Severe ME/CFS Caregiving: Q&A

Bateman Horne Center and Solve M.E. co-hosted Severe ME Caregiving webinar for the benefit of patients and caregivers navigating life with severe ME/CFS. It focuses on navigating health systems, role changes, daily care, caregiver mental health, and maintaining healthy relationships. The panel of experienced caregivers shared practical tips and resources.

This video shows the question and answer section at the close of the webinar.

Panelists include:
Kyle Kitzmiller, husband to a woman with Severe ME. (Physics Girl)
Amy Mooney, mother to a teen daughter with Severe ME.
Kim Moy, wife to a husband with Severe ME.
Galen Warden, mother to an adult son with Severe ME.

The content provided 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.

[ophefer]

I don't work any longer since a few years now. But when I was working full time and wondering what my illness was at the time I could not afford to see a doctor to save my energy due to waiting in waiting rooms, etc... to make sure I have enough energy for work for the next day. A minimum of at least 12hours sleep a night was crucial for me. On weekends I prepared freezer lunch box meals for the week to save that energy during the week preparing them. Fun activities on weekends were rare or short. After I'd get fired from jobs because I could not concentrate enough on my job I'd take advantage to see doctors more often but never found solutions year after year. When I'd eventually start a new job it had to be as close as possible to home because my 1st job ever was an hour away from home and realised that I'd sleep all the way on the public bus transport. Sometimes I missed my stop while sleeping. I eventually only started doing part time jobs. School days were also horrible making me sometimes feel stupid and developing anxiety issues throughout my life. Partner relationships failed failed and failed till I realised they just drain me out too much so I stay single now. I used to dream of making my own family but gave up on that. I'm in my 50's now. Sometimes I'd worry not to be able to work enough to one day have a decent pension. But who cares this illness will probably kill me before old age in any way. Today I thank all those involved in ME/CFS research and especially those that donate funds into this. It's just such a shame that people like Simon Wessely and his supporters has made my life much harder than what it could have been. For many years I often felt like doctors were just slamming the door in my face or trying to brainwash me. I guess they didn't know any better! But thank goodness that at least I finally got a diagnosis and survived because there were times when I seriously wanted to give up on life. I now live on social security benefits but might still loose them cause the system still seems to expect me do a work activity even though it makes me feel sick (Fatigue, PEM, brain fog, etc...) Life goes on for everybody but many still don't always realise what ME/CFS people go through.