symptoms

Happy 1st Anniversary Mood Community!

A year ago today, PatientsLikeMe launched our combined Mood community for patients with depression, anxiety, bipolar, obesessive-compulsive disorder and post-traumatic stress disorder.  It was first announced to the world in Thomas Goetz’s article, Practicing Patients, featured in New York Times Magazine. Since then, more than 8,700 patients have joined the community, sharing detailed information about their symptoms, treatments and overall progress to learn more about themselves and others. Besides specific drug therapies (like Clonazepam or Lamotrigine), did you know many patients cite Listening to Music and Journal Writing as top treatments as well?  Check out what they have to say. Do you have problems concentrating?  That’s the number one symptom reported by our members.  Other top symptoms include muscle tension, headaches, back pain and stomach pain. In the coming weeks, we will continue to share some interesting tidbits about the community, including some powerful personal stories straight from our members.  Stay tuned!

Voices of Fibromyalgia: Q&A with Minnie Lee

PatientsLikeMe’s David S. Williams sits down with well-known blogger, triathlete and fibromyalgia patient, Minnie Lee.   Lee, an early member of our new fibromylagia community which launched this week, has a public profile on the site. *** (David) When were you diagnosed with fibromyalgia and when were your first symptoms? (Minnie) I was diagnosed in late 2002.  However, my first symptoms started as early as 1998, and then became more prevalent and frequent in late 2000. (David) How has fibromyalgia changed your life? (Minnie) On its onset, the changes were negative.   I couldn’t engage in my usual social activities and I was getting sick more often than I was used to.  It was a shock to me, having always been such a healthy person all my life.  I limited myself even further using my “strangely named illness” as a crutch, which led me to be even more dormant.  That was early on.However, in the past 2-3 years, I have to say that fibromyalgia changed my life for the better.  It has given me purpose in life – to improve my own life and help others improve theirs by example of exercise, healthy eating and proper treatments.That said, while I still manage …

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PatientsLikeMe sponsors MS Challenge Walk on Cape Cod

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 walkers persevered through some very nasty weather during parts of the walk.  Fortunately, the last day was a spectacular early Fall day in New England, as the event ended with the parade of walkers onto the Hyannis common. We had the chance to talk to  many participants over the course of the three days, and showed them how PatientsLikeMe can help them share their health data and experiences and learn from others. We showed them a public member’s profile to demonstrate how they could use enter treatments, symptoms and outcomes and chart the course of their disease over time.  They were also very excited to see how this information is aggregated in our Treatment Reports.  Whether they wanted to share their positive experiences with a specific treatment, or were looking for more information about a newly considered treatment, walkers definitely saw great value in our …

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Bringing you Medicine 2.0

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 Patients and Consumers.” You can view the entire conference proceedings online.  The event is organized by Gunther Eysenbach, MD MPH, who is the editor and publisher of the Journal of Medical Internet Research, where Jeana Frost and I recently published our paper – “Social Uses of Personal Health Information Within PatientsLikeMe.”  This was a great opportunity to update the research community on how our patient members are engaging in data-driven discussions about their health.  In my presentation, I gave an overview of the site, summarized some of our published research results, and provided examples of how patients are using our forum and profile comment tools to better understand their own and other’s experience of symptoms and treatments.  What really impressed this audience is that PatientsLikeMe is delivering the best of what “medicine 2.0” can potentially deliver to the healthcare consumer, and patients are using it.  …

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PatientsLikeMe Unleashes Real-World Treatment and Symptom Information to the Public for ALS and Multiple Sclerosis

PatientsLikeMe, the leading treatment and outcome sharing community for people with life-changing conditions, has released the most comprehensive real-world treatment and symptom dataset on ALS (Lou Gehrig’s Disease) and Multiple Sclerosis (MS). Previously, similar real-world information would have had to be mined and aggregated from proprietary sources such as hospital systems or insurance companies. Now, anyone can go to PatientsLikeMe.com and search for a particular treatment or symptom to find out the experience of over 2,300 patients. This unprecedented database includes medication dosage ranges, lengths of time on a treatment, reasons for discontinuation, symptom severity, and other key experience measures on over 1,300 treatments and 300 symptoms. Learn more….

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