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Holding On to Hope After a Loss From the ME/CFS Community

Discussion in 'General ME/CFS news' started by Sly Saint, Jan 13, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Article by Caroline Christian
    Yesterday I woke to a blue rose. I should have known something was wrong when there was very little activity in my favorite ME/CFS groups on Facebook. Blue rose days are like that. The community retreats in silence and grief on these days. We are afraid to admit what we all know: ME/CFS can and does kill. Or, according to author Julie Rehmeyer, β€œIt is the neglect of ME that kills.”

    A blue rose indicates that someone has died in the ME/CFS community. On these days many of us replace our profile pictures on Facebook with a picture of a blue rose in honor of a life lost prematurely, and to raise awareness about the seriousness of this illness. We have lost far too many beautiful and talented souls to this disease – including those who spent what precious energy they had doing advocacy work to raise awareness about the fact that we still do not have FDA-approved tests and treatments.

    Despite not knowing the cause of ME/CFS, doctors often say with authority that you cannot die from this disease. How can they be so certain when so little is known?"

    rest of article here:

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