Date: January 2017
Authors: Mark Edwards, MD, Mark Hallett, MD, Susan Jeffrey, Executive Editor, Medscape Neurology
Editors: Susanne A. Schneider, MD, Michael S. Okun, MD, and Stella M. Papa, MD
The Internet serves as an incredible source of information. Almost any subject imaginable can be found on search engines. More recently, a plethora of social media tools have been developed and led to a change in our communication. We not only send text messages or use instant messenger with personal friends or family; in addition people tweet, post messages on blogs and upload videos in order to reach millions of people. Their implementations are seemingly boundless. These tools have transformed and morphed into the medical profession. On the one hand, patients find useful (and sometimes less useful) information on the Internet about their disease and treatments; on the other hand, we see patients upload private medical information onto the net sharing their stories with others. These two scenarios have positive and negatives associated with them.
We have invited two medical experts to discuss developments in psychogenic cases posted to the Internet: Professor Mark Hallett, Director of the Human Motor Control Section at the National Institute of Health in Bethesda, MD, USA, and Prof. Mark Edwards, Professor of Neurology at St. George’s University of London, Atkinson Morley Regional Neuroscience Centre, United Kingdom. We also invited a representative from Medscape Neurology, Executive Editor Susan Jeffrey, to comment. We invite you to comment and share your views as well.
What are some of the key issues and potential solutions regarding patients with functional (psychogenic) movement disorders posting videos to the Internet?
Dr. Edwards: It is often said that information is power. With regard to medical information there has generally been a shift in medical practice from a paternalistic: “take this tablet because I say so” approach to a collaborative approach based on informing the patient about their condition and providing choice about treatments (or indeed about having no treatment at all). Viewed in this context, the availability of medical information on the Internet seems like it must be a good thing, a driver of “patient power.” I think there are significant problems though. One is a simple ratio between the number of symptoms it is possible to have against the number of medical disorders that can cause symptoms. I don’t know the exact number but surely it must be many millions to one: there are relatively so few symptoms to the number of possible causes. This renders Internet lists of symptoms very unhelpful in self-diagnosis.
The second problem is that it seems as though many of the people who are seeking help have the kind of medical problems that are most poorly understood and most easy to misunderstand. Here I’m talking about people with functional movement disorders. In the research paper by Stamelou et al. the videos uploaded by people to YouTube were from people who had functional movement disorders. The comments uploaded by viewers of the paper included many inappropriate therapies and suggestions they were faking their symptoms. The fact that this group of patients was the one uploading videos is consistent with a failure on behalf of the medical profession to provide them with answers, and this forced patients and families to look online for help. Maybe the solution is (1) both better help for such patients from the medical profession, (2) providing them with the information they need to understand their condition and to make informed choices about treatment, and (3) better online resources where good quality information about functional movement disorders can be accessed.
Do patients find validation of their functional (psychogenic) movement disorders on the Internet?
Dr. Hallett: I certainly agree with Mark. It may well be that patients with functional disorders find some validation in their diagnoses by posting on the web. If it is on the web it must be true. And then others see the video and confirm online that the disorder is indeed what the original patient said that he or she had. This gives even more confirmation to patients and families. This format can spiral out of control with patient mimicry, as we have seen, for example, in the mass hysteria episode a few years ago in upstate New York . The next level problem, as Mark notes, is that the various contributors suggest therapies, which may or may not be appropriate. As such, patients may well respond to inappropriate therapy (since they can be placebo responders), and this inappropriate therapy may also get amplified on the Internet. It is sometimes difficult to combat all the false information. The solution is to continue to do our best for the patients. We need to have better public information and education about functional disorders.
Are foundations and patient advocacy groups struggling with functional (psychogenic) videos being uploaded to the Internet?
Michael S. Okun, National Medical Director of the Parkinson’s Foundation: We have been running a worldwide "Ask the Doctor" and also a social media blog at the National Parkinson Foundation for over a decade and we have become increasingly concerned over uploads of patient videos, particularly those of functional (psychogenic) movement disorders. One of our biggest concerns has been the safety of the patients who upload these videos. We have concerns about suicidal ideation and potentially serious unaddressed mental health issues. As foundation and advocacy groups, we all want to assist patients and families regardless of diagnosis and it is has become challenging to react to these videos and posts in a meaningful way without adding to the chaos of Internet and social media misinformation. One of the best things we can do as organizations and patient advocates is to try to rapidly connect those in need with appropriate interdisciplinary medical professionals and community resources.
Can we create a supportive community for the functional (psychogenic) movement disorders patient and families posting on the Internet?
Susan Jeffrey, Executive Editor, Medscape Neurology: In just the last 15 years, we’ve seen a revolution in how we communicate with each other and consume information. This is a revolution that’s still ongoing. Like in other areas of life – family and romantic relationships, job hunting, education, hobbies or special interests – the exhilarating potential of this world-wide platform is fraught with the possibility of unexpected outcomes.
For people with functional movement disorders, finding information about their rare condition, reaching out to others who are similarly affected, and perhaps the hope of finding by serendipity an effective treatment or strategy that hasn’t been considered before, are heady possibilities of online search. But so too is incorrect information, quackery and so-called Internet trolls, who respond only with judgment and insult. Knowing what patients want when they go online is a first step toward perhaps developing such resources to offer them – not just access to true, reliable information but a supportive community to help share the burden and foster innovation.
1) Stamelou M, Edwards MJ, Espay AJ, Fung VS, Hallett M, Lang AE, Tijssen MA, Bhatia KP. Movement disorders on YouTube -- caveat spectator. N Engl J Med. 2011 Sep 22;365(12):1160-1. doi: 10.1056/NEJMc1107673.