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… Continue reading Happy 1st Anniversary Mood Community!
Category: Conditions
Living with a health condition? On the PatientsLikeMe blog, find helpful health information and patient stories about being diagnosed, trying different treatments, and living day-to-day with a chronic condition.
A new gene for ALS: What sharing your genetics could mean for research
In today’s issue of the journal Science two papers describe the discovery of a new gene for ALS (you can read the abstracts here and here). Around 90% of ALS cases are sporadic, i.e. we don’t know what causes them, but for 5-10% of patients the disease runs in their family (known as familial ALS,… Continue reading A new gene for ALS: What sharing your genetics could mean for research
Patients Like Me Can Run 13.1 Miles With Fibromyalgia
13.1 grueling miles. A half marathon. Running that distance for anyone is a challenge that takes months of training and dedication. Imagine running that distance having fibromyalgia. My close friend and PatientsLikeMe member, Minnie Lee, has fibromyalgia and courageously ran in the Surf City Half Marathon last Sunday. This wasn’t even her first time running… Continue reading Patients Like Me Can Run 13.1 Miles With Fibromyalgia
ALS Symposium 2008: New features for ALS patients
This blog post is the second in a series from our attendance at the 19th International Symposium on ALS/MND in Birmingham UK in November 2008. When PatientsLikeMe attended the previous ALS/MND Symposium in Toronto Canada in December 2007, I was given a platform presentation to show the assembled clinicians, scientists and researchers what we had… Continue reading ALS Symposium 2008: New features for ALS patients
ALS Symposium 2008: A history of ALS online
Back in November, Jamie Heywood and I attended the 19th International ALS/MND Symposium in Birmingham, UK. As part of an ongoing series of blog posts reporting from that conference, I have put together a narrated slideshow which is an abridged version of a platform presentation I was asked to give at the conference about the… Continue reading ALS Symposium 2008: A history of ALS online
10,000 MS Patients and Going Strong…
Today, the PatientsLikeMe Multiple Sclerosis (MS) community welcomed its 10,000th patient member! As we end 2008, more than 10,000 patients in our community are coming together to share their life experiences on PatientsLikeMe. How much experience is that? Try more than 32,000 YEARS of collective experience with MS. More members than ever are sharing in-depth… Continue reading 10,000 MS Patients and Going Strong…
Voices of Fibromyalgia: Patient Video
As we end the year, we give you the last 2008 video from PatientsLikeMe and the first of our new fibromyalgia community. We asked this newly launched community to tell us “How are you overcoming fibromyalgia?” This is what they had to say: Thanks to all of you who contributed your “voice” to this video.… Continue reading Voices of Fibromyalgia: Patient Video
Structuring and Presenting the Patients’ Perspective at AMIA
PatientsLikeMe members share health data on the site adding their own individual-level health experience to a repository of structured outcome data. The result? An unprecedented data set that informs medical conversation not only within the patient community but also with the larger scientific one. Earlier this fall, the venue for this conversation was the annual… Continue reading Structuring and Presenting the Patients’ Perspective at AMIA
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… Continue reading Voices of Fibromyalgia: Q&A with Minnie Lee
CBS Evening News, BusinessWeek, Fibromyalgia: Oh, Just Your Typical Friday
It’s exciting times for PatientsLikeMe! Today, our new community for people with fibromyalgia goes live on our site. Spread the word! Let’s bring a new level of understanding to this disease in a way that nobody else can. Next week: a blog series regarding this new community and the people in it. If you haven’t… Continue reading CBS Evening News, BusinessWeek, Fibromyalgia: Oh, Just Your Typical Friday