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Author Archives: Jennie Spotila
Protesting Per Fink
#MEAction New York is holding a protest at Columbia University on Saturday, October 20, 2018 against the misinformation about ME that Dr. Per Fink is spreading to New York medical providers at the 4th Columbia Psychosomatics Conference. Who is Per … Continue reading
Posted in Advocacy
Tagged accountability, action, activism, anger, antiscience, CBT, delusional, denial, discredited, exercise, GET, mental illness, Millions Missing, noncompliant, occupy, politics, post-exertional malaise, priorities, psychogenic, psychosocial, represent, researchers, resist, respect, speaking out, suffering, truth
27 Comments
Rest In Power, CFSAC
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) is dead. Both the website and the email listserv made the announcement on September 6th: “The charter for the Chronic Fatigue Syndrome Advisory Committee expired on September 5, 2018.” A sudden death under … Continue reading
Posted in Advocacy, Commentary
Tagged accountability, action, CFSAC, Congress, DHHS, government, living with, Millions Missing, occupy, politics, priorities, protest, recommendations, represent, resist, respect, speaking out, testimony, transparency
24 Comments
After The Afflicted Freak Show
Many people in the chronic disease community were anticipating Afflicted, the Netflix series about seven people with poorly understood illnesses. In light of Jamison Hill‘s appearance in the show, the ME community hoped to build on the success of Unrest … Continue reading
Posted in Commentary
Tagged ableism, accountability, coping, disability, family, invisible, living with, mental illness, Millions Missing, occupy, pain, prejudice, psychogenic, psychological, psychosocial, speaking out, suffering, visability
18 Comments
How Much Will NIH Spend in 2018?
Fiscal year 2018 is almost over, and I have calculated how much NIH is likely to spend on ME research this year. The short answer? Based on current numbers, I project a 17.6% decrease in NIH spending on ME/CFS research … Continue reading
Posted in Advocacy, Research
Tagged accountability, accuracy, action, funding, government, grant review, grants, Millions Missing, NIH, portfolio, priorities, researchers, RFA, speaking out, spending, transparency
13 Comments
NIH 2017 Funding Fact-Check
Today, we need to revisit and reconcile NIH’s funding numbers for FY 2017. NIH is reporting that it spent $15 million dollars on ME/CFS research last year, but this includes several non-ME/CFS studies. The truth is that NIH actually spent … Continue reading
Posted in Advocacy, Research
Tagged accountability, accuracy, action, categories, fatigue, funding, government, grant review, grants, NIH, portfolio, researchers, speaking out, spending, transparency
11 Comments
How To Represent
Last month, I had my first chance to serve on an FDA Advisory Committee as a Patient Representative. I had a lot to learn about the drug under consideration, but I also learned how to use my individual perspective to … Continue reading
Posted in Advocacy
Tagged abuse deterrence, action, drugs, engagement, FDA, government, opioid, pain, participation, patients, represent, representative, speaking out, substance abuse, suffering, treatment
13 Comments
How To Be Sick . . . Again!
Toni Bernhard has just published a second edition of her classic How To Be Sick, or as I like to call it: The Book That Will Make You A Better Human. I have relied on How To Be Sick since … Continue reading →