1 posts from October, 2009

PatientsLikeMe Adds Online Community for People With Chronic Fatigue Syndrome

Posted October 30th, 2009 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.

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Researchers Use Open Medical Network to Measure Real-World Impact of XMRV Virus

Cambridge, MA–October 30, 2009–PatientsLikeMe (www.patientslikeme.com), the leading online community for people with life-changing conditions, announces the expansion of its fibromyalgia community to welcome patients with chronic fatigue syndrome (CFS), also know as myalgic encephalomyelitis (ME). By sharing information about their experience with CFS, patients can now find others just like them, including other patients who may have the newly discovered xenotropic murine leukemia virus-related virus (XMRV). The purpose of this expansion is for PatientsLikeMe to research the impact XMRV has on CFS patients.

“With 1 million patients diagnosed with CFS, and potentially 10 million Americans who could be infected with the XMRV virus, there is an unique opportunity to use the power of our open medical network to understand this illness and accelerate the validation and development of new biomarkers and treatments,” says Jamie Heywood, co-founder and chairman of PatientsLikeMe.

There are currently more than 7,000 patients, many who have CFS, in the PatientsLikeMe fibromyalgia community sharing meaningful data for researchers to analyze about the condition. As part of this expansion, the PatientsLikeMe platform will allow patients who test positive for XMRV to indicate that on their profiles, much how ALS and Parkinson’s patients can now add their genetic information.

Adds David S. Williams III, head of business development at PatientsLikeMe, “This discovery may spur research into the efficacy of anti-retrovirals for patients with CFS, which could have a dramatic impact on the $10 billion market for these medications.”

Heywood will announce the new CFS community on stage at the health technology conference TEDMED in San Diego, CA today. CFS marks the 17th condition available to patients on PatientsLikeMe, which now boasts more than 45,000 patients sharing health data on treatments, symptoms and outcomes. The company’s next community for people with epilepsy is scheduled to launch in early 2010. More about PatientsLikeMe partnerships can be found on its partner site: http://partners.patientslikeme.com.

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