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Amplifying the Voices of Seniors with ME – Join the Group!

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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.

Join ME Seniors Connect

 

 

Categories: All News, Featured news

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9 comments on “Amplifying the Voices of Seniors with ME – Join the Group!
  1. Thank you Bob for the great kick off article introducing #MEAction Seniors Connect to the #MEAction network. I am proud to be a senior member of the group and have close to 50 years experience with ME. We seniors do have a voice and welcome the opportunity to be heard.

  2. E Blackadder says:

    Just heard about Seniors Connect facebook group. I developed M.E. after vaccinations then gastric flu in December 1986 when I was 38 – will be 70 this month so nearly half my life. So would likely qualify to join group. Unfortunately I am not on facebook – is there any other way of keeping in touch? Seems great idea. Feel we seniors are often forgotten, even though we may have been very involved with groups and campaigning when we were younger. Now I seem to have even less energy plus a lot of pain so increasingly difficult.

    1. Jaime S says:

      Perhaps this is an opportunity to join Facebook for the first time?

      There are those who would just rather avoid social media like Twitter and Facebook altogether, but being able to connect with others who share some of our experiences is so valuable.

      Otherwise, you might consider joining a forum like Science 4 ME. Not exactly social media, but still a social space. Feel free to email info@meaction.net if you would like a little help getting started.

  3. Nancy Wood says:

    One of the few remaining ways I can contribute to my community is by supporting and encouraging local people with ME, but this group allows us to do that on a much broader scale. We seniors are not as familiar with electronic technology as our younger friends with ME, but Bob has been teaching us how to use Facebook as a platform to combine our voices into a powerful, collective plea for progress on issues that affect seniors with ME.

  4. Maureen B says:

    Having become ill and housebound in 1991 I couldn’t access tuition in IT etc so had to try to teach myself the basics…..a combination of the brain fog and limited opportunity to make use of the then new social media ….so this is a great idea but like other seniors I am very limited in how to get the best out of the net.Thank you though for this worthy venture,and I look forward to my limited involvement and applaud other seniors more capable at spreading the word.

  5. Byron Woolcock says:

    Hopefully I may join this group? My understanding is that those with ME, or related condition, may join? I was diagnosed with MCS in 1974 and am in my eightieth year. I belong to several MCS,
    COPD and Woodsmoke sites and have found much support, information and opportunity to share my own experience .
    Thankyou for your kind consideration.

  6. I think this is a great idea. I became ill in December 1982 at the age of 32. I have been ill for 45 years. I was diagnosed at a time when it was considered a shameful disease. I was a university graduated nurse, teacher, innovator and administrator. At the time, I was studying for an MBA. I would love to join the group and share in our discussions.

  7. Mamie Holst says:

    I am having problems trying to join. When it gets to the part about the questions I push it but then it comes up that it’s not working and to try again. No luck. Thanks.

    1. Hi Mamie,
      It shows that you are now a member. Try re-starting Facebook if you still can’t get in.

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