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

Article by Caroline Christian
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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, “It 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/