Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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The Names of Research Centres

Discussion in 'General ME/CFS News' started by Persimmon, Dec 19, 2011.

  1. Nielk

    Nielk

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    The reason why the name IS important is because it all matters who the patient cohorts are that these centres are studying. If you don't have a defined group, the results will not mean anything. This has been a problem with previous studies. Which cohorts did they chose? Which definition of ME or CFS are they using? That is at the heart of what's important.
    If they study neuroimmune diseases, this could be a group of people that encompass ME, CFS, MS, Parkinsons etc.. How would the results be refined and usefull to us?
     
  2. Tristen

    Tristen Senior Member

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    Northern Ca. USA
    Exactly! When I take a good anti-inflammatory, the first changes are CNS. My vision clears, I can see, read, concentrate. The Tinnitus clears, I can feel, sleep better, dream, etc...... Obviously a lot of the symptoms are brain inflammation. Personally, I believe that starts in the Gut, aka, second brain.
     
  3. denlander

    denlander

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    new ME/CFS centers

    We found it ineresting that once again Phoenix Rising has not listed the Mount Sinai ME/CFS Center in the "new " list. We are sure it is an oversight .
    Not only has Cort not listed the Center but has studiously avoided any mention of its activities. Mount Sinai New York has attracted the stongest group of researchers in the Nation , Schadt,Singh and Merad to join Enlander. Sinai is not a minor college but a major medical school.
    Joy Houndlow
    Volunteer, Mount Sinai
     
  4. Nielk

    Nielk

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    Hi Cort,

    Why not do a write up article on the front page news about the new Mt. Sinai ME/CFS Center in NY like you did so well for Dr. Nancy Klimas joining the NSU?
    I enjoyed reading about Dr. Klimas' article but, the Mt. Sinai's new ME/CFS center news came out before the announcement from Nancy.
    I think you have contacted Dr. Enlander before and if you need a liaison, I would be more than happy to get involved.

    Thanks,
    Gabby (Nielk)
     
  5. Nielk

    Nielk

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  6. The one exception being the Stichting ME Research in The Netherlands, I guess. Starting up the first ME cohort in the country.
     
  7. Persimmon

    Persimmon Senior Member

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    Just noticed - Montoya has changed the name of his ME centre.

    It's now called the Stanford Myalgic Encephalomyelitic / Chronic Fatigue Syndrome Initiative. They abreviate this as the Stanford ME/CFS Initiative.

    It used to be called the Stanford Chronic Fatigue Initiative. They are, however, retaining their old web address www.chronicfatigue.stanford.edu

    This name change presumably reflects Montoya making progress in persuading his Stanford colleagues that ME (or at least ME/CFS) is a legitimate medical topic, distinct from chronic fatigue. Having got the senior Stanford geneticist Ron Davis on board must have been a major coup for Montoya in his campaign to win over skeptical colleagues.
     
  8. *GG*

    *GG* Senior Member

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    Concord, NH
    shannah likes this.

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