At the National Fibromyalgia & Chronic Pain Association, this year’s Fibromyalgia Awareness Day is themed CURE FM (Campaign for Understanding, Research & Education of Fibromyalgia), and many of our members are working to do just that. Beginning as early as January, our fibromyalgia members have worked together to order t-shirts, send letters to TV shows… Continue reading It’s Fibromyalgia Awareness Day!
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.
Join the Band: Raising Our Voices for Lupus Awareness
“I was diagnosed with lupus (SLE) at age 20 and had already lost about 60% of my kidney function. I had chemotherapy for nine months along with intense steroid therapy. I thankfully went into remission and have been since four months after my diagnosis. I still struggle with fatigue and kidney problems although I was… Continue reading Join the Band: Raising Our Voices for Lupus Awareness
One for All (Video): The Road Ahead at PatientsLikeMe
“We’re just getting started on a long road to really impact your individual disease and your quality of life…” Each week this month, we’ll be posting a video interview with a member of the PatientsLikeMe executive team. You’ll hear from Ben Heywood, Jamie Heywood, David S. Williams and Paul Wicks, Ph.D. about what the recent… Continue reading One for All (Video): The Road Ahead at PatientsLikeMe
PatientsLikeMe Refutes Published Clinical Trial
Congratulations to our R&D team here at PatientsLikeMe for its most recent paper published in Nature Biotechnology (“Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm”). The full paper has been made available by Nature so you can read the results and access all of the supplemental data and figures. Below are… Continue reading PatientsLikeMe Refutes Published Clinical Trial
Hawaii 5-0: PatientsLikeMe at AAN 2011
Here at PatientsLikeMe, we are not only focused on helping patients improve their health outcomes, but also on the cutting-edge research that enables those improvements. That’s why we couldn’t imagine better news when we learned that all five of our academic submissions to the American Academy of Neurology (AAN) were accepted for exhibition at their… Continue reading Hawaii 5-0: PatientsLikeMe at AAN 2011
The Patient Voice Heard Loud and Clear at AHCJ ’11
Last week, we had the opportunity to be a part of the Association of Health Care Journalists (AHCJ) annual conference in Philadelphia, PA. Carla Johnson, medical writer for the Associated Press, invited PatientsLikeMe to be part of her session entitled “Tapping into the e-patient phenomenon.” It was a great opportunity for us to help healthcare… Continue reading The Patient Voice Heard Loud and Clear at AHCJ ’11
PatientsLikeMeOnCall™: “A Look Ahead” at Openness in Healthcare (Episode 4)
“I think we can see there are a lot of ways where openness can be powerful. What’s necessary is to help facilitate openness and reduce the barriers to sharing medical information.” – Ben Heywood PatientsLikeMe Co-Founder Ben Heywood has blogged previously about openness and sharing – and how important they are for patients. In this… Continue reading PatientsLikeMeOnCall™: “A Look Ahead” at Openness in Healthcare (Episode 4)
PatientsLikeMe® Poll Reveals Patients Share Health Data Online Prefer to Keep Quiet With Doctors, Employers
Patients Unveil Top Reasons Not to Share Health Information CAMBRIDGE, MA–(Marketwire – April 13, 2011) – According to a new PatientsLikeMe® Poll, almost one in three (29%) patients have withheld certain health information from their doctor. Of the 4,364 poll respondents, all of whom are members of PatientsLikeMe’s online health data-sharing community (www.patientslikeme.com), nearly half (47%)… Continue reading PatientsLikeMe® Poll Reveals Patients Share Health Data Online Prefer to Keep Quiet With Doctors, Employers
News Release: Survey Reveals PatientsLikeMe® Helps People With Epilepsy Improve Seizure Understanding and Medication Adherence
In today’s news… ******** BRUSSELS, BELGIUM and CAMBRIDGE, MA–(Marketwire – April 12, 2011) – In a survey amongst people with epilepsy in the U.S. who have joined PatientsLikeMe®, the leading health data-sharing website for patients, respondents indicate that better seizure understanding and improved adherence are key benefits of using the site. The majority of respondents… Continue reading News Release: Survey Reveals PatientsLikeMe® Helps People With Epilepsy Improve Seizure Understanding and Medication Adherence
PatientsLikeMe Calls All Patients With Any Condition to Join
Today, PatientsLikeMe announces its expansion in the following news release. ***** CAMBRIDGE, MA–(Marketwire – April 11, 2011) – Today, PatientsLikeMe (www.patientslikeme.com) announces the expansion of its platform and invites patients with any condition to join. The five-year-old free online health data-sharing website was previously only available to patients with 22 chronic conditions (including ALS, Parkinson’s disease, HIV,… Continue reading PatientsLikeMe Calls All Patients With Any Condition to Join