#MillionsMissing 2026 Toolkit
Governments and healthcare systems around the world fail to classify myalgic encephalomyelitis (aka #ME/CFS) as a serious, complex medical condition, leading to significant neglect in medical care and social services. Over and over again, people with ME and Long COVID
Thank you so much! Hope they keep you cozy and remind you that you have a whole community with you!
Thanks to Julia for her thoughtful piece on the end of SELF Magazine, with its longform, conversational articles about women's health. Here's why it's such a shame to see it go: 🧵
Time to get ready for #MillionsMissing which will be May 9th-16th with focus on the 12th!
We have a guide by energy level to help you safely join in!
The goal of the guide is to do the SAFEST energy level for you and all the ones under it if possible.
Toolkit: bit.ly/MM2026toolkit
That is so lovely to hear. Thank you so much for attending.
Drawn image of the U.S. Capitol dome, with the words underneath: Long COVID patients have waited too long for TESTS, TRIALS & TREATMENTS. #FundLongCOVID
📣U.S. Action Item: #pwLC #POTS #pwME #NEISVoid we need your help! Will you contact your Senators & ask them to sign on to the FY27 Senate “Dear Colleague” Letter for over $210 million to #FundLongCOVID in 2027 Appropriations using our EASY low-spoons call/email tool?🧵
A huge thank you to our community for showing up and helping us work to effect real change for our community!
Keep interacting and sharing on social media.
P.S. We also have tees and your purchase helps support our work. Check out our store: www.bonfire.com/store/meacti...
Gentle but important reminder if you are at zero- if even the lowest level is too much for you right now, just stay with us. Self-care and rest are acts of resistance. You are important. Your continued existence is critical. We hold space for you and look forward to a day you can join in again.
Social Media Tips:
Shares matter! Share & comment on our posts and on others using the hashtags below.
Please tag @meactnet and use the hashtags #MillionsMissing and #FrailAndFurious. Feel free to add additional hashtags.
Please add an image description or alt text if you can and add captions.
Level 5 actions with a level 5 battery on white background with red graphics and black text. Frail and Furious #MillionsMissing logo. Text: Show up for in-person action: There will be demonstrations globally. In the US, #MEAction is organizing a storytelling and art demonstration in Washington D.C., at HHS on May 12th from 12pm-2pm ET. If you are near DC and/or it is feasible for you to do so, join us. Learn more and register at our site.
Level 5:
Show up for in-person action.
In the US, #MEAction is organizing a storytelling and art demonstration in Washington D.C., at HHS on May 12th from 12pm-2pm ET.
Learn more and register: docs.google.com/forms/d/e/1F...
#pwME #DC
Level 4 actions with a level 4 battery on white background with red graphics and black text. Frail and Furious #MillionsMissing logo. Text: Share your story on social media as a video: Take an under 3 minute video sharing your personal story. See our storytelling prompts for this year’s messaging ideas. Use the hashtags: #FrailandFurious and #MillionsMissing, and tag @MEActnet. Create a fundraiser for #MEAction using our site, or using Facebook or Instagram's fundraising platforms.
Level 4:
- Share your story on social media as a video: Take an under 3 minute video sharing your personal story. See our storytelling prompts for this year’s messaging ideas. Tag us!
- Create a fundraiser for #MEAction using our site, or using Facebook or Instagram's fundraising platforms.
Level 3 ALTERNATIVE FOR US ONLY actions with a level 3 battery on white background with red graphics and black text. Frail and Furious #MillionsMissing logo. Text: Share your story to #MEAction’s story bank: If you don’t want to share your story publicly on social media or want to remain anonymous, share your story to our story bank. This is also a good option if you want #MEAction to share your story with decision makers. With your consent, #MEAction may use your story for its advocacy this year. Ask others to share here too!
Level 3 alternative:
Share your story to #MEAction’s story bank:
If you don’t want to share your story publicly on social media or want to remain anonymous, share to our story bank. Also a good option if you want #MEAction to share your story with decision makers. airtable.com/app4hQ0Pkj28...
Level 3 actions with a level 3 battery on white background with red graphics and black text. Frail and Furious #MillionsMissing logo. Text: Share your story on social media. Photo + your story. See our storytelling prompts for this year’s messaging ideas. Use the hashtags: #FrailandFurious and #MillionsMissing, and tag @MEActnet. Create a fundraiser for #MEAction. Start your own fundraiser using our site, or using Facebook or Instagram's fundraising platforms.
Level 3:
- Share your story!
Photo + your story. See our storytelling prompts for this year’s messaging ideas. Use the hashtags: #FrailAndFurious and #MillionsMissing, and tag @MEActnet.
- Create a fundraiser for #MEAction.
Use our site or social media. meaction.funraise.org/start-fundra...
Level 2 actions with a level 2 battery on white background with red graphics and black text. Frail and Furious #MillionsMissing logo Text: Interact on social media! Reshare/Like/Comment on posts in the community. Search hashtags including #FrailandFurious and #MillionsMissing Share our fundraiser with your network.
Level 2:
- Interact on social media! Reshare/Like/Comment on posts in the community. Search hashtags including #FrailandFurious and #MillionsMissing
- Share our fundraiser with your network. (new fundraiser coming soon but meaction.net/donate always works too!)
: Level 1 actions with a level 1 battery on white background with red graphics and black text. Frail and Furious #MillionsMissing logo. Text: Share #MEAction’s posts on May 12th and leading up to it! Like/comment/share. Search hashtags including #FrailandFurious and #MillionsMissing. U.S. Action: Sign our letter to protect Medicaid for our community.
Level 1:
- Share @meactnet.bsky.social post on May 12th and leading up to it! Like/comment/share.
- U.S. Action: Sign our letter to protect Medicaid for our community. actionnetwork.org/petitions/fr...
Time to get ready for #MillionsMissing which will be May 9th-16th with focus on the 12th!
We have a guide by energy level to help you safely join in!
The goal of the guide is to do the SAFEST energy level for you and all the ones under it if possible.
Toolkit: bit.ly/MM2026toolkit
We’ve launched Frail and Furious- a year-long campaign aimed at protecting Medicaid access for people with ME, Long COVID and other disabilities. Advocacy Manager Therese Russo shares more here: youtube.com/shorts/C-3lW...
Please join us at millionsmissing.org.
#Medicaid #pwME #MECFS #LongCovid
Liz has been a vital member of #MEAction and #MEAction Georgia for years.
We are so honored to be in this fight together with amazing advocates like Liz.
Send Liz all your best! Those sickiversaries can be tough!
Sending out love to our whole community today and always.
2026 Millions Missing storytelling workshops final session on April 16 at 4 pm ET. Graphic at the bottom with April 16th circled and April 14th with an x on top. Text based graphic with cream background and red and black accents. Text: Storytelling workshops. Final workshop is April 16 at 4 pm ET. Register now! Last chance!
Our final #MillionsMissing Storytelling workshop is tomorrow - April 16 at 4 pm ET. All are welcome!
Thank you to our narrative working group for giving their energy to help our community & thanks to our community for sharing their stories!
Register: https://ow.ly/6mXj50YCSEi
Yay! We hope it keeps being useful!
This is a photo of a person wearing a Visible pacing band on their upper arm. The photo shows the person wearing a white T-shirt with horizontal black stripes. The person is giving a thumbs up. The Visible band is a product designed to help with pacing & using energy for people with chronic illnesses like ME/CFS. The company's website is https://www.makevisible.com/.
I just wanted to say a huge thank you to @meactnet.bsky.social and Visible for the Visible band I won last month 👍 Having had ME/CFS for over 15 years I thought I knew everything about pacing but the Visible band has even taught this old dog some new tricks. Very cool 😎
#MECFS #MEAction
Contact your senators by April 15th! Info from our friends at @solveme.bsky.social below!
Building of NIH with red overlay. Text in white over the image: "#MEAction to meet with NIH Director during #MillionsMissing Week. Thank you to all who signed our letter!" #MEaction logo in top center.
We are excited to announce that #MEAction has secured a meeting with the NIH Director, Dr. Bhattacharya, on May 13th to discuss the implementation plan and funding for the NIH ME/CFS Research Roadmap.
Thank you to all who signed our letter!
https://ow.ly/7hFO50YJ0m9
#pwME #MECFS #NIH
2026 Millions Missing storytelling workshops registration open for April 14 and 16 at 4 pm ET, two sessions available. Text-based graphic with dates circled on a calendar. Text: Are you registered? Storytelling workshops April 14 and 16 at 4 pm ET. Two dates/same format. Register now!
Register now for either of our #MillionsMissing Storytelling workshops coming up THIS WEEK on April 14th and 16th at 4 pm ET. For anyone wanting some guidance and help crafting your story!
April 14 https://ow.ly/49nK50YCSEf
April 16 https://ow.ly/6mXj50YCSEi
#FrailAndFurious #pwME
Red #MEAction poster seeking board members with skills in fundraising, networking, or legal expertise, encouraging people to join the team. Detailed description: Text-based graphic with two megaphones against a red background with white and black accents. Text: #MEAction board members needed! Join our amazing team! We are especially seeking candidates who bring experience in: fundraising & networking and legal expertise. www.meaction.net Join now.
#MEAction is seeking passionate, experienced individuals to join our Board of Directors. If interested see more info & fill in form: https://ow.ly/mYia50YInfY
We are a non-profit that advocates for recognition, research, & equitable care for people with ME & Long COVID. #pwME #disability #nonprofit
Wow! That is quite a list! You are fabulous!
You also don't have to write some huge, energy draining piece to participate
If you're dealing with brain fog from ME, you could even lean into that for your writing as a stylistic choice. Short writing is ok too!
The goal is NOT for people to push themselves and crash
I'm extremely belated at boosting this but *waves hands* these workshops are happening this week
It's a creativity + advocacy workshop:
a way to creatively frame your own experiences
to help push for key systemic goals
in preparation for #MillionsMissing
Frail and...Facilitator?
Will have to work on what my personal "f" word is, but facilitator sums up being a state chapter.
#MyalgicEncephalomyelitis is severe. Its disabling. It's #medicallyfrail.
