PatientsLikeMe was recently one of the sponsors for the 2008 MS Challenge Walk on Cape Cod, a three-day, 50-mile event held on September 5-7, 2008. More than 620 walkers participated, each raising a minimum of $1,500. Overall the event raised close to $1.4 million to benefit Multiple Sclerosis (MS) education, support, advocacy and research. The […]
PatientsLikeMe sponsors MS Challenge Walk on Cape Cod Read More »
Last week, PatientsLikeMe presented a keynote address at the inaugural Medicine 2.0 Congress in Toronto, Canada in front of 200 researchers from 20 countries. A new, annual international conference on Web 2.0 (social web) applications in health and medicine, this year’s event was centered around the theme: “Building Virtual Communities and Social Networking Applications for
Bringing you Medicine 2.0 Read More »
PatientsLikeMe was a proud sponsor of the National Parkinson’s Foundation Young-Onset Parkinson’s Network (YOPN) Conference in Atlanta, GA last week. The event, coordinated by and for people living with Young-Onset Parkinson Disease (YOPD), was a huge success. Paul Wicks and I (Maureen Oakes) enjoyed working at the booth, meeting many of our current members and
PatientsLikeMe at the Young-Onset Parkinson’s Network Conference Read More »
Members of our Multiple Sclerosis (MS) community have been discussing this story in the Boston Globe which reports severe adverse events experienced by two European MS patients on the drug Tysabri (Natalizumab). Tysabri is a monoclonal antibody which seems to have a potent effect on MS; the original trial published in the New England Journal
Tysabri and the 2 New Reported Cases of PML Read More »
Updated: The Genetic Information Nondiscrimination Act (GINA) was signed into law by President Bush on May 21, 2008. In a victory for openness and personalized medicine, on May 1, Congress sent President Bush a bill forbidding employers and health insurers from discriminating on the basis of genetic information. The Genetic Information Nondiscrimination Act was passed
Genetic Discrimination: The End Before the Beginning Read More »
I came across this Wall Street Journal article earlier this week which details how patients with life-changing illnesses are using online services such as EmergingMed to help them enroll in clinical trials. The article points out that only 3% of adult cancer patients participate in trials, citing lack of awareness as a crucial factor. They
Let’s make clinical trials more rewarding for patients Read More »
Members of PatientsLikeMe interact a number of ways: viewing profiles, reading treatment and symptom reports, and posts in our forums. In contrast to many of the most heated arguments on the internet (politics, religion, Star Trek…), the discussions on PatientsLikeMe have a tangible impact on people’s lives. Patients with a chronic condition often spend many
The Power of “Light Touch” Moderation Read More »
Recently, PatientsLikeMe opened a community for people affected by HIV, our first outside the area of neurological diseases. Since then, we’ve gained some 700 patients in the community, including a member who goes by the name of “BrightonBear.” His experiences are quite unique as he’s been living with HIV for more than 25 years and
HIV: The Story is Far From Over Read More »
In one of the greatest honors in our young company to date, PatientsLikeMe was featured in today’s New York Times Magazine. The article, entitled Practicing Patients, appropriately discusses the pros and cons associated with sharing data-rich personal health information in an open community. PatientsLikeMe seeks to go a mile deeper than health-information sites like WebMD
PatientsLikeMe Featured in New York Times Magazine Read More »
by James Heywood Update (March 7, 2008): PatientsLikeMe ALS Lithium Research released. Does it work? On February 12th of this year, Proceedings of the National Academy of Sciences (one of the leading science journals) published a paper entitled — Lithium Delays Progression of Amyotrophic Lateral Sclerosis. After 10 years researching ALS, I believe it is
Does It Work? Lithium and ALS Read More »
