This community is at the heart of everything we do. With this being a centering foundation for the work that we do, it is no coincidence that we have all experienced moments that shine a light on how beautiful and heartwarming this community and our work can be!

This Valentine’s Day we asked our staff to share moments that have warmed their hearts:

the name Laurie written in white inside a red heart

A moment that warmed my heart was witnessing the community coming together at the September 2022 #MillionsMissing Protest. People with ME and Long COVID, putting their bodies on the line, in front of the White House demanding more and supporting each other represents everything I love about this movement.

the name Steven written in white inside a red heart

Mine is really a Frankenstein of moments. My heart is warmed each time I get to connect with the community, whether by witnessing the power of the activists at a #MillionsMissing protest, seeing works of art at writers and artists salons, or responding to the listeners of our Chronically Complex podcast, I am always moved by our community’s strength, talent, and grace.

the name Ben written in white inside a red heart

I love when I’m doing a Zoom call with another chronically ill person for the first time, who wants to get involved with #MEAction, and without me saying anything they already get that despite everything they’ve gone through they’re not just living alone with some medical mystery. They see themselves as part of a larger movement for the millions missing just like them. That’s when I’m most reminded that we’re making a difference and building a force that can’t be stopped.

the name Holly written in white inside a red heart

I am lucky in that I get to see so many heartwarming moments every day on social media. The amount of kindness I see in our community is astounding. The most recent event that touched me was the Writers’ Salon. I loved hearing from the talented authors but even more I loved seeing the supportive community they have built for one another.

After a talk I gave, a few disability studies students with Long COVID thanked us for the Pacing Guide and the #StopRestPace campaign. Everyone in their lives told them to ‘push through’; but it was only after using the Guide that they reached a solid baseline and found their feet. Hearing from someone personally that our work had a direct, positive impact on them and that they don’t know where they would be without it… that was something else.

the name Adriane written in white inside a red heart

I’m feeling A TON of LOVE for the journalists we’ve worked closely with over the past several years who have become allies for the ME/CFS community. They took the time to listen deeply to our story, and are running with the ball. Most recently, a journalist led the charge to respond publicly to a deeply egregious article repeating fallacies about our community.

A moment that warmed my heart was creating and hosting the first Artist Salon in May 2021. I was nervous to see how many people would show up and how the Salon would be received. All my worries were washed away as the Salon turned out to be oh, so lovely and the community was very supportive of all presenters. A moment that stuck with me was a woman who never attend a #MEAction event before and never wrote poetry before, decided to share her very first ever poem. This illustrated to me the importance of creating new ways for us to connect–ways that can welcome in new people–and how powerful the #MEAction community is in providing a found family for all.

These are our moments, what are yours? Do you have a moment that brought a smile to your face or joy to your heart since becoming part of this community? If so, let’s spread that love today! We know many of our days are hard. That we shouldn’t have to fight. That we shouldn’t have to be here. But there are so many lovely moments and lovely people to celebrate and that is our aim today Post on social media or email us back your moment that warmed your heart! We can’t wait to read them!

From our hearts to yours, 
All of us at #MEAction


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A laptop sitting on a desk. In the background, you can see a cup and saucer, some post-it notes and a folder. On the screen is the Scottish Government's website, with a large title that says 'Scottish Good Practice Statement on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS).' A red banner is at the bottom of the photo with white writing which says, '#MEAction Scotland responds to the updated Scottish Good Practice Statement on ME.’ The ME Action Scotland logo is in the top left corner.

#MEAction Scotland responds to the updated Scottish Good Practice Statement

The Scottish Government published the updated Scottish Good Practice Statement (SGPS) on ME-CFS on 28th February 2023.  The decision to update the Scottish Good Practice Statement, originally published in 2010, was a result of the Scottish stakeholder review of the 2021 NICE guideline on ME/CFS, and its recommendations for implementing the guideline in Scotland. The

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