We are now entering our 3rd #MEAction galaxy tour! This galaxy is filled with a lot of care and love. Enjoy the journey as we share what a day in the life looks like for our Community Engagement and Social Media Manager, Holly Latham!

What does a typical day look like in your role?
I am not sure there is such a thing as a typical day with this illness or community but I certainly can try. After taking those morning meds and supplements and starting the endless electrolytes, I check in across our social media to see what needs responding too. I plan out our posting schedule. I do most of the writing and design the graphics. I am working from my bed about 90% of the time.

Some days I might have a staff meeting or a newly formed social media group volunteer meeting. (Please come join us!!! I would love to have you.) I do social listening – that is just me making sure I am keeping up with what is important to our community. You drive everything we do. 

Other days I am sharing videos or creating them. Again, I work with volunteers and other staff members on these. Videos are so important to social media right now. 

I work with other staff on our communications needs as well as our overall plans of action. I can be doing anything from giving feedback on core values to writing an image accessibility policy.  I also might be loading items to our Bonfire store or speaking to a reporter. We all pitch in wherever needed. 

I assist our volunteer moderators when needed.They are amazing! Make sure you thank them for their work! And we are accepting volunteers for this as well. We offer new training and staff support. Check out our Facebook Support Groups. They are filled with amazing people! 

We do our best to use social media to educate so whether it is a past project like #FacetsOfME or a current one like #HolidayPacing, a lot of time and effort go into communicating to our community and beyond. We need to reach new people and offering genuinely helpful and accurate information is a great way to do that. 

We have active accounts on Instagram, Facebook, BlueSky, X(twitter), LinkedIn, YouTube, and TikTok. Make sure you are following us and  engage with our content when you can! I will be on the other side of the screen sending you all our best!

What is your favorite part of your job?
Interacting with our community- whether that is listening or offering an encouraging word. I love our community so much and I am so honored to get to know so many of you online – even if I only know you by your social media handle. I get concerned when a name I am used to seeing does not pop up for a while and I am so happy when I see our community engaging and sharing and doing all they can to help.

You bring me joy and break my heart – often both can happen on the same day. I have stopped whatever is going on in my day to cry for you or rejoice with you. I cannot always respond to everything but I try to respond as much as I can. Just know that what you share or send is received with love and solidarity. 

What are you looking forward to next year in your role?
I wish I had a better idea of what next year will bring! I know we are having a lot of important and hard conversations. We are making plans and we will continue showing up in whatever way the community most needs. We are truly community-driven and patient-led because we are part of the community and many of us are people with ME. However, we need your support to do that- your online interaction, your volunteer efforts, your donations…anything that you can safely give. 

What I most want is for all of those who are in those dark rooms and in pain and struggling to access nutrition and so very alone- to feel our love. We are sending it to you every day. You are in our hearts- all of the community is- but those who cannot interact with our online world or who can do so very rarely, we hold a very special place for you. We are fighting for you to be able to join us once again. 

We know that our presence, our speech, our hugs would be painful and unbearable but we are sending our love on the gentlest of comforting breezes with the lightest touch but in a way that surrounds you so fully that you know that you are wanted, needed, and loved – fully and wholly just as you are. We are not leaving you in those rooms. We are so quietly waiting right outside that door for the moment you can handle our presence again. And we are not idle while we wait. We are fighting for treatment, for support, for a cure. 

So for this very moment, that is what I want – for every single person with ME to feel that love and support and belief that they are being fought for and believed and held in love.