unfortunately not much can be done about the latter.
If you don’t have any of the above and you still keep the household awake with your snoring , then perhaps you should sleep on your stomach, or your side. Sleeping on one’s back has always been considered to trigger snoring, in someone who is predisposed to snore. Fixing a tennis ball into your sleeping gear, between your shoulder blades, near the neck will train you to keep off your back.
Try a saline nasal spray before bed, or mix a very small amount of salt, 1/8 of a teaspoon into some warm water and suck it up into the nostrils and let it wash out of the mouth, then blow your nose.
A study found that kids who did 40 minutes of aerobic exercise each day showed a significant drop in their snoring and breathing problems. If it worked for kids, then why wouldn’t it work for adults.
Another study involved the use of singing exercises as a non invasive method used to treat chronic snorers. The snorers practiced their singing exercises for 20 minutes a day over a period of 3 months. Snoring was much improved in those subjects who performed the exercises regularly and accurately.
Elevate the head of your bed 10 to 15 cm using bricks. Make sure that your last meal at night is a light one, heavy meals may increase breathing problems. Add an extra pillow, or use nasal strips which will keep the nostrils open and prevent snoring, or use both.
Aromatherapy oils such as eucalyptus, or rosemary added to a burner on placed on a tissue near your pillow may make breathing easier.
If all of the above measures fail to improve your snoring, then as a last resort a CPAP mask might be the answer.