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Author Archives: Jennie Spotila
The 2019 NIH Funding Fact Check
NIH claims to have spent $15 million on ME/CFS research in 2019. However, my examination of the details shows that NIH actually spent $13 million, which means NIH is exaggerating its spending by 14%. This gap between reality and NIH’s … Continue reading
Posted in Advocacy, Research
Tagged accountability, accuracy, action, activism, funding, government, grants, NIH, priorities, researchers, RFA, speaking out, spending
11 Comments
David Tuller: Making Progress Together
For the past four years, I have supported David Tuller’s investigative journalism through his crowdfunding campaigns. I urge you to join me in supporting his current fundraiser so that he can continue his work. Five years ago this month, David … Continue reading
Posted in Advocacy, Commentary
Tagged accountability, action, CBT, CDC, exercise, funding, GET, PACE, politics, psychogenic, psychosocial, speaking out
Comments Off on David Tuller: Making Progress Together
How Pandemic Response Measures Harm People With Disabilities
The coronavirus pandemic is reshaping all our lives. With more than six million confirmed infections in the United States, we are living through a seismic cultural event impacting how we work, learn, socialize, and function. For people with disabilities, like … Continue reading
Posted in Commentary
Tagged ableism, accountability, activism, adapting, bias, coping, covid-19, crisis, disability, masks, pandemic, policy, priorities, public health, social isolation
10 Comments
Always Another Chance
Toni Bernhard has published a new book, How To Be Sick: Your Pocket Companion. Whether you have read Toni’s other books or not, I think you will find this one to be the perfect fit. This book is not a … Continue reading
Posted in Commentary
Tagged book, book review, Buddhism, coping, experiment, living with, mindfulness, occupy, pacing, spiritual, suffering, Toni Bernhard
4 Comments
How To Stay At Home
One thing I have learned during the COVID-19 pandemic is that people with chronic illness have a lot to teach healthy people. We have the skills and hard-earned experience of coping with social isolation and restrictions on what we want … Continue reading
Posted in Commentary
Tagged adjusting, coping, covid-19, family, help, infections, joy, living with, masks, pandemic, PEM, plan ahead, preparation, public health, quarantine, sars, self-care, sick, social isolation, suffering, virus, volunteer
2 Comments
NIH Funding for ME in 2020: Falling Flat
NIH funding for ME/CFS research should be increasing each year. Everyone agrees that this is needed. Instead, 2020 funding has flatlined. Worse yet, we are in danger of falling off several cliffs looming ahead. Image credit: Off the Charts, AJN … Continue reading →