Sharing. It’s a concept we all learn at a very young age. Oftentimes reminisced as happening in the sandbox, we think back to our young selves giving up what we hold most dear (in this case, some cheap plastic toy) to allow someone else to benefit from it. It seems so simple and obvious, but… Continue reading Sharing to Feel Better
Category: Patient Experiences
Share On: Parkinson’s Awareness Month and PatientsLikeMe PD Community Anniversary
Did you know this April is both Parkinson’s Awareness Month and the 2-year anniversary of the PatientsLikeMe Parkinson’s community? We invite you to celebrate with us all month as we share real-world patient insights and experiences of living with this disease…and we ask you to share on! The PatientsLikeMe Parkinson’s community has come a long… Continue reading Share On: Parkinson’s Awareness Month and PatientsLikeMe PD Community Anniversary
Annoyed or Impressed By Your Therapist? PatientsLikeMe Mood Members Chime In
In a recent blog post by New York Times’ Tara Parker-Pope, PsychCentral highlights “The 12 Most Annoying Habits of Therapists.” Launched a year ago this week, our very own Mood community has more than 1,300 patients using “Individual Therapy” as a treatment for their condition. We asked them to tell us some of the habits… Continue reading Annoyed or Impressed By Your Therapist? PatientsLikeMe Mood Members Chime In
Happy 1st Anniversary Mood Community!
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!
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
We Share Too! Contributing Open Source Code
“Open source software” is created and improved collaboratively, over the web, by the people who need it, even if they work for different companies in different industries on different continents. Similar to our Openness Philosophy, the premise behind open source software is that none of us is as smart as all of us. Software developers… Continue reading We Share Too! Contributing Open Source Code
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
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