Fibromyalgia

The Patient Rules. A Discussion with the PatientsLikeMe Executives

1 Comment / ALS, Chronic Fatigue Syndrome, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, One for All, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases, Research / By

We recently sat down with our executive team here at PatientsLikeMe in our first-ever roundtable-format podcast.  In this PatientsLikeMeOnCallTM interview, we ask Co-founders Ben and Jamie Heywood, Chief Marketing Officer David S. Williams III, and R&D Director Paul Wicks PhD to discuss why our recent series themes are so important to the history and future […]

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One for All: Interview with Babsie (Fibromyalgia Community Welcomer)

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To close out this week’s blog series (“One for All”), we bring you an interview with another noted “welcomer” from our Fibromyalgia community.  Meet Babsie.  A member of the 19,000-member community, she has commented on hundreds of patient profiles to date (which is highlighted in a graphic on Jeff Cole’s earlier blog here).   Read

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One for All: The PatientsLikeMe “Welcome Wagon”

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In yesterday’s post, we looked at some of the ways members of the PatientsLikeMe community are connecting with other patients and the value they are getting from it.  Today, we’ll highlight how one person can make an enormous difference and inspire you with her ability to connect with others. One method of reaching out to

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Share and Compare: From the mouths of patients

ALS, Chronic Fatigue Syndrome, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases / By

As we round out our “Share and Compare” week, here are a few quotes that some of our members have shared regarding the impact of being able to see where you fit in. You’ll read in the quotes how patients like you can find solace in the fact that there are others out there experiencing

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Share and Compare Your Health Experience

1 Comment / ALS, Chronic Fatigue Syndrome, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases / By

“I want to know if what I’m going through is normal for a patient like me.” This is a sentiment we’ve heard from so many of you throughout our communities.  This week, we’re focusing our blog on some of the ways we’re trying to help you put your experiences in context.  It’s a concept we

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Share and Compare: How are you feeling? Find out with InstantMe!

12 Comments / ALS, Chronic Fatigue Syndrome, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases, Research / By

Here at PatientsLikeMe we strive to give you the tools and functionalities you want and need to gain insights into your conditions, including putting your experiences in context.  Today, we’re introducing a new tool in all of our communities called “InstantMe.”  Want to chart how you’re feeling day in and day out?  Now you can.

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PatientsLikeMe at Health 2.0: Paths to Insight

Fibromyalgia, Patient Experiences, Research / By

Last month, I spoke once again at the Health 2.0 conference in San Francisco.  The video of my presentation is now online.  Here’s a snapshot of what I covered in the 6-minute talk: The wealth of data shared in a PatientsLikeMe treatment reports (e.g., what fibromyalgia patients are sharing about Cymbalta and Lyrica) A suite

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What Data Do We Sell? A Continued Discussion about “Data Scraping”

9 Comments / ALS, Chronic Fatigue Syndrome, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases / By

In response to the Wall Street Journal article published last week, we’ve had a lot of great discussions about the role of honesty and transparency. Transparency is about you – members of the PatientsLikeMe community – knowing how we make money and what we do with the data you’ve entrusted to each other and PatientsLikeMe.

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PatientsLikeMe in Wall Street Journal: Transparency, Openness and Privacy (cont’d)

8 Comments / ALS, Chronic Fatigue Syndrome, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases / By

Journalist Julia Angwin of the Wall Street Journal just published an article describing how a major media monitoring company, Nielsen BuzzMetrics,  scraped our forum last Spring.  (See my previous blog post on the incident – “Transparency, Openness and Privacy”) Julia’s piece includes details regarding how this incident happened, how we (and you) responded and more. 

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Series Premiere of “The Patient Voice” – Meet Pokie Too!

5 Comments / ALS, Chronic Fatigue Syndrome, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases / By

“This represents my family, we share everything together.” – PokieToo, PatientsLikeMe Parkinson’s Community “The Patient Voice” is here!  Are you ready to listen in?  Today is the official premiere of our new PatientsLikeMeOnCallTM podcast, “The Patient Voice.”  Our first guest is Parkinson’s community member, PokieToo. Pokie is the founder and creator of the PatientsLikeMe Parkinson’s

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