jamie heywood

PatientsLikeMe Adds Online Community for People With Chronic Fatigue Syndrome

7 Comments / Chronic Fatigue Syndrome, Fibromyalgia, Research / By

PatientsLikeMe made the following announcement last night at the TEDMED conference.  For more on Jamie Heywood’s presentation, check out what people are saying on Twitter. – – – – – – – PATIENTSLIKEME ADDS ONLINE COMMUNITY FOR PEOPLE WITH CHRONIC FATIGUE SYNDROME Researchers Use Open Medical Network to Measure Real-World Impact of XMRV Virus Cambridge, […]

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The Smart List (Forget Medical Privacy) and The Future of Healthcare

4 Comments / Patient Experiences / By

Check out the October issue of WIRED magazine!  PatientsLikeMe makes “The Smart List:  12 Shocking Ideas That Will Change the World.”  In an interview with Brendan Koerner (“Forget Medical Privacy“), Co-founder Jamie Heywood talks about how “the lack of openness [in medicine] is making us sicker” and how sharing individual health data can benefit you. 

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Patients like me declare our health data rights

2 Comments / Patient Experiences, Research / By

“We the people…have the right to our own health data.” That’s part of a collective new Declaration of Health Rights, officially unveiled tonight on the newly launched HealthDataRights.org. It is time to turn the conversation from fear and privacy to sharing data and finding new treatments and better care. The Declaration represents reality that what

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Sharing Is A Right As Well

10 Comments / ALS, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Parkinson's Disease, Patient Experiences, Rare Diseases, Research / By

We do not live our lives alone. We live our lives in collaboration with others. We communicate our needs and our goals, and together we work to achieve them. This is exceptionally true for families and individuals dealing with illness. Whether you’re dealing with depression, or pain, or perhaps the fear and stigma of HIV,

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Does It Work? Lithium and ALS

33 Comments / ALS, Patient Experiences, Research / By

by James Heywood Update (March 7, 2008):  PatientsLikeMe ALS Lithium Research released. Does it work? On February 12th of this year, Proceedings of the National Academy of Sciences (one of the leading science journals) published a paper entitled — Lithium Delays Progression of Amyotrophic Lateral Sclerosis. After 10 years researching ALS, I believe it is

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