New era for ME/CFS research as top cytokine study attracts media headlines
The immune systems of patients who have recently developed ME/CFS look markedly different from those who have been ill for much longer, according to a major new study from Drs. Ian Lipkin and Mady Hornig at Columbia University. This shift in immune function hadn’t been seen before.
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MAME has made CFSAC meetings accessible to people with disabilities

Discussion in 'General ME/CFS News' started by shrewsbury, Apr 1, 2010.

  1. shrewsbury

    shrewsbury member

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    Read how MAME has made CFSAC meetings accessible to people with disabilities. The story is in the April-May 2010 CCPD "AccessLetter"

    (thanks to David P who posted this to co-cure today)


    MAME (Mothers Against Myalgic
    Encephalomyelitis) is an umbrella group which
    advocates not only for people with CFS (PWCs), but
    also for people with related conditions such as
    Fibromyalgia and Multiple Chemical Sensitivity.
     
  2. Hope123

    Hope123 Senior Member

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    Thanks for posting this IF! I had heard a bit of this story but not the whole thing. This stood out in particular:

    Nearly 2000 people watched the video of
    the May 27-28, 2009 meeting within the first
    few weeks; thousands more have watched since,
    either from the NIH website or from copies on
    YouTube. The videos can also be viewed by CFS
    researchers, friends and family members of PWCs who
    might not be disabled but are unable to attend the
    CFSAC due to other commitments. Dr. Jones has
    pledged that all future CFSAC meetings will be
    videocast and archived.


    Stands out in stark contrast to earlier meetings where only a handful of people showed up to watch and meetings ended early because so few people showed up to testify. It really emphasizes the need for everyone to try to participate as possible, whether merely by watching live or archived videos, writing letters, testifying by phone, or going in person. Every individual can make a difference.
     
  3. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    NYC (& RI)
    Amen!

    __________
     

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