Starting soon!

Are you frail & fabulous? Frail & fighting…formidable…funny? We want to hear what your “and” is…so tell us, what is your “f” word?

Join us this #MillionsMissing to tell the world we are #FrailAndFurious & so much more!

Fight for our healthcare
Will you join us?

Millionsmissing.org

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

Join MEAction's Shalida Dobbins and our amazing narrative working group volunteers for one of the two storytelling workshops to prepare for #MillionsMissing!

April 14 at 1 pm PT/ 4 pm ET: us06web.zoom.us/meeting/regi...

April 16th at 1 pm PT/ 4 pm ET: us06web.zoom.us/meeting/regi...

Person using a megaphone to amplify their voice, promoting storytelling for the #MillionsMissing campaign in 2026. Text: "Storytelling is a key part of #MillionsMissing this year! There are HUGE policy implications this year for telling your story. Share your story on social media and/or to our story bank. See our #MillionsMissing Take Action Toolkit for all the info." Detailed photo description: White woman with brown hair pulled back wearing sunglasses and a coat holds megaphone and is speaking into it. Above her is a sign that says "amplify your voice."

Storytelling is a key part of #MillionsMissing! Find all you need in our toolkit: https://ow.ly/IUOk50YGIh9

It’s essential that we make our policymakers understand that ME is a serious, complex disease that deserves care and support, appropriate treatments and research.

#FrailAndFurious #MECFS

Red t-shirts featuring 'Frail & Furious #MillionsMissing' on the front and '#MEAction logo on the back. Text: Tees now available! Available for immediate shipping! With or without logo on the back. Multiple colors, styles, and sizes! Order now.

#MillionsMissing 2026 #FrailAndFurious tees are now available! https://www.bonfire.com/store/meaction-1/

We have lots of styles and colors to choose from!

You can choose tees with a logo on the back on ones without.

A portion of your purchase helps support our work!

#pwME #MECFS #LongCovid

Donate to Help Marcia Deep clean her house, organized by Kolya Dazozah Hi my name is Kolya and I’m raising $500 for my friend Marcia Doherty to get her home … Kolya Dazozah needs your support for Help Marcia Deep clean her house

New #podcast episode; #Easter Musings

Recent good things I'm #grateful for but Also still present obstacles

Also housekeeping gfm friend set up to help get bad air sorted gofund.me/73aeb36e5

& News campaign docs.google.com/document/d/1...

#myalgicE #disability #spring #longcovid

New Frail and Furious logo plus the MEAction logo on red slightly swirled background. "Frail and Furious" is shown on a swath of white paint. Underneath is the text "#MillionsMissing" but the second I is the outline of a person. MEAction logo is a circle with the text #MEAction in the circle.

This #MillionsMissing, we are #FrailAndFurious!

Injustices are happening worldwide because ME is not taken with the seriousness we deserve.

Let's come together to show the world how devastating this disease is.

Join the fight: millionsmissing.org

#pwME #LongCovid #MECFS

2026 Millions Missing storytelling workshops scheduled for April 14 and 16 at 4 pm ET, with dates circled on a calendar. Text: Save the dates! 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 on April 14th and 16th at 4 pm ET. For anyone wanting some guidance and help crafting your story!

April 14 https://ow.ly/AX0650YCSEj
April 16 https://ow.ly/uy7250YCSEh

#FrailAndFurious

#MillionsMissing 2026 time! www.meaction.net/millionsmiss...

Sharing the request from @madelinenerd.bsky.social for people to email a new source to help get her story (and the story of ME) told. There is an email campaign template to use.

Attention especially to those in Canada. #pwME #MECFS #MyalgicEncephalomyelitis

Blue text on cream background with light blue grid: "ME/CFS Advocacy Week 2026 Participant Toolkit Available!" Small megaphone in one corner and text ?March 23-27" in the other. Below text is image of the toolkit which is a green background with US Capitol dome graphic above the text: "ME/CFS Advocacy Week Participant Toolkit. It's time for ME/CFS to be part of every medical provider's education. March 23-27, 2026" Solve M.E. and MEAction logos are in bottom corners.

Advocacy Week 2026 starts on Monday - March 23rd! Solve M.E. & #MEAction Network partnered to work with the systems that shape what medical providers in America learn!

Register here: https://ow.ly/OvhM50YvA5Y

Check out our NEW Participant Toolkit: https://ow.ly/9uOZ50YvA5Z

#pwME #MECFS

A single candle burns in the forefront and a multitude of blurred lights are in the background. Text: Disability Day of Mourning March 1st.

CN: violence
.
.
Today is the Disability Day of Mourning. The disability community will gather to remember disabled victims of filicide – disabled people murdered by their family members or caregivers. https://ow.ly/Y9oG50Yn6ar

#DDofM2026 Autistic Self Advocacy Network (ASAN)

Gif of a candle with a single flame on a dark background Alt: Gif of a candle with a single flame on a dark background

Thank you for taking the time to read this heartbreaking list.

Please join me in honouring their memory on this #DisabilityDayofMourning.

March 1st, 2026

I donated today.

This is a #pwME with #SevereME and other co-morbidities who had to escape their home situation.

On this #DisabilityDayOfMourning, I want to prevent any more loss. Join me. gofund.me/0b70a3928

#disability #MyalgicEncephalomyelitis

If I don't raise enough funds I'll have to get myself discharged despite needing antibiotics.
1122.89 gbp outstanding bill.

[28/02, 11:17] Nevra Liz Ahmed: After I pay this or stay more days
[28/02, 11:17] Nevra Liz Ahmed: I won't have money for rent #pwME

We were asked to share this fundraiser for a community member in need.

Nevra @nlizaki.bsky.social has severe ME and is in hospital in Pakistan. Nevra has been active in our online community for years.

Please see video and links below.

#SevereME #pwME #MyalgicEncephalomyelitis #disability

Explanation of Medicaid as a health coverage program for low-income Americans, including children, pregnant women, elderly, and disabled, funded by states and federal government. Simple graphic with cream background and black and red accents. What is Medicaid? is at the top and reply is at the bottom.

Happy Friday! What better way to spend the day than taking a moment to learn about Medicaid? Ok- it is not on my top ten list of fun Friday activities but it is so important to our community. So let’s dive in!

Let's start with the basics- What is Medicaid and how does it work?

#pwME #Medicaid

Graphic with list of 4 ways Medicaid changes affect everyone. 1. Greater cost burden on states 2. Increased strain on hospitals and providers 3 Rising health care costs for everyone 4. Workforce disruptions and new roles Black background with each point in a white box with red accents. Credit at bottom: Information from article in US News & World Report by Christine Comizio

As we continue to build-up our campaign regarding Medicaid work requirements, we will also be spending time helping us all understand Medicaid and the upcoming changes.

Today, we are focusing on how Medicaid changes affect everyone in the US.

health.usnews.com/wellness/art...

#Medicaid #PwME

State of the Union Fact Check: Nope, none so far

A doctor on a laptop screen (woman with medium skin tone and short dark hair wearing a white lab coat) while a person looks (only shown from behind- dark hair and orange top) on as if have an appointment with the medical professional. Text: Telemedicine coverage has be EXTENDED!

Telehealth flexibilities for Medicare are extended until Dec. 31, 2027. As many of you were able to express to elected officials, telemedicine is a crucial service for our community.

We will continue to advocate to make telehealth expansions PERMANENT! www.meaction.net/post/more-gr...

Liz is in a hospital via last update I read. Has medical and housing needs. Some other #pwME are helping keep her fundraising going as she is literally fighting for her life.

@nlizaki.bsky.social
bsky.app/profile/nliz...

This person is in a precarious spot - trying to get into assisted living before being kicked out of current living situation. Has fundraiser and a zon wishlist of needs. Known this person for many years.

@rarediseasepatient.bsky.social

bsky.app/profile/rare...

Cynthia is active in our online community. Has medical needs. Can donate via fundraiser. bsky.app/profile/mine...

@minetodo.bsky.social

Several ways to give. This person is disabled and homeless. They have some great art. I have bought an ornament from them before. Can also send donation.

@ethyricalartist.bsky.social

bsky.app/profile/ethy...

Red and pink sunset w bare trees

Hi all! Trying to share items for mutual aid...help for #pwME #MyalgicEncephalomyelitis #LongCovid #disability.

Some I am aware of including unhoused, possible eviction, in hospital, medical needs, etc.

Please take a look. Pick one to share.

Tonight's sunset cuz pretty.

Photo of Marisa Renee Lee at top (Black woman with curly hair with a big smile on her face wearing a black top and looking at the camera). Text underneath: Dealing with Grief and Chronic Illness: a workshop with Marisa Renee Lee. Now available from #MEAction

Grief and complex chronic illness often go hand in hand. We know we are feeling some heavy grief right now.

We have a workshop on grief with author Marisa Renee Lee available for you: youtu.be/0EbpE9Zj0V0

#pwME #pwLC #Spoonie #Grief

We still have a lot to fight for in terms of getting the funding we deserve, but we are very committed to making that happen. We deserve treatments, clinical trials, and care. THANK YOU to everyone who has taken action with us to get us one step closer to getting the roadmap funded!

A large alarm clock with a road going behind it against a cream background. Text: The Clock is Ticking. The NIH has been directed by Congress to come up with a plan to implement the ME/CFS Research Roadmap in 6 months.

The clock is ticking. The NIH now has 180 days to develop an implementation plan for the ME/CFS Research Roadmap. In 6 months, we SHOULD have a plan to implement the NIH’s roadmap for biomarkers, treatments & clinical trials.

#MEAction partnered with #NotJustFatigue to secure this support.

#NIH

A cozy spot with a blanket, mug, and open book. Text overlaid: Reminder. Join us or our Keep the Light Community event: TODAY - Sunday, February 1st at 3 pm ET

Join us today at 12 pm PT/ 2 pm CT/ 3 pm ET 8 pm GMT for our virtual Keep The Light Community Event! Come as you are and we can all be encouraged by gentle time together!

Register: www.meaction.net/event-details/keep-the-l...

#pwME #PwLC #MECFS #Spoonie