Tag Archives: occupy

In Healthcare, Be Squeaky

Posted on August 13, 2018 by Jennie Spotila

As the saying goes, the squeaky wheel gets the grease. This is particularly true in healthcare, where you are dealing with big systems that don’t always talk to each other. Today, I will tell you the story of how I … Continue reading →

Posted in Advocacy, Occupying | Tagged accountability, action, doctors, Health Activist, health care, healthcare, living with, occupy, records, speaking out | 5 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

The NIH Pilot Program: Wait and See

Posted on May 21, 2018 by Jennie Spotila

MEAction has collected thousands of signatures on a letter to Dr. Francis Collins, asking for a meeting with him and a plan of action to attack the ME public health crisis. That request is all the more urgent because NIH … Continue reading →

Posted in Advocacy, Research | Tagged accountability, action, biomarkers, blame, case definition, DHHS, funding, government, grants, IOM, Millions Missing, NIH, occupy, politics, priorities, recommendations, researchers, RFA, speaking out, spending, treatment | 50 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

Return on Investment: David Tuller

Posted on April 7, 2018 by Jennie Spotila

When journalist David Tuller asked for crowdfunding in 2017 to support his research and writing on ME for a year, he had already demonstrated his commitment to a rigorous examination of the many problems and issues associated with the PACE … Continue reading →

Posted in Advocacy, Commentary | Tagged accountability, action, CBT, CDC, exercise, funding, GET, occupy, PACE, politics, post-exertional malaise, psychosocial, speaking out, treatment | 16 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

For Serious?

Posted on November 25, 2017 by Jennie Spotila

It’s time for another round of “How Stupid Is This?” That’s a game I just invented. There are no rules, and definitely no prizes. Trust me. It’s a great game. It’s even more fun if you read this whole post … Continue reading →

Posted in Advocacy, Commentary | Tagged accountability, CFSAC, DHHS, government, occupy, politics, speaking out, stupid, testimony | 39 Comments

Tag Archives: occupy

In Healthcare, Be Squeaky

Talk To FDA About Chronic Pain

The NIH Pilot Program: What We Can Do

The NIH Pilot Program: Wait and See

One Dance: Millions Missing 2018

All The Time and None At All

Return on Investment: David Tuller

“Take Care Of Each Other”

Expectations

For Serious?

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