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.

Apparent Link

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.

Dramatic Impact

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.

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I was pretty much bed bound at one time but a young lady (neighbor) got me out moving and walking. I started out with a walker and eventually used a cane. No matter how much it hurts you need to move. BUT the brain fog remained. I now have developed arthritis and just trying to get from the recliner to the bathroom is scary and very painful. I am back to the walker as well :-/
Hi Belindalu, I'm so sorry your going thru so much. The way I found my fibro doctor that is helping me is from physical therapist, because my shoulder pain was horrible and they recommended my doctor. Hope this helps a little. Take care!
Hi, i was diagnosed about 3 years ago and have benn going progressively down hill since :( What is everyones response from their GP? I have been requesting help with various problems and have only recntly realsed they are all/possibly symptoms of fibro. Ie night sweats, terrible problems staying asleep, chest pain (costichondritis), leg pain in the evening to such n extent that i hve o keep adjusting position to ease the discomfort (restless leg syndrome), to name a few. My GP has not suggested any of the above, it is through my own research of my symptoms that i have discovered the commection with fibro. I am on no medication to help although ive begged for assistance. Has anyone else had this? I really dont know what to do! Any advice would be gratefully appreciated. B x