YouTube videos can inaccurately depict Parkinson’s disease and other movement disorders

EurekAlert, Public release date: 21-Sep-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.

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.

The full text can be found at:
http://www.nejm.org/doi/pdf/10.1056/NEJMc1107673

The authors are quite right to point out that you have to be very careful about what you find on the web (and that includes this post). But, with great humility, let me point out that we also have to be careful about what we read in the NEJM.

It seems that the group of experts independently viewed the videos and independently made a diagnosis. These were highly correlated. Fair enough. BUT, it seems to me to be a great leap of faith to assume that where the experts disagreed with the patients (and their own doctors), they (the experts) were correct.

A better methodology would be for a second group of doctors to examine the patients normally.

However, I think use could be made of this approach: we put ourselves on You Tube and wait for a passing expert to offer a diagnosis.

John

…”neurologists found that the people in the videos often do not have a movement disorder”…
…, 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….’’

That’s what two neuros told me about the YouTube video of my little speech, posted by Heeseung Ko. They said “You didn’t even look like you had Parkinson’s at all.” They said it as a compliment, as encouragement, saying that despite the recent extreme difficulty I am having with out-of-control fluctuations, I was nonetheless able to talk for 5 minutes while “On”. If I had been “Off”, you would have not even been able to understand what I said, and I would have been shaken out of the chair and curled up on the floor.
So one of these days I will check out the videos they are talking about – made by people who are pretending to have Parkinson’, but they are just acting, like MJ Fox did to that “Rush” character. Fox was pretending, remember? Or, if they are selling something, it may be a scam, snake-oil, a false cure, in which case someone should be assigned to alert the FDA.
But how did these neuros diagnose by watching 3 minute videos? Are there really lots of people pretending to have PD? And going on You Tube to convince the world they have a major disease but they don’t?

I keep thinking of the admonishments to stop reading all those internet sites from physicians. Yes, I know there are lots of inaccuracies out there. Yes I know there is much to be known about science and interpreting what is available requires skill and education. Yes I know the arcane language used in professions function to keep outsiders from learning the secrets of the profession, thus preserving the purity and guarding against others invading the tribal like communities.

Realized last evening the reason I enjoyed Ann Patchett's book, "Bel Canto" was the situation in which all the characters were placed equalized them; no one was better than another based upon education or societal standings. one's true character was the elevating element. as another aside, her newest book "State of Wonder" concerns dealings of a pharmaceutical company. This is not the major theme (a heroic journey to self discovery is the theme), though most of the characters work for a pharmaceutical company.

headline says "Parkinson's fakes on YouTube" - people pretending to have PD...
http://www.nejm.org/doi/pdf/10.1056/NEJMc1107673

Then it says:

we searched YouTube in January 2011 and selected videos
from the top 3% of the most often viewed videos in each category that were uploaded by patients
and were of sufficient quality. Movement
disorders by their nature can be seen and
evaluated without special examination techniques.
We asked the raters to base their judgments on
published diagnostic criteria for psychogenic
movement disorders that are related to aspects
of the movement disorder apparent on simple
observation.

And then near the end, they have a table of stats that appears to say there are 30,000 spastic videos on YouTube, (!!!!) of which 10,200 show Parkinson's, (!!!) of which they looked at two, but then one disappeared on YouTube and so they evaluated ONE YouTube about Parkinson;s and just by watching it on screen, declared it to be a fake.

I repeat, we have here a headline that has gone to PWP around the world, from scientists, and it is based on viewing one video on a computer screen, without ever meeting the patient or the patient's doctor or family. (if I understood the article correctly)

Maybe I do not understand the science here, but my impression is that it is not PWP faking evidence: the headline is fake, the method of diagnosis of Parkinson's is fake and the science involved is fake. You watch ONE video of a PWP on your laptop, claim that you can diagnose PD at a glance and then send it out to the world?

Rhetorical question: am I crazy, or is the world of PD research crazy?

You must beware what is on the internet; but it seems you must also beware of the Ph'd who can make a sweeping statement based on one video, claiming that PD is a disease they can identify at a glance, and they are scientists so we should accept what they say.
Did I misunderstand the science? This makes no sense to me as science. A sample size of one video and anybody can identify PWP a mile away.

Bob et al, I too just looked at this 'study' which turns out to be a letter to the editor, rather than a formal study, and noted the huge numbers from which they could choose, even given that they used only the top 3%. I could see no real reason for PD to be singled out for any headline on this as only 2 cases of parkinsonism were considered, of which one was not evaluated because it had been taken down. If all science was conducted on this basis then it would not be YouTube being considered for snake oil stuff, it would be science itself!

However, even the way that the top 3% of the most popular videos on Youtube are determined is statistically questionable. It is just the ones that have been viewed most..... Where is the evidence for those videos having been chosen for authenticity, rather than a spectator sport? Or for seriousness? Or genuine claims of illness? None. So the whole thing falls down. And that is without the fact that the authors of this letter are choosing to pick X amount out of 3% of thousands. How do they arrive at X? What made them choose the two videos of 'parkinsonism' or the many more of 'tremor'? It is all very subjective, and should not be used as a blanket means to discredit all internet sources. It is just YouTube....... by it's nature amateur for the most part. And a spectator arena.

The fact is that most patients who are sentient enough to look at these things are able to come to their own conclusions, and if they have a movement disorder will have some scepticism about what they view. There are some people who will have a desperate hope that there is something out there that will help them, and will try anything. There should be compassion about this not criticism. Many people looking for solutions to health problems with that level of desperation have been failed by modern medicine....

I would also hold that people out there with conversion disorders that lead them to make videos of 'movement disorders' they believe that they have are also worthy of compassion; mental health disorders are as real as physical conditions.

I would have been more impressed if these doctors had been able to identify these peoples real disorders. It is easy to discount someone having something, and as many of us know, much much harder to diagnose what people are really suffering from.

Yes we need to have caution when viewing the internet, but I yet have to meet anyone who self diagnosed a condition from YouTube! For any condition!