(Anne's is a difficult story but it's a good story in a way because it demonstrates the full force of this illness. Anne's story is reminiscent of Jenn Brea, Jamison Hill and Mary Dimmock's son's stories. Each was a young adult with not just a good but perhaps an extraordinary life ahead of them, Read more [...]
"I do not hope for a cure or a radical positive change in my condition; instead I believe in the possibility of pleasurable moments." Carol Lefelt
I am overwhelmed by the large number of responses to my last piece about reaching the age of 70 and feeling that it might be time to stop my quest for Read more [...]
Opinions about the Whittemore-Peterson Institute post-XMRV run the gamut from appreciation to anger. In this prelude to the interview, which is not about those issues, I offer up some thoughts.
Every organization from the OMI to the CFIDS Association, from the Whittemore Peterson Institute Read more [...]
It was at about the six-month mark that I realized my case of mononucleosis from last year might be morphing into ME/CFS. It was a shocking thought.
I’d started lifting weights at 15. Annually, I spent more than 1,500 hours working out, and by the age of 22, I had devoted over 10,000 Read more [...]
I felt particularly sick for a long time before our trek out west from New Jersey– woozy and aching and listless – and liable to crash miserably after almost anything, like unloading the dishwasher or washing and blow-drying my hair.
Maybe, as my husband hypothesized, anticipation of the Read more [...]
My Shrinking Life - 19 years and Counting …. and Still Hopeful of a Reprieve! - Tasha's Story
This is a long and involved story of my journey with M.E. The reason behind it is to show the problems I’ve encountered dealing both with the illness itself and the medical profession which I Read more [...]
Christmas Week, 2013
Okay, so we all know the physical and emotional stresses for ME sufferers brought by the holidays. This year, I’m afraid, I added heaps more by agreeing to spend Christmas week in Hawaii at our time share with our children and now year-old grandson.
We have this timeshare Read more [...]
We humans define ourselves in terms of what we can DO. With CFS you have an existential crisis, cause you think, "If I can't DO, who or what AM I?"
I walk to the wooden cubbies in my school’s front office to pick up my mail. Usually my box is stuffed with notices, pamphlets, messages Read more [...]