Archive for Stories

Aug 8th – Honoring the Struggle of the Severely Ill People with ME/CFS

'An M.E. patient feels effectively the same every day as an AIDS patient feels two weeks before death.' Mark Loveless, Infectious Disease Specialist. Today, August 8th is Severely Ill ME Day, a day created by the 25% ME Group to acknowledge, honor and bring to light the tremendous struggle severely Read more [...]

More Musing on Malaise

If ‘malaise’ doesn’t adequately describe my dreadful condition after too much exertion, it does fit another consequence of ME/CFS. After so many years of trying to pace myself successfully (whatever that means, since my over-taxed level seems to change from week-to-week or even day-to-day), Read more [...]

Why Are Doctors Skeptical & Unhelpful about Chronic Fatigue Syndrome? Pt I

(Thanks to Julie for allowing Health Rising to reprint her original blog posted on The Last Word on Nothing) Eight years ago, collapsed on a neurologist’s examining table, I asked a naive question that turned out to be at the center of a controversy continuing to this day. I had just received Read more [...]

From International Traveler to 43 Square Meters: An ME/CFS Story From Sweden

(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 [...]

Is It Time To Give Up Trying Pt. II: Breaking the Addiction for a Cure

"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 [...]

Persisting Without Exception: An Interview with Andrea Whittemore-Goad

Prelude 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 [...]

Carrying That Weight: A Weightlifter’s Chronic Fatigue Syndrome Story

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. My Workouts 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 [...]

“Is it Time To Give Up Trying?” Thoughts at Age Seventy From ‘A Chronic Fatigue Syndrome Chronicle’

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 [...]