PatientsLikeMe Adds Online Community for People With Chronic Fatigue Syndrome

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 (, 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:

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7 thoughts on “PatientsLikeMe Adds Online Community for People With Chronic Fatigue Syndrome”

  1. Kathy, I feel for you sweetie. I had to come off of ALL my Lyrica & provigil due to side effects .So i amhurting big time also. I’ll send some prayers yours your way & ask you to do the same for me. Gentle hugs,.Peaches la rou

    Isure would like to know how to go about being tested for the XMRV virus they’ve identified ! 7

  2. I too, experience a lot of pain and stiffness. My heart goes out to anyone in the boat with me. We are all rowing and trying our best to put our best forward and there are days that no matter what we do, it just dosen’t get better. I suffer from many afflictions, thus my name “soup” of which my doctor dubbed me. I will pray for you also that you might have the strength to endure the pain and know that there is a higher help that deems a reason for all that exists…..may you find your answers.

  3. Just curious if any fibro patients have tendonitis problems and can describe their pain to me…I do not know if what i feel is fibro pain..but i sure had a bad day today woke up with pain in my extremities… painful arms and legs..felt like my veins hurt…i take celebrex and i could only take tylenol which did help with the pain. I always feel like i need a massage…does anyone else feel like this… this fibro pain and i have tendonitis in my foot and elbow .

  4. Pingback: The Value of Openness: The PatientsLikeMe Blog » A Year in Review: PatientsLikeMe in 2009

  5. I have the RNaseL dysfunction. I was in an Ampligen trial when diagnosed with it. No, I don’t know if the Ampligen helped it or not. My CFS improved a tiny bit during the trial.
    I have been reading about the difference betweeen M.E. and C.F.S. at a website
    According to what I’ve read their is a diagnostic code for ME in the US.

    Has anyone been diagnosed with M.E. in the U.S??????????

    If so, who was the Doctor????????????
    I am interested in getting the M.E. diagnosis which describes my symptoms far more better than the CFS diagnosis that I received.

  6. Jeanna1914 wrote: “I have been reading about the difference betweeen M.E. and C.F.S. at a website…Has anyone been diagnosed with M.E. in the U.S?…If so, who was the Doctor?… I am interested in getting the M.E. diagnosis which describes my symptoms far more better than the CFS diagnosis that I received.”

    My thoughts and needs exactly. The N.A.M.E.-u.s. (National Alliance for Myalgic Encephalomelitis-U.S.) is addiment that M.E. is a recognized, blood-test diagnosable disease of the CNS (due to viral infection) AND IS NO WAY cfds or fms.

    Based on their symptoms lists, I HAVE M.E. I also can’t afford all the fancy dancy blood tests and CT scans and etc (no health ins and husband is self-employed.)

    Anybody know of research centers offering to do these diagnostic tests for free? And YES YES YES, WHERE IS THERE A DOC IN THE U.S. WHO DX AND TREATS M.E.???

    BTW, I’m on the Guaifenesin Protocol by Dr. R. Paul St. Amand out of Southern CA who believes that ME and CFSD and fms are all the same with certain symptoms manifesting stronger/weaker for different people.

    Ugh… THIS IS EXACTLY why I came to this website in the first place: LIMBOLAND!

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