It turns out that there are a number of ALS patients who test treatments themselves rather than move at the slow pace of medical research and have become part of "an emerging group of patients willing to share intimate health details on the Web in hopes of making their own discoveries."
There was news recently, about a patient (Alan Felzer) with ALS decided to act versus waiting for the disease to take away his independence. This patient turned to the Internet and became “his own medical researcher—and his own guinea pig.” It turns out that there are a number of ALS patients who test treatments themselves rather than move at the slow pace of medical research—only one drug has received FDA approval to treat ALS symptoms and only works for some patients with limited effects—and have become part of “an emerging group of patients willing to share intimate health details on the Web in hopes of making their own discoveries.” This has led to ALS-focused forums listing links to the most up to date research showing any sign of improvement.
The results from a small study in Italy using lithium to treat ALS patients “saw the disease’s progress slow substantially.” Based on these findings, many patients decided to try this treatment too, doing so by persuading their doctors to prescribe lithium “off label,” which “is a common practice, researchers say, when patients are facing a terminal illness.” In fact Feltzer started taking the treatment, leading to the creation of the ALS-lithium project run on PatientsLikeMe.com in order to “attract volunteers and track progress.” Jamie Heywood, co-founder of PatientsLikeMe, said that ultimately the site was created due to his frustration on how the medical system lacked transparency and speed or urgency.”
Just like the warnings physicians give to people using the Internet for self diagnosis, there are some saying that this type of research “lacks rigor and may lead to unreliable results, false hopes and harm to patients.” As Edward Langston, MD, immediate past chairman of the AMA’s board, said, “The Internet is a wonderful tool, but you know, it’s buyer beware.” However, Langston has said that although there are risks to patients conducting research on their own, there have been many times when a doctor stumbles upon treatments, and perhaps patients might do the same.