#MEAction Network

Photo of Anil and his cat. A man with medium skin tone and facial hair lies in darkened room as his cat looks on. Text: "Severe ME has almost made me forget about the dancer in me." Anil van der Zee Former professional ballet dancer.

"Severe ME has almost made me forget about the dancer in me." Anil van der Zee Former professional ballet dancer.

See more stories from people with Severe Myalgic Encephalomyelitis: www.meaction.net/2019/08/08/t...

#pwME #myalgicE

Photo of Merryn Crofts- white young woman with dark hair lying in bed with an oxygen mask on. Text beside photo: "Merryn had Very Severe ME for 6 years. She was totally bedbound, tube fed intravenously (TPN) due to gastro intestinal failure, unable to bear light, noise, touch or movement She suffered with horrific pain but never lost her big beautiful smile." Under photo: Merryn Crofts died just 10 days after her 21st birthday, following an inquest her official cause of death was M.E.

Merryn had Very Severe ME for 6 years. She was totally bedbound, tube fed intravenously (TPN) due to gastro intestinal failure, unable to bear light, noise, touch or movement She suffered with horrific pain but never lost her big beautiful smile.
Merryn died just 10 days after her 21st birthday.

Photo of a tiny streak of light visible from a dark bedroom. Text: "This is how I now spend half my life, stuck in a dark bedroom. This isn’t living. This is waiting, in pain... until things get better one day. A day when there is finally proper biomedical treatment. Until then I wait." Anonymous

"This is how I now spend half my life, stuck in a dark bedroom. This isn’t living. This is waiting, in pain... until things get better one day. A day when there is finally proper biomedical treatment. Until then I wait." Anonymous

#SevereMEday #SevereME

www.meaction.net/2019/08/08/t...

I see your power, your strength, your creativity, your humanity - and I wish you did not have to be so damn strong. If I could ease something in your life, I would. But for now, I will share your stories. I hope you can be seen. And that the visibility brings CHANGE.

Before we began the Artists Project, we had other various ways to mark the day. In 2019, we focused on shining a light in those darkened rooms so the rest of the world could truly see into your lives. Sharing those again. www.meaction.net/2019/08/08/today-we-honor-and-remember-those-with-severe-m-e/

I wish I could give you the gentlest of hugs or come sit in those darkened rooms and it not hurt you. I know how hard just the energy of another human in your space can be. I truly hope the universe allows you to feel so much love coming your way.

I cannot wait to share the 5th year of our Severe ME Artists Project with you this Friday- August 8th! Yesterday, I shared some thoughts about pausing before Severe ME Day/week/month - a reminder to practice self-care and a time to send our determination and remembrance to those with Severe ME.

Text based graphic with image of a spotlight at the bottom lighting the words Severe ME. Text: #MEAction has had various ways to share the voices of those with Severe ME for Severe ME Day over the years. In 2019, we focused on shining a light in those darkened rooms so the rest of the world could truly see into your lives. Your stories deserve to be seen. We are resharing this week ahead of Severe ME Day as we wait on the release of our 5th Severe ME Artists Project!

A note from Holly - I just got a look at our 2025 Severe Artists Project and once again, you blew me away! Each year I swear I am broken and reformed by what I read and see and experience from you all. You are beautiful and vulnerable and bold. I am beyond honored to be in community with you.

As always, if you value this work, please consider donating to support us. Nonprofits AND government agencies are Going Through It for sure-- and we can do more work like this through your support.

www.meaction.net/donate

#MECFS Research Roadmap.-
The Committee recognizes the urgent need to advance research for #MECFS, especially given its overlap with #LongCOVID and relevance across multiple ICs and commends #NIH for approving the ME/CFS Research Roadmap. 🧵

Positive news!

The Senate Appropriations bill came out and utterly rejected the Trump cuts to NIH/CDC.

#MECFS funding is included in the appropriations language, in part due to @meactnet.bsky.social's battle to include it. A thread 🧵

Sending our live to you and "E"

We remember and honor those in our community with severe ME and those we have lost and we hold space for all of our experience with ME. Let’s lift one another up when able. Know that each of us has an international community where you belong and where we work together to ignite a revolution in ME care. We are stronger together.

We remember & honor those in our community with severe ME & those we have lost.

We hold space for all of our experience with ME. Let’s lift one another up when able.

Know that each of us has an international community where you belong and where we work together to ignite a revolution in ME care.

At the beginning of our time marking Severe ME Day, we want to pause to remind you to take care of yourself. The stories shared are moving and hit us deeply. Some of us grieve because we can no longer share our stories with the world through art or otherwise. Practice true self care now.

At the beginning of our time marking Severe ME Day, we want to pause to remind you to take care of yourself. The stories shared are moving and hit us deeply. Some of us grieve because we can no longer share our stories with the world through art or otherwise. Practice true self care now.

Simple sketch of 3 lit candles with text above it: "We also remember the far too many that we have lost. We grieve together. We remember together. We hold all who grieve in love. "

We also remember the far too many that we have lost. We grieve together. We remember together. We hold all who grieve in love.

You are just as much a part of our community as those more able to participate. You are valued and worthy. We are holding space for you and cannot wait for the day you can join us again. We are fighting for you to get that day.

We know the extreme isolation endured due to this illness leaves some unable to communicate. We hope that those who cannot be online or maybe only rarely can hear news from the community feel our determination and commitment to them. We see you in a way that many cannot. You are just as much a part of our community as those more able to participate. You are valued and worthy. We are holding space for you and cannot wait for the day you can join us again. We are fighting for you to get that day.

We know the extreme isolation endured due to this illness leaves some unable to communicate. We hope that those who cannot be online or maybe only rarely can hear news from the community feel our determination and commitment to them. We see you in a way that many cannot.

#MyalgicEncephalomyelitis

A pause before Severe ME Day Severe ME Day is this week. Before we begin sharing, let's take a collective moment together to send our love; our promise to remember and to keep up the fight as long as we are able to those out there with the most severe form of the disease. We hold you in our hearts and minds as we show up and build this global movement so that all people with ME will have support and access to compassionate and effective care.

Let us all to take a collective moment together to send our love and our promise to remember and to keep up the fight as long as we are able to those out there with the most severe form of the disease.

We hold you in our hearts and minds as we show up and build this global movement.

#MECFS

Over the years the community has marked this day in different ways. #MEAction has shared stories of those with Severe ME to shine a light in those darkened rooms. At community request, we have shared a virtual choir and then began the Severe ME Artists Project.

#SevereME #SevereMEday #pwME

Muted photo with two rocks with a word on them- pause and reflect. Text in top corner: "Let us pause together before Severe ME Day." #MEAction logo in bottom corner.

In August, we especially take time to honor the 25% living with the most severe form of this disease & remember those who have lost.

August 8th is the Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance, started by the 25% ME Group as a response to the death of Sophia Mirza.

Thank you so much!

I’m so grateful for @meactnet.bsky.social’s work. It’s why a portion of the proceeds of my Chronic Cards greeting card set goes to them. I’ll be adding more sets in coming shop updates. You can always donate to them directly too!

www.destinytoro.com/shop/all/chr...

Added! Thanks so much! I do not think it was an option back when we signed up for Bluesky and I had not thought to check since!

Jaime will be covering some of the papers as she reads them; keep an eye out for her threads on #MEAction’s BlueSky on Mondays. Visit: bsky.app/profile/meac...

#pwME #MyalgicE #MECFS #LongCovid

This is important because researchers not familiar with PEM may measure lab values or ask subjects to fill out questionnaires directly after a provocation-like exercise but may not be aware of the characteristic delay between a provocation and PEM symptoms, which affects results.

The PEM working group is looking at what instruments have been used to measure PEM in studies so far, recommend the best and most useful instruments, and then standardize when those instruments are used.

The PEM working group is focused on two main objectives: (1) identify standardized outcomes, both subjective (patient-reported outcomes) and objective (laboratory measures), for measuring PEM, and (2) standardize the timing for measuring PEM pre- and post-provocation.

The Common Data Elements (CDE) project was a joint effort by NIH and CDC to standardize how different symptoms and symptom-sets are measured in ME/CFS. Learn more here: www.openaccessgovernment.org/article/comm...

Our Scientific Director, Jaime Seltzer, is a member of the Post-exertional Malaise Common Data Elements Working Group - a joint project of the NIH and CDC - tasked with reviewing the literature and recommending the most effective way to measure PEM.

Square image with orange water color splashes. The image reads "#MEAction participates in the ME/CFS Core Common Date Element Project." With the #MEAction logo at the bottom. Black frame around the image.

#MEAction is helping to standardize how scientists measure post-exertional malaise (#PEM) in research. Post-exertional malaise is the defining symptom of #MECFS, and has historically been inaccurately characterized by researchers who misunderstand it.