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Science News

YouTube Videos May Not Accurately Depict Movement Disorders Such As Parkinsonís

As the third-most-visited web site on the Internet, YouTube has become an important source of information and entertainment for millions of people.  Yet when people use the online video site to learn about movement disorders, they may be misled, according to a letter to the editor in the September 22 issue of The New England Journal of Medicine.

Many people use YouTube to share and discuss personal medical issues.  Some people who believe that they have a movement disorder, such as Parkinson’s disease, dystonia, or tremor, post videos of themselves that demonstrate their symptoms.  When Kailash Bhatia, M.D., at University College London and his colleagues learned from their patients that such videos often propose diagnoses and therapies, they wondered about the accuracy of this information.

So they asked seven experienced neurologists to independently evaluate the most popular YouTube videos featuring individuals purported to have a movement disorder.  The researchers found the videos by searching YouTube with the keywords “dystonia,” “Parkinson’s,” “chorea,” myoclonus,” “tics,” and tremor.”  The neurologists found over 30,000 videos using these keywords and over 10,000 for Parkinsonism alone.  The neurologists narrowed this down by selecting and watching only the most frequently viewed (top three percent) videos of each category and judged whether the patients exhibited genuine symptoms of a movement disorder, or whether the symptoms were more typical of a psychogenic disorder.  People with psychogenic disorders suffer abnormal movements caused by psychological, rather than physical, factors.  Psychogenic movement disorders are probably much rarer than Parkinson's and their treatment is obviously much different, as a team of neurologists and psychiatrists is required.

Results:

  • Of 29 videos showing people with movement disorders, the neurologists rated 66 percent as psychogenic and 34 percent as the correctly diagnosed disorder.
  • The neurologists agreed with each other in 89 percent of the cases.
  • In over half (53 percent) of the videos showing psychogenic movement disorders, viewers offered advice on specific treatments in the comments section.
  • Suggested treatments included herbal remedies, massage, immunosuppressive agents, and invasive or expensive diagnostic tests.

What Does It Mean?

For a person who fears that either he or she or a loved one has a movement disorder, the Internet can be their first source of information about the suspected disorder.  However, the majority of videos on YouTube that show symptoms of alleged movement disorders actually depict people with psychogenic conditions.  Therefore, a viewer with similar symptoms may erroneously conclude that they have a movement disorder, which could interfere with their proper diagnosis and treatment.

In addition, people who post videos on YouTube seeking advice about their condition and treatment may receive false information from viewers who comment on the video.  This study suggests that people should be extremely wary of the unreliable information about movement disorders on web sites such as YouTube.

PDF recommends that a person with symptoms resembling those of PD consider making an appointment with a movement disorder specialist.  To find one in your area, where available, contact PDF’s HelpLine by calling (800) 457-6676 from 9 AM to 5 PM ET, Monday through Friday, or by emailing info@pdf.org.  Additionally, PDF's own YouTube channel does contain a shortened version of its educational DVD, Diagnosis Parkinson's Disease: You are not alone, featuring testimony by real people with Parkinson's and reviewed by medical experts.

Watch PDF's Video

Reference: 1. Stamelou M, Edwards MJ, Espay AJ, et al. Movement disorders on YouTube--Caveat Spectator. N Engl J Med. 2011;365(12):1160–1161.

Source Date: Oct 14 2011