By Moderator, Bob Gawron | Contributions by members, Linda Morganstern and Nancy K Wood
Several months ago, I approached #MEAction and Jen Brea about creating a Facebook group for Seniors. The idea was enthusiastically received and the group was created. In a very short period of time we have grown to over 520 global members. This rapid growth is a clear indication of need and the ME senior community’s willingness to participate.
After some initial conversations, it was decided that the parameters for membership would be 55 years old or older and the membership applicant must have ME. So, for the time being we are not open to caregivers of seniors with ME. Our membership reflects the typical ME male/female breakdown, meaning many more women than men. Our age range is from 55 to 79. We take special note of our 70+ year old members whom we call our “Elite Seniors.”
Over the course of the initial group building phase we framed our posts very specifically to identify our membership. These posts were titled: “Pieces of MESenior.” The prompt posts generated both a high level of engagement and a stunning candor. Subjects we have broached and will return to: Newbies, Housebound, Bedbound, Requiring Ambulatory Assistance of Some Kind, Alone with No Support, Spouses and Partners, Working Sick, Not Having Sufficient Resources, and more.
This will be an ongoing process to facilitate building our group; and to continue to identify the needs of our membership. We have also generated posts on our members’ talents, jobs and trainings during the course of their lives. Not surprisingly our senior members are a diverse, mature, intelligent and talented group with a vast array of life and illness experiences.
Through these and other membership and moderator posts we are developing the fellowship, sharing and support necessary for this group to thrive and move forward together toward a larger and common purpose.
What is that larger purpose?
Members in this group, many of whom have lived with ME for decades, have unique insight into this illness and understand the impact of aging with it. We have much to offer; the problem for seniors is that no one is asking. “Our Voice Matters” is a reflection of our frustration and a statement of what we hope for going forward.
What we have to offer is only part of the purpose equation. We also have a unique set of issues and needs that warrant acknowledgement and to be addressed. To put it bluntly and succinctly, many of our members need help. We want our needs listened to and we deserve input leading to concrete action.
This article is our first step in having our voices heard on a variety of senior topics. We welcome the opportunity to work with MEAction, and the broader ME community, as well as the medical community and researchers. on senior issues.
We wish to become a force in the ME movement and as such be included in all important ME issues. The result of our inclusion and participation will benefit both the ME community and seniors in the community.
This really begins with how we are perceived. We are seniors with ME. We have a lifetime of managing this disease while at the same time navigating all the usual life experiences. Some of us were early advocates. We have paid our way by our countless hours of suffering. We have paved the way for others to move forward. Now in our senior years we cannot afford to be left behind, nor should we be forgotten.
We look forward, with our hard-earned determination, to becoming an integral part of the larger MEAction Community.
To quote the famous last line from a classic old movie, Casablanca. “I think this is the beginning of a beautiful friendship.”
We encourage all seniors to join MESeniors Connect. Your participation is critical to creating a Senior Voice that can create change for seniors with ME.
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The NIH ME/CFS Research Roadmap public comment period is open now with a deadline of March 8th. #MEAction is a member of the ME/CFS Research Roadmap Working Group and for the past several months we have been advocating on behalf of this community within this group. Our Executive Director, Laurie Jones, served on the nervous