HIV/AIDS

HIV: The Story is Far From Over

Recently, PatientsLikeMe opened a community for people affected by HIV, our first outside the area of neurological diseases. Since then, we’ve gained some 700 patients in the community, including a member who goes by the name of “BrightonBear.” His experiences are quite unique as he’s been living with HIV for more than 25 years and has seen first-hand many of the tremendous changes that have happened in that time. Through my conversations with him, I’ve had to revise a lot of my views about HIV. Part 1 Part 2 A few years ago, I did my PhD on the psychological impact of Amyotrophic Lateral Sclerosis (ALS, or more commonly called Lou Gehrig’s disease); a mysterious and rapidly progressive condition with no effective treatment and little public recognition. In examining other disease areas, I would sometimes look over the fence to other conditions to get a glimpse of what the future could be like. My hope was that one day, with a lot of work, we could replicate in ALS the great medical success story that has been HIV. In just 25 years, survival time has gone from being very brief to being effectively normal. The mechanism of the virus is …

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PatientsLikeMe Update: November 2007

It’s been six months since we launched our first newsletter, and a lot has happened at PatientsLikeMe in that time. With the holiday season now upon us, we thought we should give thanks for the amazing strides made in all our communities. There is power in numbers, as they say, and we are grateful to every new member for increasing our ability to effect change. ALS Community We are proud to announce that our flagship ALS community has grown by nearly 50% in the last six months to 1,450 patients. We’re even prouder that it now attracts the equivalent of 10% of all newly diagnosed ALS patients in the US. To share what researchers can learn from this model for openness, our own Paul Wicks, PhD, will present a lecture on social medicine at the upcoming 18th Annual Symposium on ALS/MND, which we are co-sponsoring. Please stop by the PatientsLikeMe booth if you’ll be there! MS and Parkinson’s Communities Launched in late spring, our MS and Parkinson’s communities have also experienced staggering, if not meteoric, growth. We are delighted to report that our MS community recently hit a major milestone when it surpassed the 2,000-member mark(!) while our Parkinson’s community …

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PatientsLikeMe Update: September 2007

The buzz about PatientsLikeMe is growing! In August, Business 2.0 magazine and CNN.com recognized PatientsLikeMe as one of 15 companies that will change the world. To be selected, a company must have “the potential to rewrite the rules of existing industries or open up entirely new markets.” We couldn’t agree with this assessment more; after all, we began with that exact mission. But what’s amazing is that we’re already starting to achieve it. Thanks to the participation of thousands of patients like you, we’re well on our way to creating “a fast bypass around restrictive privacy rules that tie scientists in red tape.” As part of the implementation of this sweeping objective, we’re pleased to announce the upcoming launch of our HIV community, which we feel is an important addition to our coverage of life-changing diseases. If you know anyone affected by HIV, please send them an invitation to join PatientsLikeMe.

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