Tag Archives: suffering

How To Represent

Posted on July 16, 2018 by Jennie Spotila

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

Talk To FDA About Chronic Pain

Posted on June 1, 2018 by Jennie Spotila

The FDA wants to hear from people with chronic pain, and is hosting a meeting on July 9, 2018 to collect public input. I have chronic pain, and I know that many of you do as well. This meeting is … Continue reading →

Posted in Advocacy | Tagged action, coping, drugs, FDA, government, living with, occupy, pain, pain management, patient, patients, PFDD, speaking out, suffering, testimony, treatment | 5 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

All The Time and None At All

Posted on April 25, 2018 by Jennie Spotila

Dr. Francis Collins, in answering a question about ME research on April 20th, said that NIH recognizes and empathizes with our suffering and our “frustration that so little is known.” Then he dropped some knowledge. Dr. Collins said, “Research, done … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged accountability, action, anger, biomarkers, blame, funding, government, grants, living with, Millions Missing, NIH, noncompliant, occupy, politics, priorities, researchers, RFA, speaking out, spending, suffering, transparency | 58 Comments

“Take Care Of Each Other”

Posted on January 26, 2018 by Jennie Spotila

“Take care of each other.” Those were the closing words in Anne Ortegren’s suicide letter. Anne’s death came as a shock to many of us, myself included. Anne was a friend and long-time supporter of my work. She made a … Continue reading →

Posted in Commentary, Occupying | Tagged acceptance, adapting, community, coping, crisis, death, dying, faith, family, friends, grief, honesty, hope, isolation, living with, loss, love, occupy, pain, persistence, self-care, speaking out, strength, suffering, suicide, support | 38 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

More Thoughts on Suicide

Posted on November 16, 2017 by Jennie Spotila

Last week, Johanna Haban provided some important resources and information for people with ME who are overwhelmed or are contemplating suicide. This topic is complicated and very important to discuss, so Johanna and I spoke further about issues related to … Continue reading →

Posted in Occupying | Tagged community, coping, crisis, death, dying, guest post, honesty, hope, living with, occupy, pain, psychosocial, resources, speaking out, stress, suffering, suicide, support | 9 Comments

Crisis and Suicide

Posted on November 5, 2017 by Jennie Spotila

The list of people with ME who have taken their own lives is too long. Fortunately, there is help available for anyone in crisis, and their loved ones. There are many issues to discuss about suicide and end of life, … Continue reading →

Posted in Occupying | Tagged community, coping, crisis, death, dying, help, honesty, living with, occupy, pain, psychosocial, resources, speaking out, stress, suffering, suicide, support | 17 Comments

Tag Archives: suffering

How To Represent

Talk To FDA About Chronic Pain

The NIH Pilot Program: What We Can Do

One Dance: Millions Missing 2018

All The Time and None At All

“Take Care Of Each Other”

Expectations

Better Late Than Not At All

More Thoughts on Suicide

Crisis and Suicide

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