BHC recognizes the toll and the challenges these diseases present to care partners and family members. On this page, BHC provides resources devoted to help you with knowledge, support, and skills necessary to navigate this journey.
Care Partner and Loved Ones Resources
ME/CFS Crash Survival Guide
Description:
This guidebook contains information on how to assist the pw ME/CFS meet their critical needs during a crash, and also provides adaptive ways to conserve energy in everyday living with ME/CFS.
While this asset addresses ME/CFS, the content and concepts can be applied to other debilitating chronic illnesses such as FM, Long COVID, and orthostatic intolerance (OI). Access it here!
ER and Urgent Care Considerations for ME/CFS
Description:
This handout provides basic advice and medical/scientific information about ME/CFS that can inform medical decisions in urgent, emergent, or hospital settings. Each page builds upon the next and has been separated for ease of review. Download it here.
Guide for How to be a Demanding Diplomat as a ME/CFS Caregiver
Description:
Caring for an individual with severe or very severe ME/CFS requires special knowledge and communication skills to manage medical care and the associated logistics. Galen Warden shares insightful and practical recommendations in her presentation, “How to Be a Demanding Diplomat as a Severe ME/CFS Caregiver.” This guide is a summary of her informative presentation. We recommend watching the video presentation or reading the transcript. Download the guide here.
Caregiver Mental Health Workbook
Description:
Like a good friend sharing a little wisdom they’ve earned the hard way, Galen shares what she’s learned on her own path to mental wellness as the caregiver for her adult son with severe/very severe ME/CFS. Questions and empty space for notes turn this handout into a workbook for anyone pursuing their own mental health journey. Download the workbook here.
Health and Activities of Daily Living Tracking Form
Description:
Amy Mooney, MS OTR/L created the following two summary sheets that she uses with her occupational therapy patients. It helps to track symptoms, functional performance, and keep general information in order. Review the information over time to analyze progress and see how interventions may have helped or hindered functional performance. These can also serve as documentation for providers to show impairment and may be supportive in disability applications.
Believing the Loved One
Description:
Written from a therapist’s perspective, this one-page letter addresses the importance of believing and validating the loved one’s experience with chronic illness.
Insights into My Chronic Illness
Description:
Written from the perspective of an individual with chronic illness to a caregiver, friend, spouse, etc. This letter provides insight into the patient experience and how you can support them.
What Does Brain Fog Feel Like?
Description:
Written from the perspective of one man with very severe ME/CFS, this blog post gives insight into what mild to severe brain fog can feel like. Please note that while this may not represent every individual’s experience, this personal account provides insight into a patient experience and why healthcare professionals, researchers, and carers need to take a person/patient-specific approach to care and support.
Living With A Partner Who Has ME/CFS and FM Part 1: Husbands
Description:
Chronic illness and marriage is a complicated combination. In this recorded Education Meeting, the panelists openly and honestly speak about the challenges, hardships, blessings, and lessons learned from their perspective. This is one of our most popular videos. (March 2017)
Presented by: BHC
Living With A Partner Who Has ME/CFS and FM Part 1: Wives
Description:
Chronic illness and marriage is a complicated combination. In this recorded Education Meeting, the panelists openly and honestly speak about the challenges, hardships, blessings, and lessons learned from their perspective. (April 2017)
Presented by: BHC
Caregiver Wisdom
Description:
Caregiver Wisdom brings together wisdom, resources, and connection to caregivers of loved ones with debilitating chronic illnesses like ME/CFS and Long COVID. Services also include a free support group that takes place the first Sunday of each month. Access the website here.
Presented by: Caregiver Wisdom
Caring for People with Myalgic Encephalomyelitis
Description:
#MEAction has crowdsourced this advice from caregivers who care for both adults and children with ME. Gain knowledge, perspective and skills to better equip you to navigate the long, convoluted journey of this disease.
Presented by: #MEAction Network
For Caregivers
Description:
Whether you are a friend, partner, or parent to someone with ME/CFS this is a concise guide to help you on this challenging journey. This link also includes a resource guide for recommended further reading.
Presented by: AMMES
Caregiver Action Network
Description:
This resource is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age.
Presented by: Caregiver Action Network
Support Groups for Care Partners and Loved Ones
#MEAction Caregivers Support Group
#MEAction Support Groups
Lucinda Bateman, MD, is a renowned clinician, researcher, and educator. Her Johns Hopkins University Medical School training instilled an approach to care that she has employed throughout her career - the patient comes first and the unknown or unexplained does not equate to a lack of proper and compassionate care. Since starting her own practice in 2000, she has served on six boards or committees, been the principal investigator for 45 studies, authored/coauthored 40 journal articles, served as adjunct instructor and adjunct assistant professor in the University of Utah Departments of Preventative Medicine, Internal Medicine, and Anesthesiology, and lectured around the world.