Tag Archives: suffering

CFSAC Comments, Terri Wilder

Editor’s note: Terri Wilder made these remarks at the May 18, 2016 meeting of the CFS Advisory Committee. I’m pleased to publish her complete comments, with her permission. For new readers, ME refers to myalgic encephalomyelitis, a neuroimmune disease.  Good … Continue reading

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Epic Eye Roll

I had a shocking experience at a doctor’s office yesterday. It was my first visit to his office for an issue unrelated to ME/CFS. After breezing into the room and making a sarcastic remark about the quality of doctors’ notes … Continue reading

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Grief: Too Many Words

When my mother died, I could not sculpt words around my grief. Even several months later, I still could not express how grief felt to me. Now, a year later, I find I have too many words to shape and … Continue reading

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Saying No

How To Live Well with Chronic Pain and Illness is Toni Bernhard’s latest book. I’ve reviewed Toni’s previous books (here, here, and here), but over the course of years, Toni has become one of my most beloved friends. So while … Continue reading

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A Year of Thanks

This year has been hard, y’all. HARD. Sometimes I think that my Mom’s death took a scoop of my soul along with her. And then just over six months later, my husband (my caregiver, my best friend, my everything) had … Continue reading

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21

October 6, 2015 was my 21st “sickaversary.” I know the date because the onset of ME/CFS in my case was so sudden and dramatic. Not a single doctor told me that I could be sick for years. Not a single … Continue reading

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A Miracle, and a Break

This year has been the most difficult of my life, starting with my Mom’s passing in January. Losing her was just the first in a cascade of bad news, and I made the decision to stop maintaining that laundry list … Continue reading

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Brian Vastag to Dr. Francis Collins

Yesterday, an open letter from science writer Brian Vastag to Dr. Francis Collins (Director, NIH) flashed around the ME/CFS social media-sphere like lightning. Then it spread among Brian’s high profile colleagues, like Martin Enserink and Carl Zimmer. Brian’s letter is … Continue reading

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Wheelchair – HELP!

I need a new wheelchair, and I need your help! I have used a manual chair for many years, relying on friends and family to push me around. But the chair gets caught in pavement cracks, has trouble going over … Continue reading

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Alone in the Woods

I’m happy to share this guest post from Joe Landson. Man, can I relate to this! Each of us patients has that one dear relative, friend, or acquaintance – the one who tells us, repeatedly, that we can do anything … Continue reading

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