Online Community For CFS
As a service dedicated to providing online communities serving those with who have found their lives changed forever by medical conditions, PatientsLikeMe has decided to expand its services for those with fibromyalgia to include a subgroup for those who suffer from myalgic encephalomyelitis, or ME. This condition is known in common parlance as chronic fatigue syndrome, or CFS. It is hoped that by sharing their experiences, CFS sufferers will locate others with the same sets of symptoms who may also share the just-discovered condition known as xenotropic murine leukemia virus-related virus (XMRV). Researchers hope the online community will help them study the impact of this virus on those with CFS.
Those studying the XMRV retrovirus have stressed only that there is an apparent link between the virus and CFS. As yet, it has not been proven that the virus is a causative factor in developing the disease. Therefore, it remains to be seen whether XMRV is a causal factor in CFS, a side-effect of the condition, or whether there may be still another condition that coexists with CFS and has a link to the virus.
Jamie Heywood, chairman and cofounder of PatientsLikeMe commented, “With 1 million patients diagnosed with CFS, and potentially 10 million Americans who could be infected with the XMRV virus, there is an [sic] 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.”
The fibromyalgia community of the PatientsLikeMe platform has expanded to over 7,000 sufferers and many of them have CFS. CFS is a known, fibromyalgia-related ailment. Researchers have found the community to be a rich source of information on both of these conditions. PatientsLikeMe have offered CFS participants the chance to indicate positive results for XMRV on their profiles in the same way they have allowed Parkinson’s and ALS community members to include genetic information on their profiles.
David S. Williams III, who heads up the business development side of PatientsLikeMe explains, “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 announced the new community for CFS sufferers at the health technology conference known as TEDMED held in San Diego, CA. The addition of CFS brings the roster of conditions with available communities on PatientsLikeMe up to a total of 17. There are now over 45,000 patients in the 17 online communities sharing information on symptoms, treatments, and treatment outcomes. PatientsLikeMe is not resting on its laurels, however, and has plans to launch a community for those with epilepsy by the beginning of 2010.