1. This site uses cookies. By continuing to use this site, you are agreeing to our use of cookies. Learn More.
  2. Our service provider will be patching their infrastructure against Meltdown attacks between 3am and 5am on Thursday the 18th. This will lead to a temporary disruption for a few minutes (hopefully)! More information
    Dismiss Notice
  3. Sign the petition in support of Graham's letter to NICE. Click here to see details
    Dismiss Notice

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 at 2:32 PM.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    310
    Likes Received:
    2,250
    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:
    https://themighty.com/2018/01/chronic-fatigue-syndrome-death-health-complications-suicide/
     

Share This Page