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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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Patients Like Me

Discussion in 'Action Alerts and Advocacy' started by eve789, May 13, 2012.

  1. eve789

    eve789

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    I'm a fan of Patients Like Me, a Cambridge, MA company that has taken several patient communities by storm.



    I don't know if there's been previous discussion of this on this forum (if so, I was not able to find much). They are doing for crowd-sourced, phenotypic research what companies like 23andMe have done for crowd-sourced, genetic research.

    Again, I'm a total newbie here, but I've seen a lot of exchange of information about what kind of treatments have and have not worked for different patients with different symptoms, but no attempt to systematically collect or quantify the observational data that comes from all of this self-experimentation.

    Patients Like Me has tools for this, and has started collaborating with researchers to produce scientific publications (see this PLM study on ALS in Nature: http://www.nature.com/nbt/journal/v29/n5/abs/nbt.1837.html)

    Patients Like Me has a disease category called "CFS", one called "Fibromyalgia," and a combined CFS/ME/Fibromyalgia forum. One cannot choose "ME" as a disease on one's patient profile. My sense from looking at the CFS page: http://www.patientslikeme.com/conditions/27-chronic-fatigue-syndrome and the patient forum: http://www.patientslikeme.com/forum/fibromyalgia/topics is that the typical, big tent definition is being used, and one that may not be as helpful for research.

    I think we should petition Patients Like Me to:

    1) Create a disease category called myalgic encephalomyelitis which patients can select
    2) That the International Consensus symptoms being explicitly used in the description and not the more vague: Chronic Fatigue Syndrome which may also be known as Myalgic Encephalomyelitis (ME) is characterized by persistent or recurrent fatigue, diffuse musculoskeletal pain, sleep disturbances, and subjective cognitive impairment of 6 months duration or longer.
    3) That they use language that explicitly distinguishes CFS from ME in their description
    4) That if they manage to do it, we all record our symptoms and experiments with conventional and alternative medicine there
    5) Then maybe one day, top ME researchers will be able to collaborate with them in the rapid testing of potential therapies.

    Email Ben and Jamie Heywood:
    bheywood@patientslikeme.com
    jheywood@patientslikeme.com
     
    taniaaust1 likes this.
  2. Jenny

    Jenny Senior Member

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    London
  3. eve789

    eve789

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    So I just set up a petition here:

    http://www.change.org/petitions/pat...parate-category-for-myalgic-encephalomyelitis

    Before trying to drum up support for it, I'd love anywhere here who is interested to help edit or offer suggestions for the supporting text:





     
  4. taniaaust1

    taniaaust1 Senior Member

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    Maybe add into that as they probably dont realise, that unlike CFS, ME is historically known for it's epidemics among communites (or something like that.. to make them realise its its more of an actual disease).



    That part is all making it sound like ME people just have all the same symptoms people think CFS people do and you here are talking about CFS studies. This part isnt at all making it sound like ME is different to CFS .. hence I suggest to leave it out.

    Maybe in your post.. you could focus more on the kinds of symptoms often seen in ME.. eg seizures, paralyses, loss of sight, vasculitis, tremors , postural orthostatic tachycardia syndrome etc etc .. There are so many symptoms ME people get which arent usually connected to CFS, which you could use to help distinguish, they are probably different illnesses and not all that alike... along with them having different definations and ME happening also in outbreaks.

    best luck.. i hope you get the petition going.
     
  5. Valentijn

    Valentijn Activity Level: 3

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    Hi Eve. It's very hard to read the text you wrote against a dark background. I suggest sticking to the default text color, and just using the "Quote" function.
     

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