ME/CFS has a broad spectrum of severity, with some able to work while others require total care and support. People living with Severe ME are often confined to their beds and require assistance with basic daily activities such as eating or bathing. Their symptoms can be exacerbated by light, sound, and movement, and some may require round-the-clock care. These severe symptoms can limit access to medical care and support, leading to isolation from family and friends. About 25% of people with ME/CFS are severely ill and bedbound as a result of their illness. For many, there is a pattern of relapse and remission.
This four-part webinar series presented by Solve M.E. and the Bateman Horne Center will feature medical professionals, legal experts, scientists, and care partners discussing tips for caregiving, legal perspectives on individual rights, strategies for addressing treatment challenges for medical providers, and the latest research breakthroughs impacting people with Severe ME.
While this series is focused on Severe ME, the information shared will be relevant to other severe chronic illnesses, as well as people with moderate to mild ME/CFS, Long Covid, and other infection-associated chronic conditions and illnesses (IACCIs).
Each webinar takes place from 10-11 am PT (11 am – 12 pm MT).
Topics and dates for the series are:
• October 9: Caregiving
• November 13: Legal rights
• December 4: Medical care
• January 15: Research
The first webinar in our series focuses on the multifaceted challenges faced by those caring for severe ME/CFS patients and emphasizes the impact of chronic illness on entire support systems. A panel of experienced caregivers will explore navigating healthcare systems, coping with ambiguous loss, and maintaining healthy relationships. The panelists will provide valuable insights into balancing self-care with caregiving responsibilities and offer practical strategies for maintaining mental well-being. This event aims to provide caregivers with tools and support for their crucial roles.
Join BHC Deputy Executive Director and Education Director, Tahlia Rushcioni as she moderates a panel of experienced caregivers with unique insights to share with the community.
Panelists:
Galen Warden, mother to an adult son with Severe ME
Amy Mooney, mother to a teen daughter with Severe ME
Kim Moy, wife to a husband with Severe ME
Kyle Kitzmiller, husband to a woman with Severe ME (American science communicator Dianna Cowern aka YouTuber “Physicsgirl”)
Register for one or more of the events in the series here:
https://us02web.zoom.us/webinar/register/WN_YjCfUvHiQnmuAG6yV3jORw
The content provided by Solve M.E. and the Bateman Horne Center in this webinar is for informational purposes only and does not constitute legal or medical advice. Viewers are encouraged to consult with qualified legal or medical professionals for specific advice tailored to their individual circumstances.
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