Reflections on the 2024 Mast Cell Masterminds Conference By Melanie Hoppers, M.D. Last month, I had the opportunity to attend the 2024 Mast Cell Masterminds Conference in Oregon with my Bateman Horne Center colleagues, Dr. Brayden Yellman and Jennifer Bell, FNP-C....
Patient Education
Living with Orthostatic Intolerance (OI)
Living with Orthostatic Intolerance (OI) by Melanie Hoppers, MD If you’ve ever felt like simple, everyday activities drain your energy, you’re not alone. Living with orthostatic intolerance (OI) can turn activities like standing in line, taking a shower, or even...
The Story Behind “Life with a Low Battery: Living with ME/CFS”
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...
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...
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.
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.
Thoughts of Suicide
Chapter 12: When the body first becomes sick, it can be mentally, emotionally, and physically draining to the affected individual as the body struggles to regulate itself. This process can be incredibly overwhelming as the patient tries to find the vocabulary to describe what is happening to them.
Living with a Chronic Illness and Avoiding a Crash
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.
Nurture Yourself
Chapter 10: When living with ME/CFS, it may be tempting to let your mind fixate on what caused the illness or a crash. You may even feel yourself slipping into a state of self-blame. Simply put, this is not helpful to your crash recovery and is not supportive when living with the disease.
Activities of Daily Living
Chapter 9: Activities of daily living, known as ADLs, are tasks that involve self-care. Common ADLs include personal hygiene, bathing, toileting, dressing, eating, sleeping, and moving around in our environments. These tasks are often carried out without awareness of the energy demand that can be placed on our bodies while performing the task.