Tag Archives: truth

29

Posted on October 7, 2023 by Jennie Spotila

I got sick on October 6, 1994. Writing a memoir that spans almost three decades requires a lot of self-reflection, not only about what I’ve been through but about the choices I made, what I got wrong, and what I … Continue reading →

Posted in Occupying | Tagged anniversary, coping, grief, health, life, living with, occupy, persistence, personal, recovery, sick, sickaversary, strength, stress, suffering, triumph, truth | 11 Comments

Do We Ever Stop Counting?

Posted on October 6, 2021 by Jennie Spotila

I have been sick for twenty-seven years, today. My sickaversary gives rise to different feelings every year. Burdened. Triumphant. Heartsick. Contented. Marking the day, here with you or on my own, feels important. October 6th is the day my life … Continue reading →

Posted in Occupying | Tagged anniversary, balance, break, coping, family, grief, living with, occupy, persistence, personal, sick, sickaversary, strength, stress, suffering, tired, triumph, truth | 15 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

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

Better Late Than Not At All

Posted on November 23, 2017 by Jennie Spotila

Last night, I was really struggling to come up with anything to be grateful for. I can’t say that no one in our family died this year. I can’t say my husband is getting closer to returning to work. I … Continue reading →

Posted in Occupying, Uncategorized | Tagged balance, coping, crash, disability, family, gratitude, grief, living with, occupy, persistence, personal, strength, stress, suffering, truth | 16 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

23 and ME

Posted on October 6, 2017 by Jennie Spotila

May the depths you have reached hold you still – John O’Donohue Twenty-three years ago today, I woke up with a sore throat. I went to work, and within a few hours I had a high fever and could barely … Continue reading →

Posted in Occupying | Tagged anniversary, balance, break, coping, done, family, health, living with, occupy, persistence, personal, resist, sick, sickaversary, speaking out, strength, stress, suffering, tired, triumph, truth, victory | 43 Comments

CFSAC Public Comment, January 2017

Posted on January 18, 2017 by Jennie Spotila

I prepared comments for the January 13, 2017 CFS Advisory Committee meeting, but when my time arrived I decided to wing it. Below is my best reconstruction of what I said, a mixture of my prepared and spontaneous remarks. Start … Continue reading →

Posted in Advocacy, Commentary | Tagged action, CDC, CFSAC, DHHS, drugs, education, FDA, government, healthcare, medical education, NIH, occupy, politics, priorities, recommendations, researchers, speaking out, stakeholders, suffering, testimony, treatment, truth | 20 Comments

The Government Attitude Needed

Posted on November 22, 2016 by Jennie Spotila

Government/advocate interactions frequently happen on a public stage, where everyone is rightly careful about what they say. Sometimes, though, we can get access to behind the scenes communication. In emails that the authors probably believed would remain private, we can … Continue reading →

Posted in Advocacy, Commentary, Occupying | Tagged accountability, action, CFSAC, DHHS, distrust, FOIA, government, NIH, P2P, politics, recommendations, speaking out, stereotypes, truth | 17 Comments

A Big Helping of Defamation

Posted on November 26, 2014 by Jennie Spotila

I’m going public with an incident that exposes the dirty underbelly of the ME/CFS community. It’s not the first time I’ve been personally targeted, and surely won’t be the last. But bullying and defamation directed at me, or any other … Continue reading →

Posted in Advocacy, Commentary | Tagged government, living with, occupy, P2P, speaking out, truth | 58 Comments

Tag Archives: truth

29

Do We Ever Stop Counting?

Protesting Per Fink

Expectations

Better Late Than Not At All

The Truth Is Not Always Nice

23 and ME

CFSAC Public Comment, January 2017

The Government Attitude Needed

A Big Helping of Defamation

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