We’re big fans of patient-reported outcomes (PROs) here at PatientsLikeMe, defined by the Food & Drug Administration (FDA) as: “A measurement based on a report that comes directly from the patient about the status of a patient’s health condition without amendment or interpretation of the patient’s response by a clinician or anyone else.” The self-report… Continue reading FDA’s New Guidance on Patient-Reported Outcomes
Category: Fibromyalgia
PatientsLikeMe Acquires Online Pain Management Company, ReliefInsite
Today’s news release announcing acquisition of ReliefInsite. Want to receive future announcements? Sign up for our RSS feed on the press page. – – – FOR IMMEDIATE RELEASE PATIENTSLIKEME ACQUIRES ONLINE PAIN MANAGEMENT COMPANY, RELIEFINSITE20,000 Patients Reporting Moderate to Severe Pain on PatientsLikeMe Cambridge, MA and New York City, NY – February 16, 2010 –… Continue reading PatientsLikeMe Acquires Online Pain Management Company, ReliefInsite
A Year in Review: PatientsLikeMe in 2009
As 2009 comes to an end, we want to take this opportunity to thank all of our members, partners and general fans for another great year. Here’s a recap of some of the exciting happenings at PatientsLikeMe these past 12 months. Wishing you all a Happy New Year! Community MilestonesThis year, the 15+ disease communities… Continue reading A Year in Review: PatientsLikeMe in 2009
Harnessing New Media for Patient Advocacy (Part II)
A few weeks ago, I was invited to present on behalf of PatientsLikeMe at the Arthritis Foundation workshop held in Newport, RI. The presentation was on how to “harness new media for patient advocacy” – the same as what I presented at a workshop for non-profits in northern New England in August. This time the… Continue reading Harnessing New Media for Patient Advocacy (Part II)
PatientsLikeMe Adds Online Community for People With Chronic Fatigue Syndrome
PatientsLikeMe made the following announcement last night at the TEDMED conference. For more on Jamie Heywood’s presentation, check out what people are saying on Twitter. – – – – – – – PATIENTSLIKEME ADDS ONLINE COMMUNITY FOR PEOPLE WITH CHRONIC FATIGUE SYNDROMEResearchers Use Open Medical Network to Measure Real-World Impact of XMRV Virus Cambridge, MA–October… Continue reading PatientsLikeMe Adds Online Community for People With Chronic Fatigue Syndrome
Sharing Is A Right As Well
We do not live our lives alone. We live our lives in collaboration with others. We communicate our needs and our goals, and together we work to achieve them. This is exceptionally true for families and individuals dealing with illness. Whether you’re dealing with depression, or pain, or perhaps the fear and stigma of HIV,… Continue reading Sharing Is A Right As Well
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
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