Caution about Getting Information from the Internet
The Dystonia Coalition agrees with the recommendation in a letter to the Editor of The New England Journal of Medicine (September 22, 2011)
The Dystonia Coalition, a collaboration of medical researchers and patient advocacy groups, working to advance the pace of clinical and translational research in the dystonias concurs with the recommendation presented in a letter to the Editor of The New England Journal of Medicine (September 22, 2011), entitled, Movement Disorders on YouTube – Caveat Spectator. A panel of experts in movement disorders recommended that physicians caution their patients about getting information from potentially unreliable sources on the internet. This recommendation was made following a review of the 29 most popular YouTube videos of individuals claiming to have an organic movement disorder. The review showed that psychogenic cases of various self-reported forms of dystonia and other movement disorders were prevalent. Only 34% of the videos were judged to actually represent the disorder the individual claimed to have.(http://www.nejm.org/doi/full/10.1056/NEJMc1107673.
Misinformation from unreliable sources can cause undue concern, delay proper diagnosis, and lead to utilization of unproven and potentially harmful treatments.
Historically dystonia has been plagued by the view that it is a result of psychiatric disturbances, in part due to its varied and sometimes unusual clinical forms. It is now well recognized that dystonia is a neurological disorder, although cases resembling dystonia, as for other movement disorders, may occasionally occur as manifestations of psychogenic disorders. Evaluation by a movement disorders specialist is essential for patients with issues relating to diagnosis and treatment.