Category Archives: ME/CFS
Adrift
The millions of people developing Long COVID and ME/CFS constitutes a national emergency: We need a full governmental response that is well-funded and executed with urgency. You can help by contacting your representatives, senators,the White House press, or social media to amplify our voices. #MillionsMissing Continue reading
Millions Missing 2020
When a vaccine is found for COVID-19 and life begins to return to normal, what will you do when untethered from your home? Return to work, visit friends and family, go to the movies, travel? Those of us with #MyalgicEncephalomyelitis will remain … Continue reading
#MillionsMissing 2019
ME affects up to 2.5 million people in the United States, over 80% of them women. This disease causes profound neurological, immunological and metabolic dysfunction, resulting in a level of debility that is on average equivalent to congestive heart failure or multiple sclerosis. Yet the NIH funding for research remains abysmally low, approximately $5 per patient. Continue reading
Can You See M.E. Now?
Another year passes, and here I lay, on the couch or in bed, another one of the millions missing from participation in life due to myalgic encephalomyelitis. My family and friends must be tired of hearing about this relentless and … Continue reading
Change
Having Myalgic Encephalopathy, as with any chronic illness, you are forced to go through a continuous process of grief, for the unrelenting loss of one piece of your life after another. The actuality of ones past and present circumstance is an ever widening chasm. Continue reading
Unrest on PBS
For those of you who are in the United States, Unrest will be coming to PBS on January 8th. This documentary is a glimpse inside one woman’s journey with Myalgic Encephalomyelitis (ME), a misunderstood, misdiagnosed, pervasive and insidious disease. It is a love … Continue reading
Freedom! An ME/CFS Story
Today I bought an electric wheelchair and I’m overwhelmed. How is it possible to feel so many contradictory things at the same time? I cried, laughed, cried some more. The joy I felt, being able to get outside and “go … Continue reading
#MillionsMissing
Why the hiking shoes you ask. May 25th, 2016 is dedicated to the millions of Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) patients missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease. #MillionsMissing and I … Continue reading
Jewels of Endearment 