Research

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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Share and Compare: Be a PRO! Understand Your Experiences in Context

1 Comment / Epilepsy, Patient Experiences, Research / By

This week on our blog, we’ve been highlighting how patients like you are putting their experiences in context.  With the launch of InstantMe and some of the design updates you read about, you can see we’re listening to your call for more functionality that lets you understand how your condition affects the whole you. Patient

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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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Mental Health Awareness: What do you know about Mood Conditions?

Mental Health, Patient Experiences, Research / By

In honor of this month’s Mental Illness Awareness Week, here’s a snapshot of what’s happening in our PatientsLikeMe Mood community. Launched in 2008, the community now has more than 18,000 patients. Below are some interesting facts about the community, so please read and share on! DID YOU ALSO KNOW… You can search for patients under

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Will Openness Bring About a Breakthrough?

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

Share your thoughts in an innovative online event with our partner Myelin Repair Foundation. Our Openness Philosophy is centered around the idea that patients sharing their real world health data allows for collaboration on a global scale; that it will accelerate new treatments; and that it can change our health care system.  In this same

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Personalized Medicine: Making It All About You

ALS, Patient Experiences, Research / By

Earlier this year, the University of Arizona hosted a unique meeting for scientists, policy makers, and law experts to explore the legal, ethical, and policy implications of personalized medicine. The opening keynote was by Dr. Lee Hartwell, 2001 Nobel Prize recipient in Medicine / Physiology and Director of the Fred Hutchinson Cancer Research Center and

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Multiple Sclerosis: Sustaining Care, Seeking a Cure

6 Comments / Multiple Sclerosis, Research / By

Our research team here at PatientsLikeMe carries out world-class research in collaboration with academic centers, commercial partners (see “how we make money“), and to help answer questions from our patients. We share our findings with the world through this blog, peer-reviewed publications, and by attending academic conferences like the Consortium of Multiple Sclerosis Centers (CMSC)

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It’s Official: Sharing Health Data Improves Outcomes

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

(Listen here to the PatientsLikeMeOnCallTM podcast on this topic) Last week the PatientsLikeMe R&D team published a study entitled “Sharing Health Data for Better Outcomes on PatientsLikeMe” in the Journal of Medical Internet Research (JMIR), the leading open access peer-reviewed journal on health care in the Internet age. The study aimed to find out direct

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Know Thy Self – Measuring Your Quality of Life

2 Comments / Epilepsy, HIV/AIDS, Organ Transplants, Parkinson's Disease, Research / By

Last Fall, PatientsLikeMe introduced our Quality of Life (QoL) tool which is displayed on the profiles of members in the HIV community.  By answering a few questions, patients can see how HIV is impacting them – physically, socially and mentally.  Today, this same QoL measure is used by thousands of patients across the HIV community

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