Movement Disorders on YouTube Not What They Seem, Experts
WEDNESDAY, Sept. 21 (HealthDay News) -- Most depictions of
movement disorders on the popular video-sharing website YouTube are
not what they claim to be, warn a group of neurologists who
Two-thirds of 29 videos on YouTube showing people with movement
disorders such as Parkinson's disease, dystonia and tremors were
deemed to be "psychogenic," meaning those on camera were suffering
instead from a psychological ailment that showed up in abnormal
body movements, according to a letter published in the Sept. 22
issue of the
New England Journal of Medicine.
"For patients with a movement disorder, the information available on YouTube may be misleading and may provide an inaccurate impression of the disorder and its treatment," stated the letter, which was written by eight international physicians.
"The fact that such a large number of videos showing psychogenic movement disorders are available on the Internet highlights an underlying problem that affects virtually every medical specialty, and the information these videos provide can interfere with the effective recognition and care of patients with a movement disorder," the physicians added.
The doctors' group -- comprised of clinicians from the United
States, United Kingdom, Canada, Australia and the Netherlands --
asked seven neurologists who are experts in movement disorders to
independently evaluate the most-watched YouTube videos of patients
purported to have such a disorder and to judge whether it appeared
to be psychogenic or "organic" (having a physical cause).
Noting that movement disorders, which produce unwanted and/or
spastic movements of various body parts, easily lend themselves
toward video demonstration, the letter said only 34 percent of the
videos were deemed organic.
Dr. Michael Pourfar, director of the Movement Disorders Center
at the Cushing Neuroscience Institute, part of the North Shore-LIJ
Health System in Great Neck, N.Y., said the letter brings to light
something doctors often experience: patients seeing or viewing
health information online and not knowing how to validate it.
"You don't know what you're getting," said Pourfar, "so I think it's a cautionary tale. A lot of things can be going on. They're not necessarily faking it. They may have some kind of psychiatric problem.
"It's hard to know what's going on in the mind of someone who would do that," Pourfar continued. "Some do it to get attention, or maybe it's distracting them from something else in their life."
The danger, of course, is that those erroneously depicting
movement disorders provide inaccurate impressions of the condition,
which can mislead viewers about its true symptoms. Some also touted
unsubstantiated cures or remedies for the disorders that they
apparently believed had helped them.
For example, one video described as showing facial dystonia -- a
syndrome of spasms or sustained muscle contractions -- recorded
spasms that appeared to be triggered by an electrical stimulator,
the letter said. The video suggested dystonia could be alleviated
if patients wore cotton clothes and avoided radiation.
Other recommendations that might prove more serious, the
physicians' letter noted, included those proposing invasive
diagnostic tests or the use of agents that suppress the immune
system, or those claiming "profound benefits" from herbal remedies
or craniosacral massage from healthcare providers.
"The take-home message of the paper -- no big surprise -- is that you can't trust or rely on everything you see on the Internet," said Dr. John Duda, an assistant professor of neurology at the Perelman School of Medicine at the University of Pennsylvania.
Duda noted that between 2 percent and 10 percent of movement
disorders are actually psychogenic, compared with the 66 percent
psychogenic ratio apparent in the YouTube videos.
"Obviously, the Internet is a powerful tool," he said. But, "if a patient thinks they have a movement disorder, they should see a neurologist. The treatments that some people report to be useful in some of these disorders are, in some cases, quackery and should be avoided."
For more information on movement disorders, visit
Movement Disorder Society.
Copyright © 2011
. All rights reserved.
Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.