For release: Wednesday, September 21, 2011
Looking online for medical information? Viewers beware, doctors caution. After reviewing the most frequently watched YouTube videos about movement disorders, a group of neurologists found that the people in the videos often do not have a movement disorder. As described in a Letter to the Editor in this week’s New England Journal of Medicine, such medical misinformation may confuse patients suffering from devastating neurological disorders and seeking health information and advice online.
Movement disorders such as essential tremor add difficulty to simple tasks, such as pouring water from one cup into another, as shown here. Credit: NINDS
Many people use the Internet as a primary resource for medical information, and YouTube, the third most visited website on the Internet, is a popular platform for patients to share personal medical stories and experiences on video.
Dozens of YouTube videos show people who believe they have movement disorders such as Parkinson’s disease demonstrating and talking about their symptoms. In January 2011, neurologists at University College London began a study when patients alerted them that online videos often proposed a diagnosis and suggested therapies.
Seven neurologists from different countries and medical institutions searched YouTube using six keywords: “dystonia,” “Parkinsonism,” “chorea,” “myoclonus,” “tics” and “tremor”, and found videos allegedly depicting various movement disorders. They then independently reviewed the top three percent most-watched videos that were of sufficient quality to review patient symptoms.
Out of 29 videos, the majority (66 percent) were identified as showing “psychogenic” movement disorders, meaning that the abnormal movement originates from a psychological condition or mental state rather than a disease with a physical cause, such as Parkinson’s. Of these videos, more than half contained advice about specific therapies to treat the movement disorder. Furthermore, the doctors reviewing the videos did so independently, yet their diagnoses agreed in 87 to 100 percent of all cases.
"Patients and doctors have to be very thoughtful and careful when looking for information on YouTube, as well as the Internet in general," commented Mark Hallett, M.D., senior investigator at the National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health. "There is a great deal of good information on the Internet, but one has to be careful."
Dr. Hallett was one of two U.S.-based investigators who reviewed and rated the videos, and co-authored the letter. The video review was initiated by neurologists Kailash P. Bhatia, M.D. (principal corresponding author), Maria Stamelou, M.D., Ph.D., and Mark J. Edwards. M.D., Ph.D. at University College London. The other video raters and co-authors were: Alberto J. Espay, M.D. (University of Cincinnati, Ohio), Victor S.C. Fung, Ph.D., F.R.A.C.P. (Sydney Medical School, Australia), Anthony E. Lang, M.D. (University of Toronto, Canada), and Marina A.J. Tijssen, M.D., Ph.D. (Academic Medical Center, Amsterdam, the Netherlands).
The National Institutes of Health provides peer-reviewed, research-based health information on its website at http://health.nih.gov/. Accurate information on movement disorders can be found at http://www.ninds.nih.gov/disorders/parkinsons_disease/parkinsons_disease.htm.
Reference: "Movement Disorders on YouTube — Caveat Spectator." New England Journal of Medicine, published online September 22, 2011, Volume 365, No. 12, pages 1160-1161.
Who: Mark Hallett, M.D., senior investigator at NINDS, is available to comment on this letter.
Contact: To schedule interviews, please contact Nicole Garbarini at NINDSPressTeam@ninds.nih.gov or call (301) 496-5751.
NINDS (www.ninds.nih.gov) is the nation’s leading funder of research on the brain and nervous system. The NINDS mission is to reduce the burden of neurological disease – a burden borne by every age group, by every segment of society, by people all over the world.
About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.
Last Modified March 21, 2016