The Story Behind "Life with a Low Battery: Living with ME/CFS" I am thrilled to announce the release of our latest educational video, Life with a Low Battery: Living with ME/CFS. This video was created not just to educate, but to amplify the voices of those...
Long COVID
Honoring Our Illness Journey
Honoring Our Illness Journey Today I am going to talk about something important which is honoring our illness journeys. When we talk about honoring our illness journeys what does that mean? Honoring includes 2 things: 1) respect, and 2) esteem. I think these are two...
Slowly Dying
**Trigger Warning. This poem may be difficult to read for some individuals. Please take care. Here is a link to BHC's Crisis Resources page.** Slowly Dying I'm on earth, and I no longer feel like I'm living; instead, I'm slowly dying. It's like being in a...
How to Be a Demanding Diplomat as a Severe ME/CFS Caregiver
Galen Warden is the mother of an adult son with severe ME/CFS. Bateman Horne Center partnered with her to provide essential guidance on caring and advocating for individuals with ME/CFS. This blog post includes: Galen's video presentation Galen's presentation slides...
Long COVID Treatment Trial
This past summer, we completed an open-label, proof of concept trial using a combination of valacyclovir, the generic form of Valtrex, and celecoxib, the generic form of Celebrex to see if it improved symptoms in women sick with Long COVID. The combination of these...
Caregiver Guidance
Appendix 2: When someone you care about experiences a crash, it can be scary and leave you feeling helpless. This resource aims to equip you with knowledge and insights from caregiver-to-caregiver on ways to support and alleviate the suffering of the person experiencing the crash (referenced below as the patient).
Crash Care Kit Essentials
Chapter 11: While living with ME/CFS, it is vital to learn the art of preventing and minimizing PEM and a subsequent crash. While not in a crash state, familiarize yourself with resources that can assist you in conserving energy and apply these following concepts to your everyday life.
Brain Fog in ME/CFS and Long COVID
This week our paper about possible causes of brain fog in ME/CFS and Long COVID was published in Frontiers of Neuroscience. This study included a large group of ME/CFS patients, Long COVID patients, and matched healthy controls. We hypothesized that cognitive...
The Cost of ME/CFS: An OT’s Lived Experience
Occupational and physical therapists have traditionally been trained from a rehabilitation perspective to treat a wide or diverse range of medical conditions. Many principles of rehabilitation can be applied to various spectrums of chronic health conditions....
How the Basics of PT & OT Can Help People with ME/CFS
Sallie Rediske and Tahlia Ruschioni presented the new medical education series at the Reflections of ME/CFS, FM, and Long COVID awareness event on May 9th. We invited Sallie to write this guest post to accompany her presentation. Click here to view the video...
Travel and Crash Considerations
Chapter 14: Traveling, while wonderful, can put you at risk for a crash. The increased energy expenditure physically, cognitively, and emotionally can use up your energy reserves more quickly than you would think. Here are some tips that may help you have less chance of crashing and use your energy more slowly.
Making the Decision to Seek Emergency Care
Chapter 13: First and foremost, KEEP IT SIMPLE! It is not your job to diagnose what is wrong. If you or your caregiver think you should go to urgent care or the ER, then you should probably go.