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

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

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

ALS Symposium 2008: New features for ALS patients

This blog post is the second in a series from our attendance at the 19th International Symposium on ALS/MND in Birmingham UK in November 2008. When PatientsLikeMe attended the previous ALS/MND Symposium in Toronto Canada in December 2007, I was given a platform presentation to show the assembled clinicians, scientists and researchers what we had… Continue reading ALS Symposium 2008: New features for ALS patients

ALS Symposium 2008: A history of ALS online

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