A note from Holly | #MEAction’s Social Media Coordinator:

I am so thankful that I get to witness the extraordinary compassion of this community on a daily basis. As the social media coordinator for #MEAction, I see the best, worst, and everything in between of the community. It is my job to help communicate out to the community and wider world all that is constantly happening at #MEAction, but it is just as much my job to stay in touch with the community and make sure that we are always listening, learning, adjusting, and acknowledging all that is happening in our community each day. 

I have had ME since I was 19 (diagnosed at 20) and during all my years I have never felt as included and able to participate in a nonprofit/advocacy organization as I have with #MEAction. I was one of the first to sign up to be part of #MEAction and have volunteered & participated in various ways from the beginning. The structure is geared towards empowerment. We have grown so much and that requires adjustments but still at its very core is each individual activist or small groups of local advocates coming together and being empowered to do their best work. 

I loved this community before there was an #MEAction but being part of #MEaction has certainly allowed me to participate in ways I only imagined. So I hope you  follow us on social media and help me as I work to get the word out. I love interacting with you in the comments or by messenger. I write posts/tweets with each one of you in mind as best I can. I help moderate groups as staff and as a volunteer because I love the beautiful community of support those groups provide: ones I have utilized myself and try to offer support in whenever I can. 

While all of us at #MEAction pitch in when needed, I am mainly who you will interact with on our global social media. Here is a little peek behind the curtain of your screen. I have previously shared about what I do and why so I will not cover that again but you can read it here.

It has certainly been an interesting year for us all! I am working online from my bed or my couch and occasionally my patio. Nothing new there. 🙂  I am often balancing childcare/teaching with my work now that 2020 has changed parenting up! My child might pop up to say hello or share her favorite stuffed animal in a meeting.  I might get interrupted mid-thought by my child or my brain fog so if I end a conversation abruptly it was probably not intentional. 🙂 

 While yes I do have secret hopes of hitting 20,000 on Facebook soon and am excited to see our large growth on Instagram and Twitter, those numbers only matter because of each person they represent.  I promise I always do my best and approach each interaction with the honor I feel that you place your trust in our work and are willing to share what is going on in your world with us. I truly am amazed by every beautiful thing I see in this community. 

As someone inspired by music, I have often assigned songs for our community (in my own head!) for different years or tasks. One of those is Rise Up by Andra Day. Definitely worth reading or listening to all the lyrics but some of the most poignant for our community are:

 “When the silence isn’t quiet

And it feels like it’s getting hard to breathe

And I know you feel like dying

But I promise we’ll take the world to its feet….

All we need all we need is hope

And for that we have each other”

I think about all of us with that song. We have each other to create the hope, to hold onto that hope for each other when one of us loses it, to effect change so it is not a baseless hope. We will do this together. Thank you for being my hope! 


2 thoughts on “A note from Holly | #MEAction’s Social Media Coordinator:”

  1. please tell me how i can join the MEaction community! I’ve been diagnosed with ME with little help from my doctors. I have no life and I feel very alone with this. I feel as though Im dying 5x faster than everyone else. Please help.

    1. Hi Loren. We have a few ways for you to join in. One of the best ways to start is by joining our Living with ME Facebook group and then finding your local group to join in with those in your area. All of those can be found at meaction.net/groups . You can also follow us on Facebook, Twitter, Instagram, and YouTube as well as signing up for emails at meaction.net. Please do not feel like you have to do all those things. We try to offer a variety of ways so everyone can choose what works best for them.
      Personally I would start with Living with ME group as they are so supportive and it wonderful to talk to others going through the same thing! https://www.facebook.com/groups/211058135999671/?ref=pages_profile_groups_tab&source_id=1408335399448862

      You are not alone!

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