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
Introducing: Voices of Fibromyalgia
You raised your voice, we listened. Today we launch our newest community: Fibromyalgia. This is the first in our special blog series, Voices of Fibromyalgia. The impact of the disease on people’s lives can be enormous. People often have difficulty completing even the easiest of tasks during the painful episodes, while the fatigue can also… Continue reading Introducing: Voices of Fibromyalgia
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
World AIDS Day (12/1/08) – Embracing the Positive
World AIDS Day is a milestone in so many different ways. It has marked the persistence of HIV and its impact on our world, but we hope that we are approaching a turning point where World AIDS Day will come to mark progress. What this day marks, however, is that being HIV positive doesn’t… Continue reading World AIDS Day (12/1/08) – Embracing the Positive
National Family History Day
PatientsLikeMe believes in the benefits of openly sharing health information. That is why we are happy to spread the word about National Family History Day, which had its fifth anniversary on Thanksgiving 2008. As families gather this holiday weekend, National Family History Day encourages families to become familiar with the health history of previous generations. … Continue reading National Family History Day
PatientsLikeMe Report: MS Patients Still Positive for Tysabri Following July Announcement of PML Cases
PatientsLikeMe recently released a new PatientsLikeMeListen™ report: “Did the July 2008 PML announcement affect the Tysabri brand?” Among our findings, the report reveals that MS patients retained an overall positive perception of the Tysabri brand despite the July 2008 announcement of two additional PML cases. When we originally covered this topic back in August, the… Continue reading PatientsLikeMe Report: MS Patients Still Positive for Tysabri Following July Announcement of PML Cases