Are you a caregiver (spouse, partner, sibling, parent) of someone with Myalgic Encephalomyelitis? Are you looking for a community of support, or ways to get involved in advocating for people with ME?
#MEAction is excited to announce the launch of a new support network dedicated to caregivers. Please join us for our first caregivers call this Saturday, 24 March.
New York: 4 p.m.
California: 1 p.m.
London: 8 p.m.
Melbourne: 7 a.m.
This is the first of a series of calls dedicated to caregivers where will discuss topics important to caregivers. Examples include: How to care for our loved ones with ME when we are gone (e.g. special needs trusts, the Able Act, etc.)
We are only encouraging caregivers to attend the call, and welcome patients to get involved through our other support groups.
Before the call, please think about these questions:
- What are two needs caregivers have? (example – estate planning resources, socializing)
- What are two things you do to care for yourself? (listen to music, savor a drink)
Three mothers of grown children have banded together to create the support group: Bobbi Ausubel, whose 56-year-old daughter has been sick for 28 years; Denise Lopez-Majano, whose two young adult sons are housebound with ME, having developed the disease at ages 12 and 15; and, Jane, who is the mother of a 30-year-old daughter who was stricken with ME while in college.
“We – Jane, Bobbi and Denise, the call organizers – know firsthand how isolating and all encompassing ME caregiving can be.
We want to help change that by providing support and resources for ME caregivers and helping caregivers connect with each other and the ME community.
We look forward to talking with you soon!”
– Jane, Bobbi and Denise
Join the Facebook Group
Also, join the Facebook group for caregivers here. The Facebook Group is a space for caregivers and family members to support one another through tough times, to discuss situations and issues, to collaborate, create and (maybe) take action.
(We are respectfully limiting this group to caregivers only – we welcome patients to join our other support groups.)