Subscribe to Blog via Email
Pages
-
Recent Posts
Recent Comments
- Trial By Error: Jennie Spotila Tracks Down–and Busts–an Old Tale About “Death Threats” from Patients – The York ME Community on The Death Threat Myth Exposed
- Jennie Spotila on The Death Threat Myth Exposed
- Lisa Petrison on The Death Threat Myth Exposed
- Trial By Error: Jennie Spotila Tracks Down–and Busts–an Old Tale About “Death Threats” from Patients on The Death Threat Myth Exposed
- Patty Hirst on The Death Threat Myth Exposed
Archives
- April 2021
- March 2021
- February 2021
- December 2020
- November 2020
- October 2020
- September 2020
- July 2020
- June 2020
- April 2020
- March 2020
- February 2020
- January 2020
- November 2019
- August 2019
- June 2019
- May 2019
- April 2019
- March 2019
- February 2019
- January 2019
- November 2018
- October 2018
- September 2018
- August 2018
- July 2018
- June 2018
- May 2018
- April 2018
- March 2018
- February 2018
- January 2018
- December 2017
- November 2017
- October 2017
- September 2017
- August 2017
- July 2017
- June 2017
- May 2017
- April 2017
- March 2017
- February 2017
- January 2017
- December 2016
- November 2016
- October 2016
- September 2016
- August 2016
- July 2016
- June 2016
- May 2016
- April 2016
- March 2016
- February 2016
- January 2016
- December 2015
- November 2015
- October 2015
- August 2015
- July 2015
- June 2015
- May 2015
- April 2015
- March 2015
- February 2015
- January 2015
- December 2014
- November 2014
- October 2014
- September 2014
- August 2014
- July 2014
- June 2014
- May 2014
- April 2014
- March 2014
- February 2014
- January 2014
- December 2013
- November 2013
- October 2013
- September 2013
- August 2013
- July 2013
- June 2013
- May 2013
- April 2013
- March 2013
- February 2013
- January 2013
- December 2012
- November 2012
- October 2012
- September 2012
- August 2012
- July 2012
- June 2012
- May 2012
- April 2012
- March 2012
- February 2012
Meta
Tags
- accountability
- action
- anaerobic
- biomarkers
- case definition
- CBT
- CDC
- CFIDS Association
- CFSAC
- coping
- CPET
- DHHS
- disability
- drugs
- exercise
- family
- FDA
- funding
- GET
- government
- grants
- IOM
- living with
- Millions Missing
- NIH
- occupy
- orthostatic intolerance
- P2P
- pacing
- pain
- pathogenesis
- politics
- post-exertional malaise
- priorities
- psychosocial
- recommendations
- researchers
- RFA
- RFA Ticker
- speaking out
- spending
- stress
- suffering
- testimony
- treatment
Tag Archives: loss
#MillionsMissing 2019
We are the disappeared The vanished The millions missing Blink Snap your fingers Gone Do you miss us? Does anyone ask what happened to us? Does it cross your mind that we are still very much alive? We think of … Continue reading →
Posted in Advocacy, Occupying
|
Tagged accountability, disability, living with, loss, Millions Missing, politics, protest, speaking out, suffering
|
16 Comments
The Best Holiday Ever
Getting a puppy was not in the plan. My husband and I already had a dog (Fargo) and a cat (Lucas). The plan was for my parents to pick out a dog, and I just went along to help since … Continue reading →
Posted in Occupying
|
Tagged adapting, coping, disability, dog, doggo, family, grief, joy, life, living with, loss, love, personal, pets, pupper, shining light, strength
|
20 Comments
One Dance: Millions Missing 2018
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
Unrest: Movie Review
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
Guest Post: Sickaversary
My friend, Jenny R, wrote these profound words about her sickaversary. 10 years and 4 days ago today I got sick and never got better. I wrote this to commemorate it: I want to write something incredibly profound and moving … Continue reading →
Posted in Occupying
|
Tagged coping, grief, living with, loss, occupy, speaking out, stress, suffering
|
6 Comments
Still #MillionsMissing
Today is another, larger #MillionsMissing protest, and I am missing it. I miss a lot of things. One of the best things I ever did in my life was to drive cross country, camping in national parks. It changed my … Continue reading →
Posted in Advocacy, Occupying
|
Tagged accountability, action, biomarkers, coping, drugs, funding, government, grants, living with, loss, Millions Missing, NIH, occupy, politics, speaking out, spending, suffering, treatment
|
14 Comments
“Take Care Of Each Other”
“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 →