The #MEAction Network

The #MEAction Network is an international network of patients empowering each other to fight for health equity

is an international network of patients empowering each other to fight for health equality for Myalgic Encephalomyelitis (ME) also known as chronic fatigue syndrome.

Shaina sacrificed to come and speak up at so that we can prevent others from going through her horror in losing Medica...
06/02/2026

Shaina sacrificed to come and speak up at so that we can prevent others from going through her horror in losing Medicaid.

“I'm Shaina and I am and have been many things over my life. I am an eighth generation New Orleans Creole. I'm a wife. I've been an actor. I've been a writer and a reader, cat lover, but I'm also a person with ME which colors everything.’

“One of the biggest struggles has been access and continuity of care. It's very difficult to just try to survive every day without having to think about ‘can I afford this doctor? Can I afford this specialist?’ and to burn through savings, to burn through credits, to burn through everything, trying to find answers, trying to get diagnosed, trying to get treated.”

Shaina goes on to share that in 2024 she was on Medicaid and then it was taken away. She had an acute medical crisis within two months of losing Medicaid. She was having intractable vomiting that lasted 8 months. She lost 65 pounds and was emaciated.

She shares. “Losing your access to care right before something like that is the most traumatic experience.”

She put off care and once she no longer could she was hit with large bills that she had to beg and borrow to pay. Shaina points to the millions of others in her situation. She explains we want to work and go to school but we physiologically cannot. “Our absence is our evidence because we are literally missing.”

launched our Frail And Furious campaign at the end of 2025 to start fighting for our community. We have taken multiple actions since then and are working so hard to prevent traumatic experiences like Shaina’s from happening over and over again by the thousands.

We need your support to do so! Join our fight.

05/30/2026

Orion shares their poem “Lucky” written for . Full speech available on our YT page.

Orion first had mono at 19 and slowly worsened until a crash in 2024. Orion’s wife had other illnesses and they both ended up existing in one room, “isolated from the outside world.”

Orion shares that as a q***r person of color they have often been told to “calm down” when advocating for them or their wife. They did not get the help deserved and Orion lost their wife.

This grief has taken its toll and it has Orion scared for others with ME and invisible illnesses that can be “easily pushed aside” as they have seen it can end in death.

Orion goes on to share how they are one of the “lucky” ones whose ME has improved to where they have a bit of their life back.

“I give you these words from the depths of extreme burnout because my story is what I have to give. I remember what it was like when I could barely leave my bed. When I was missing. That was a different type of limbo state. Not alive, but not dead. Now I feel so lucky to be able to go outside…”

"For the millions of people just like me who are still trapped in the depths of a disease that truly sucks the life out of you. The voices you need to be listening to are not here today. And that's precisely the point. We are all missing out on some excellent people. There is treasure trapped in these shadows...Our government has chosen to neglect us. But lucky for you, I'm loud..."

“This is why we say these millions are missing. We live in a different world with a different mindset. Our own reality warped by suffering. The type of inhuman strength that only comes from being treated inhumanely. We should be part of your world. But we aren't. And I'm not sure anyone has even noticed how many of us are gone.”

WOW! Thank you, Orion! Please also see Orion’s art show for . Can be found on that video place that starts with y.



Video Description: Person with medium dark skin tone (mixed race/person of color) with curly hair wearing a colorful top & vertical-striped pants stands in front of the HHS building speaking into a microphone.

05/29/2026

“Caregivers step into a role they didn’t plan for…now we become schedulers, advocates, cooks, cleaners, translators, detectives, and more ...while also trying to maintain the love inside of a relationship.”

David shares at 2026 about his life with his wife Shaina, a (who also shared!).

He cautions that caregiving can become about the illness and not about the person. He shares that it is important as a caregiver to be able to say, “I may not fully understand what you are experiencing but I believe you.”

Ho goes on to say “So the answer is not to tell caregivers to be stronger. The answer is not to tell sick people to push through. The answer is to build systems where people do not have to destroy themselves just to remain connected to each other. So with that idea around independence and interdependence is not a failure. It's humanity.

And so with that in mind, if we can use our voice, the skills, our platforms to help people better understand the illness close to individuals, couples, families, and communities, we have to try.Nobody should have to disappear just because they got sick. And nobody should be punished for loving someone who is.”

CUE OUR APPLAUSE!

We have supports for caregivers that includes two different support meetings a month, a support group, webinars, and more: https://www.meaction.net/caregivers

We appreciate any support you can give to help us keep fighting, building, educating, supporting, advocating, and researching!

See full speech on our page that involves you and tube. (Other social media does not like it when I use that word!)



Video description: David (a black man with glasses wearing a red MillionsMissing shirt and blue jeans) speaks into a microphone while standing. They are in front of the HHS building. Captions added.

05/29/2026

David joined us at with his wife Shaina who is a person with ME. We shared her story, too. He shares that it is a beautiful life but that it involves grief for the life they hoped for and still hope for. He shares a life full of insurance denials, energy envelopes, appointments but it is also full of beauty in their support of each other.

David also shares the issues with marriage equality not being available in the disability community. "The systems systems around disability and chronic illness are often structured in a way that makes partnership an actual financially dangerous situation where you're punished for finding that person. They tell you find your person, find your community, right? Don't go through life alone and then at the same time create policy that says, 'Oh, oh, you got married? Okay, we'll just go ahead and take a little bit of that money back, right? Give you a little bit less support.' That's absurd and cruel."

We agree it is cruel! Learn more about the fight for marriage equality in the disability community from our friends at DREDF.. They have a toolkit available!

Learn more about what MEAction is doing to help protect Medicaid through our campaign.

See David’s full video on our page that involves You and Tube. :)



Video description: David (a black man with glasses wearing a red MillionsMissing shirt and blue jeans) speaks into a microphone while standing. They are in front of the HHS building.
Captions added.

Earlier today, we shared the video of Dr. Stephanie Haridopolos, newly named Interim Surgeon General, speaking to our co...
05/28/2026

Earlier today, we shared the video of Dr. Stephanie Haridopolos, newly named Interim Surgeon General, speaking to our community at . We wanted to make sure we showed you the most important part- advocates speaking to her and her taking the time to listen.

A huge thank you to the advocates that came to help with our educational installation at HHS in DC. Thanks to each person that spoke. Thank you for sharing the stories of those unable to attend. Thank you to Dr. Haridopolis for listening and offering her allyship.

We are actively working with Dr. Haridopolos’s staff to ensure they understand our community’s needs and priorities — including our priorities to secure medical frailty exemptions under new harmful Medicaid work requirement guidelines, and fund more ME research — and we will continue to do so. We will keep you informed as we go.

As ME Awareness Month is coming to a close, we are working to get the speaker videos our for everyone. Our work continues!

05/28/2026

2026 included an in-person event at the Department of Health and Human Services in Washington D.C. on May 12th. We took this time to educate about the reality of myalgic encephalomyelitis and Long COVID.

Dr. Stephanie Haridopolis, newly named Interim Surgeon General, came to our installation and spoke with our advocates. We are thankful for her willingness to listen and interact. She also spoke in support of people with ME, Long COVID, and the chronic diseases that are too often overlooked. She acknowledged that our community needs research, care, and real support.

We are actively working with Dr. Haridopolos’s staff to ensure they understand our community’s needs and priorities — including our priorities to secure medical frailty exemptions under new harmful Medicaid work requirement guidelines, and fund more ME research — and we will continue to do so. We will keep you informed as we go.

This MillionsMissing, we pushed for change in many ways — through community action and collective creativity, and through meetings with members of Congress and leaders at HHS and NIH. As always, it isn’t over - we are continuing to work hard to make sure that our policy needs are communicated fully, and translated into action. But we also want to celebrate the successes.

A huge thank you to the advocates that came out for Millions Missing and thank you to the officials who came. Thanks especially to Dr. Haridopolis for her time and attention. Feel free to add your thanks below!

is working hard to advocate and educate around the critical issues in our community. You can support our advocacy efforts here: https://millionsmissing.funraise.org/fundraiser/advocacy



Video description: A white woman in a light yellow pantsuit stands outside the office of HHS and speaks into a microphone.

05/27/2026

Katie shares the power and beauty of our community as she shares her story with Long COVID and ME at 2026.

CONTENT NOTE: Medical euthanasia mentioned.

Katie shares that she met her new friend Danni and together they “found this network of people in MEAction that made us believe if you guys can do it and advocate and have a voice that we can do it.”

Katie goes on to share the beauty of our community that “our wins are each other's.
Your win doesn't take away from mine. It just gives me more to look forward to, more hope.”

If you are looking for community, we invite you to be part of MEAction. You can start by subscribing to emails and following us on social media (@ meactnet on most social media). Subscribe here: https://www.meaction.net/subscribe

As you get to know us we can connect you with support groups or volunteer opportunities. NO PRESSURE. Only join in however is safest for you.

We are a patient-led, disability-led grassroots community where we show up where we can as best we can and we hold space and love and fight for those unable to join us at any given time.

If able, please give to help us keep existing, fighting, educating, researching, and supporting.



Video description: Katie, (a white woman with blonde hair wearing a black tee, jean shorts, and a cap) speaks into a microphone while seated in a chair. The HHS building is in the background. Captions added.

This is Severe ME. Lena is from Sweden and has Severe ME. She has been living in her parent’s home in a dark room since...
05/26/2026

This is Severe ME. Lena is from Sweden and has Severe ME. She has been living in her parent’s home in a dark room since 2022.

This photo was taken in 2024. Now she is too ill to take photos. Lena wanted to share and be part of this campaign.

Thank you to Lena for sharing her story through photos - for bringing the focus onto Severe ME and its stark reality.

We are sometimes sent a photo or a poem from someone with Severe ME that are unable to share any other way. We do our best to honor what we know is a tremendous effort to share. We are also humbled by and thankful for the effort

Thank you also to her friend Anni who helped Lena get her share to us.

ME is myalgic encephalomyelitis - a serious, complex medical condition at all levels.

Those with severe ME are housebound and often bedbound. They need assistance with many tasks of daily living if they can even tolerate that assistance. They are living in dark rooms often with headphones to mute sounds. They might be in tremendous pain. Many can no longer feed themselves. Some are tube-fed.

It is a tremendously lonely and isolating life. It can be hard to explain that you cannot even tolerate having another human in the room with you. That a few minutes of help with toileting or basic hygiene is torture.

The most severely ill cannot communicate with us. We sometimes hear from them through their caregivers. Through the power of the internet some of the severely ill can communicate outward but there is a cost. So any effort they make should be honored.

Learn more. Share information this ME Awareness Month and all year. Donate to an org doing work. Let those who are severely ill know they are not forgotten and we are not leaving them in their rooms. We are fighting for them.

Editing to add: Lena just sent us this photo of her and her mother saying, "Dreaming of simple things. Coffee with my mom. And medical care. For some reason my heart is still beating."

Lena, we are desperately fighting for you and our whole global community to have medical care and those critically important small joys.

It is the unofficial start to summer here in the US! So it is time to help each other survive the heat headed our way. W...
05/23/2026

It is the unofficial start to summer here in the US! So it is time to help each other survive the heat headed our way. What would you add? What has become your most needed items?

And for those doing better in the heat- yay! We celebrate with you. Now pass me my fan!

Temperature dysregulation - heat and cold intolerance - is a common symptom in ME. It is surprising how difficult this symptom can be to manage until you experience it.

During one of our article we shared community members experiences. Still available to read on our site!

Jackie summarized it well: “I think people think “temperature dysregulation” is just “not liking the hot or cold” like everyone else, but it’s actually major problems cooling down in Summer and heating up in Winter. If I get too hot or cold it takes me hours to get back to a normal temperature, something healthy people can do in minutes. My functionality is extremely reduced.”

Another community member (M) shared that this was one of the worst symptoms for them. And Melissa shares, “So much thought and energy goes into managing temperature dysregulation. It is one of the most demanding, and yet least talked about symptoms of Long Covid.”



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Looking for a great FREE read for this holiday weekend during ME Awareness Month? We can help! Charley Kakel shares his ...
05/22/2026

Looking for a great FREE read for this holiday weekend during ME Awareness Month? We can help!

Charley Kakel shares his beautiful short story “PenPals” with us in honor of . Charley’s wife, Lauren, has severe myalgic encephalomyelitis (ME). Get cozy and snuggle in with the print or audio version of this story: https://www.meaction.net/penpals

As Charley and Lauren navigate severe ME together, Charley began writing letters to people in his life around the experience. The story is truly powerful and moving.

(an artist with ME) was so moved that she provided custom artwork to share with this story. No AI was used.

Steven Molony of MEAction provided an audio version so even more people can access this story.

We invite you to more about this disease, especially about the experience of the 25% of people with ME that have Severe ME - those so sick that they cannot tolerate light or sound. They might need a feeding tube and help with the most basic tasks of daily living.

This experience is explained well in one of Charley’s letters to Lauren:
“You needed to move to our finished attic to limit your exposure to noise and sound and light. The illness makes you hypersensitive to all of these things . You needed a nook in the furthest corner of the house to limit your exposure.

Just two weeks ago, you also became hypersensitive to someone sharing the same room with you. There was no energy in your body for even the most minimal of social interaction or tolerating the slightest of gestures or bodily
movements from me.”

Please check out our site to learn more & take action this May.

Please see caregiver resources on our site including monthly meetings!

Address

Princeton, NJ
08540

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm
Saturday 12pm - 4pm
Sunday 12pm - 7pm

Website

https://linktr.ee/meactnet

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