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 on The Death Threat Myth Exposed
- Patty Hirst on The Death Threat Myth Exposed
- Toni Bernhard on The Death Threat Myth Exposed
- Lolly on The Death Threat Myth Exposed
- Jennie Spotila 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: crash
How You Doin’?
How are you in these quaran-times, my friends? My husband and I are doing everything possible to avoid infection because we know how scary COVID-19 can be. I have not left my house for anything except short walks in more … Continue reading →
Posted in Occupying
|
Tagged coping, covid-19, crash, family, help, living with, pain, pandemic, PEM, quarantine, sars, suffering, volunteer
|
5 Comments
Sacrifice
I’ve lost count of the number of masks I’ve sewn. More than sixty, at least. I was sewing even before the CDC recommended that everyone wear masks, because I knew that my husband and I needed them. When the official … Continue reading →
Posted in Occupying
|
Tagged cop, covid-19, crash, help, pain, PEM, quarantine, sars, social isolation, volunteer
|
6 Comments
Better Late Than Not At All
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
Viral
I had it all under control. After coming down with a virus (mild flu?) in January, I got the message and seriously scaled back my activity. Joe Landson, Denise Lopez-Majano, and Claudia Goodell all came through for me in a … Continue reading →
Posted in Occupying
|
Tagged coping, crash, infections, living with, occupy, post-exertional malaise, suffering
|
20 Comments
Guest Post: Frustration
I continue to struggle with the crash from hell, but Denise Lopez-Majano has graciously provided a guest post. Her thoughts on ME-frustration are right on target for me this week! As a caregiver for her two adult sons, Denise is … Continue reading →
Posted in Occupying
|
Tagged coping, crash, frustration, living with, occupy, post-exertional malaise, speaking out, stress, suffering
|
29 Comments
The Finger
Last week, my body gave me the finger. I can’t even say I didn’t deserve it. After more than 19 years, I still don’t always listen to my body and this makes her very, very angry with me. I’ve previously … Continue reading →
Posted in Occupying
|
Tagged coping, crash, living with, occupy, post-exertional malaise, suffering
|
44 Comments
I Thank You
When I uploaded my Crash Day 3 video on Monday, I was scared. In fact, I almost didn’t do it. I can’t control the fact that I have crashes, but I can control who sees me that way. Like most … Continue reading →
Posted in Advocacy, Occupying
|
Tagged action, coping, crash, FDA, living with, occupy, post-exertional malaise, speaking out, suffering
|
5 Comments
Imperfect
I’ve had a craptastic week. Three crash days, including one that involved a three hour “nap.” I don’t understand what triggered these crash days, but I never do. Usually, crash days take me by surprise because whatever activity I’ve been … Continue reading →
Posted in Occupying
|
Tagged anaerobic, coping, CPET, crash, friends, heart rate monitor, living with, occupy, pacing, post-exertional malaise, support
|
11 Comments
What a Crash Looks Like
On the suggestion of my friend Claudia, I recorded a video of myself on the third day after the FDA Drug Development Workshop on ME and CFS. I had to swallow my pride to do this. Even some members of … Continue reading →