Tag Archives: activism

Educating Doctors

Posted on November 11, 2018 by Jennie Spotila

The Philadelphia Inquirer recently published an article I wrote about educating doctors about ME. The article can be read here. This week, the Philadelphia County Medical Society is hosting a screening of the film Unrest, followed by a panel discussion … Continue reading →

Posted in Advocacy, Occupying | Tagged action, activism, advocacy, awareness, coping, diagnosis, doctors, healthcare, IOM, living with, medical education, occupy, represent, resources, respect, speaking out, unrest | 5 Comments

NIH Funding for ME Goes Down in 2018

Posted on October 21, 2018 by Jennie Spotila

Updated May 29 and October 16, 2019 with additional funding numbers. Fiscal year 2018 is over, so now we can answer the question of whether ME research funding at NIH would go up or down. As I predicted back in … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged accountability, action, activism, anger, blame, conference, council, funding, government, grants, Millions Missing, NIH, occupy, politics, priorities, researchers, RFA, speaking out, spending, working group, workshop | 30 Comments

Protesting Per Fink

Posted on October 12, 2018 by Jennie Spotila

#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

The NIH Pilot Program: What We Can Do

Posted on May 28, 2018 by Jennie Spotila

As I discussed in Part One of the NIH Pilot Program, NIH thinks that the three (and only three) Collaborative Research Centers are seeds to generate interest in ME research, and will wait for more research applications to come in … Continue reading →

Posted in Advocacy, Occupying | Tagged accountability, action, activism, awareness, blame, CFSAC, funding, government, grants, living with, Millions Missing, NIH, occupy, politics, priorities, recommendations, researchers, RFA, speaking out, suffering, testimony, treatment | 18 Comments

One Dance: Millions Missing 2018

Posted on May 12, 2018 by Jennie Spotila

I was never a talented dancer, but I loved it. I quit ballet lessons when I was in the 3rd grade because it was hard. I struggled to learn the simple choreography in school musical productions. I never learned to … Continue reading →

Posted in Advocacy, Occupying | Tagged accountability, action, activism, anniversary, coping, family, funding, government, grants, grief, living with, loss, medical education, Millions Missing, NIH, occupy, politics, post-exertional malaise, priorities, speaking out, spending, suffering, treatment | 23 Comments

Expectations

Posted on January 6, 2018 by Jennie Spotila

Unrest, Jen Brea’s documentary about ME, will be shown on PBS stations around the United States on Monday night – January 8th. The film is already available worldwide, and is short-listed for an Oscar nomination (my review of the film … Continue reading →

Posted in Advocacy, Commentary, Occupying | Tagged accountability, action, activism, advocacy groups, anger, awards, awareness, community, coping, fierce, film, frustration, government, honesty, living with, media, Millions Missing, occupy, politics, press, publicity, represent, resist, self-care, speaking out, stigma, suffering, team work, triumph, truth, unrest, victory | 27 Comments

The Truth Is Not Always Nice

Posted on November 1, 2017 by Jennie Spotila

My parents used to tell me, “If you can’t say something nice, then don’t say anything at all.” But they also raised me to tell the truth, especially when speaking to authority. I have to say some true things today, … Continue reading →

Posted in Advocacy, Commentary | Tagged accountability, action, activism, advocacy, advocacy groups, blame, conspiracy, fatigue, living with, nice, noncompliant, occupy, PACE, pejorative, politics, priorities, researchers, speaking out, stereotypes, tired, truth, voice, Walitt | 27 Comments

Unrest: Movie Review

Posted on September 12, 2017 by Jennie Spotila

Spoiler alert: This review discusses some specific scenes from Unrest. Edited to add: No, really! There are SPOILERS here! If you want to see and experience the film with a blank slate, then go see the film and come back … Continue reading →

Posted in Commentary, Occupying | Tagged activism, advocacy, coping, family, film, gratitude, grief, living with, loss, love, Millions Missing, movie, occupy, orthostatic intolerance, pacing, pain, post-exertional malaise, review, speaking out, suffering, testimony, treatment, unrest | 15 Comments

Funding Unrest

Posted on August 12, 2017 by Jennie Spotila

Four years ago, I wrote that Jen Brea’s film, then titled Canary In A Coal Mine, could be a defining moment in ME advocacy. Today, we stand on the threshold of a watershed moment for our disease, and Jen is … Continue reading →

Posted in Advocacy, Occupying | Tagged action, activism, advocacy, film, fund raising, Kickstarter, Millions Missing, NIH, occupy, speaking out, suffering, unrest | 11 Comments

NIH Attitudes Affect Policy: A Story In Two Parts

Posted on June 27, 2017 by Jennie Spotila

The current situation for ME research at NIH is still a problem, despite the fact that the RFAs will increase spending on ME by a significant percentage. I say this based on two things: what the ME field needs to … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged accountability, action, activism, advocacy, anger, blame, Centers of Excellence, funding, government, mental illness, NIH, occupy, politics, psychosocial, researchers, RFA, speaking out, stereotypes | 45 Comments

Tag Archives: activism

Educating Doctors

NIH Funding for ME Goes Down in 2018

Protesting Per Fink

The NIH Pilot Program: What We Can Do

One Dance: Millions Missing 2018

Expectations

The Truth Is Not Always Nice

Unrest: Movie Review

Funding Unrest

NIH Attitudes Affect Policy: A Story In Two Parts

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