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
Category: Patient Experiences
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
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 mean… Continue reading World AIDS Day (12/1/08) – Embracing the Positive
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
Should You Share Your Health Information Online?
Openness. Privacy. These philosophies stand in direct opposition in the question of which is better for consumer health. Should people be open with their health information or private? Certainly there are times for both, right? Not according to some privacy advocates. On October 22, 2008, Deven McGraw from the Center for Democracy and Technology cited… Continue reading Should You Share Your Health Information Online?
Health 2.0: Where do we go from here?
A few nights ago, I was honored to give a keynote at the second Health 2.0 Northeast conference held right here in our Cambridge, MA backyard. It’s exciting to see old friends and new emerging start-ups coming together to try and make a dent in the $2 trillion industry that is healthcare in the U.S. … Continue reading Health 2.0: Where do we go from here?
Ben Heywood, PatientsLikeMe Wins Boston Business Journal’s “Champions in Healthcare” Award
Last Friday (September 26, 2008), our Co-founder and President, Ben Heywood, was honored at the Boston Business Journal “Champions in Healthcare” award ceremony. Ben was one of two recipients recognized in the Innovation category. These regional awards highlight outstanding individuals and companies from the Boston-area who are making a difference in healthcare, including winners across… Continue reading Ben Heywood, PatientsLikeMe Wins Boston Business Journal’s “Champions in Healthcare” Award
How representative are PatientsLikeMe patients to the general population?
Mimi Yin over at The Common Data Project blog posed some interesting questions about data in our communities: Back in April, I wrote about the site PatientsLikeMe.com, which provides a wonderful new service that allows individual users to share the most intimate details of their medical conditions and treatments, which in turn creates a pool… Continue reading How representative are PatientsLikeMe patients to the general population?
More Than Meets the Eye: Non-motor Symptoms in Young-onset Parkinson’s Disease
Most people think of Parkinson’s disease (PD) as a condition of aging, and most of the time they’re right. Looking at the population as a whole, about 1-2% of people over the age of 65 have PD, and it’s usually a condition that is most severe in patients in their 70’s and 80’s. However, about… Continue reading More Than Meets the Eye: Non-motor Symptoms in Young-onset Parkinson’s Disease
PatientsLikeMe Announces New Partnerships
At PatientsLikeMe, our Core Values drive all of our business processes including selection of partners. We are proud to announce our three newest partnerships which include both nonprofit and academic institutions. Note: At all times, our members can access information about what we do with their data, how we make money, and who is partnering… Continue reading PatientsLikeMe Announces New Partnerships