#MEAction Network

Join our Pace to the Capitol! We can’t Race, but we can Pace. Register today to help change policy, culture and research funding for ME and Long COVID. www.meaction.net/pace-to-the-... Our most ambitious #MIllionsMissing yet! #pwME #PaceToTheCapitol #pwLC

Applications for the NextGen IACC Scholars Program (a funded research training and mentorship opportunity for graduate students at Canadian universities) are due by November 16, 2026, at 11:59 p.m. ET. Learn more: https://ow.ly/zNUo510193E We have an amazing set of mentors at the ready!

21h

It's #MedicaidMonday! Today, we are sharing our policy platform. We did our best to keep it simple (as simple as we can make something that was created to be intentionally complicated!). Check out our policy recommendations for states: https://ow.ly/TAot51017ZV #Medicaid #pwME #pwLC

Happy Halloween! Are you into the spooky season? We know it can be hard to join in when living with ME or when a lot of your time is spent as a caregiver, but we have some good options for you. Thanks to Orion, CoRy Wysz 💤 and Steven! https://ow.ly/IaA25100OB4 #Halloween #Spoonie

Let's head into this fall weekend together with a reading of "Drift" by Jennifer K. from "Near-Life Experiences: The Pillow Writers Anthology, Issue 2." More info: www.meaction.net/post/now-ava... US: www.amazon.com/dp/B0FRZLMBV... Thank you Jennifer K and @pillowwriters.bsky.social! #pwME

docs.google.comDisability Voting Rights Week 20206Disability Voting Rights Week 2026 Voter Resources We have compiled a list of voting resources to support our community’s access to vote. Plain language guide: https://autisticadvocacy.org/policy/t...

Join us for a roundtable of caregivers discussion facilitated by Denise Lopez- Majano in honor of National Family Caregiver Month that will be held on Nov. 1 at 3 pm ET: “Things We Caregivers Wish We Had Known.” https://ow.ly/v4x45100cI6 #Caregiver #FamilyCaregiver #pwME #carer #MECFS

#MEAction Network reposted

ME/CFS San Diego

@mecfssd.bsky.social

Disability Voting Rights Week Resources: Two weeks until Election Day! @meactnet.bsky.social shares nonpartisan resources to help people with ME/CFS prepare to vote, understand their rights and navigate voting access. docs.google.com/document/d/1...

Washington DC: Join us for our culminating event in front of the U.S. Capitol, where we will display 200 beds to make the suffering of ME & Long COVID visible. In Your Community: Join the movement to place mini beds in public places & large beds in front of capitols in your state. Guide coming!

From your bed: Using mini beds and creative storytelling, our community at home will speak about their own experiences living with the disease. Get your pace pack: Everyone who raises $150 or more will receive a pacing pack! Scholarships will be coming. How are you joining in? #MECFS

meaction.net#MEAction North Carolina Support Call | #MEActionPlease join us for our monthly #MEAction NC support call, every 3rd Wednesday of the month at 12:30 PM Eastern. All people with ME/CFS or Long Covid and their caregivers or family are welcome! Click...

We are working on a number of unprecedented opportunities this year that we have never had at once, and we need to keep ME in the spotlight. We have lots more info coming but here is how you can join in- pick one or more! ⬇️

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#MEAction NC

@meactionnc.bsky.social

🍁 Happy Fall & Halloween 🎃 Y’all! @meactnet.bsky.social NC State Chapter Support Group is today, Wed, 10/21, 12:30 pm ET US. Open, paced convo on highs & lows of living with or with someone with ME/CFS or Long Covid. Details/Join info: www.meaction.net/event-detail... 🫂 Come 4 cyber hugs.

Two weeks until election day! Have you voted or made your plan to vote? In September, MEAction participated in the non-partisan Disability Voting Rights Week to help our community be prepared to vote. Check out these resources: https://ow.ly/j3lB50ZZte3 #pwME #Vote #CripTheVote #disability

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Wilhelmina Jenkins

@wilhelminaj.bsky.social

@meactnet.bsky.social is launching an exciting campaign that will run for 7 months called “Pace to the Capitol”. There will be ways for everyone to participate, regardless of their level of severity. I am excited by the thought of this grassroots effort reaching across the country. Join in!

#MEAction Network@meactnet.bsky.social

MEAction is launching its largest #MillionsMissing campaign yet – “Pace to the Capitol!” For the next 7 months, MEAction is bringing ME out of the shadows and into public places across America as we pace to the U.S. Capitol! LEARN MORE: www.meaction.net/pace-to-the-... #PaceToTheCapitol

JOIN THE CAMPAIGN: - Washington, DC: Join us for our culminating event in front of the U.S. Capitol, where we will display 200 beds. - In Your Community: Join the movement to place mini beds in public places and large beds in front of your state Capitol.

- From your bed: Using mini beds and creative storytelling, our community at home will speak about their own experiences. - Get Your Pace Pack: Everyone who raises $150 or more will receive a pacing pack! (Don’t worry, we will also have scholarships!) #MyalgicEncephalomyelitis #MECFS #LongCovid

Our campaign will culminate with a powerful display of 200 beds at the U.S. Capitol on May 12. This campaign is about so much more than just beds. MEAction is working on a number of UNPRECEDENTED opportunities this year –- and we are using our Pace to the Capitol campaign to make ME VERY VISIBLE.

meaction.netPACE TO THE CAPITOL | #MEActionThis campaign will bring ME/CFS to lawmakers in all 50 states – and to Congress!

And, we need YOU – our community and allies – to show up from your beds, in your communities and in D.C. to make our months-long campaign a success! Register now: www.meaction.net/pace-to-the-...

Our “Pace to the Capitol” campaign runs from October through May. Advocates across America will strategically place mini beds & big beds in public places in their local communities, including in front of state capitols, sparking conversation about the severity and needs of ME and Long COVID.

You are invited to the MEAction Artist Salon on Nov. 22nd at 3 pm ET. https://ow.ly/HVzo50ZG6Ga The salon is a creative, virtual gathering where everyone in our community is invited to attend live and share their art with the wider community. All types of artwork are welcome! #pwME

Open Medicine Foundation (OMF)

Join #MEAction for a free EXTREMELY modified movement class Friday, Nov. 6 at 2 PM EST. https://ow.ly/UFrT50ZYxk6 This 30 minute class is designed specifically for #pwME & can be done from bed. We are thrilled to partner with Shannon Williams-Bramburger of Nourish Therapeutic Yoga again.

#MEAction Network reposted

@openmedf.bsky.social

A treatment's mechanism of action is the specific biological process by which it produces its effect in the body. Understanding mechanism of action helps clinicians make smarter, more personalized treatment choices for people living with ME/CFS & Long COVID.

#MEAction Network reposted

Solve M.E.

@solveme.bsky.social

The CDC's proposed 2028 survey could leave millions of people with ME/CFS and Long Covid uncounted. Solve is speaking up. You can, too. Submit your comments by October 19! Check out the link below for details: https://solvecfs.org/cdc-me-cfs-long-covid-survey/ #MECFS #CDC #HealthAdvocacy

@exceedhergrasp1.bsky.social

RECOVER-TLC’s 3rd annual workshop is coming up this November 4-5, 2026. Registration is open. A draft agenda has just been shared. In-person and online attendance options. All the info you need can be found here: https://ow.ly/aQws50ZYwja #pwME #LongCovid #NIH

#MEAction Network reposted

It's ME(Jaime)

This is the disease for which I research and advocate: #MECFS. Even mild presentation is life-changing, and this is what severe looks like. People are surprised so many of us were athletes. They want to believe this can only happen to people who were already unwell. www.bbc.com/sport/athlet...

bbc.comBeth Dobbin: British Olympic sprinter in bed for 22 hours a day after ME diagnosisBeth Dobbin ran for Great Britain at the Tokyo Olympics in 2021. Five years on, she is largely bedbound after being diagnosed with ME, a devastating illness for which there is no cure.

#MEAction Network reposted

It's ME(Jaime)

@exceedhergrasp1.bsky.social

Replying to @exceedhergrasp1.bsky.social

Very severe ME may involve loss of ability to communicate, to leave bed, and the ability to digest properly. If you're a medical provider or researcher who thought #MECFS was fatigue, take a look at this article and share it with your colleagues. www.mayoclinicproceedings.org/article/s002...

mayoclinicproceedings.orgDiagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue SyndromeMyalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection. There has been increased interest in ME/CFS recently because of its significant...

#MEAction Network reposted

ME/CFS San Diego

@mecfssd.bsky.social

@meactnet.bsky.social Halloween Art Workshop: Build figure-drawing skills with artist and ME/CFS advocate Orion Romero in this free online workshop on October 29 at noon ET. Just bring pencil and paper! meaction.net/event-detail...

meaction.netOrion's Halloween Art Workshop | #MEActionWe're excited to bring you another art workshop on October 29th, 2026, at 12 PM EST! This time, one of our most active volunteers, Orion Romero, will host.

Caregiver volunteer Denise Lopez-Majano wants to help spread kindness - 70 acts of kindness by her 70th bday on Dec. 7! The 1st act she suggests is to be kind to yourself! Please share if you committed an act of kindness in comments beneath article! https://ow.ly/9WaG50ZYb6A

meaction.netBeing on the Same Team: Strengthening Relationships Through Chronic Illness | #MEActionJoin #MEAction for our Caregiver Appreciation Month webinar on November 15th. 1-2pm PT | 4-5pm ET

Please join us on November 15th at 4 pm ET for a special talk with Kim Moy of Caregiver Wisdom - "Being on the Same Team: Strengthening Relationships Through Chronic Illness." It is for BOTH the #caregiver & the #pwME/ #pwLC/ etc. www.meaction.net/event-detail... #FamilyCaregiver

Have you signed up for our Halloween art workshop yet? It will be October 29th at noon ET- all online & free to join! https://ow.ly/yJBN50ZXIpn Orion Romero, a #pwME, educator, artist, & MEAction volunteer, will be hosting! Thank you, Orion! Join in & have fun! Register now!

MEAction's next #caregiver support call is this Saturday - Oct. 17 at 1:30 pm ET. We welcome caregivers of people w/ chronic diseases such as #MyalgicEncephalomyelitis (ME), #LongCOVID, #MCAS, etc! To join the calls, please email caregiver@meaction.net at we will get you set up!

The 1st webinar in the ME/CFS Exchange Webinar Series is Thursday, Oct. 8 at 1 pm ET. It will focus on post-acute infection symptoms. Registration required: https://ow.ly/2ABp50ZOPKP Hosted by NIH NINDS in partnership with MECFSnet. #NIH #PwME #MECFS

@exceedhergrasp1.bsky.social

We are thrilled to bring you 2 new webinars from Denise Lopez- Majano & Kim Moy. "Things We Caregivers Wish We Had Known" w/ Denise on Nov. 1 at 3pm ET. “Being on the Same Team: Strengthening Relationships Through Chronic Illness” w/ Kim on Nov. 15 at 3 pm ET. Registration coming soon!

#MEAction Network reposted

It's ME(Jaime)

Our paper about the challenges and opportunities in decentralized clinical trials for #LongCOVID is out! We discuss the regulatory, clinical, & disease-specific challenges we faced in building a clinical trial network for Long COVID. Please read and share with your networks! 🧪

frontiersin.orgFrontiers | Facilitators and barriers to decentralized Long COVID platform clinical trials using repurposed drugsLong COVID is an emerging chronic condition that results in substantial impairments in quality of life, physical function, and ability to maintain gainful em...

Please note the title of webinar and date are switched in the graphic. The dates and title are correct IN THE POST. (Doing too many things at one time- sorry!)

We are delighted to bring you this new campaign at the request of our amazing caregiver volunteer Denise Lopez-Majano. Denise is turning 70 and wants to help spread kindness throughout our community - 70 acts of kindness by December 7th! DETAILS: https://ow.ly/1IPH50ZTE55 #pwMe #Caregiver

We're excited to bring you a new art workshop on Oct. 29 at 12 PM EST. We have a Halloween theme to celebrate spooky season! One of our wonderful volunteers & #pwME, Orion Romero, will host. https://ow.ly/2zFU50ZTl4T All you need is pencil, paper & way to join online! #art #spoonie #MECFS

MEAction’s Partner #Caregiver Support Call led by Kim Moy of Caregiver Wisdom is coming up Oct 4th at 12 pm PDT /8 pm BST. All caregivers welcome. To join, email kim@caregiverwisdom.net. Longtime community member & caregiver Charley Kakel will lead our conversation focusing on Micro-Acts of Joy.

Dealing with Uncertainty and Chronic Illness -A Workshop with Marisa Renee Lee is now available to watch! https://youtu.be/gopHHk_4R4c We had a meaningful time coming together as a community. Huge thanks to Lee (author of Grief is Love and Waiting for Dawn) for leading this workshop. #pwME #pwLC

@amberunmasked.bsky.social

MEpedia is going strong-- we just received notice that MEpedia reached 20,000 clicks from Google search in the past 28 days alone! Your support helps important knowledge get in the right hands. Check us out at www.me-pedia.org! #pwME #MEpedia #MECFS

#MEAction Network reposted

Amber Love (she/her)

@mikiesherrill.bsky.social NJ needs to get on this. Since receiving mail that under the new "work rules" I would lose my coverage, I've been dreading being uninsured again. MC has been the only reason I have seen doctors, the dentist, and had tests illuminating an incurable disease not listed here.

#MEAction Network@meactnet.bsky.social

Medicaid leaders in Pennsylvania & North Carolina have confirmed that ME/CFS, Long COVID, MCAS, POTS, & hEDS are on their lists of conditions that may qualify for the medical frailty exemption—PA has included ME/CFS as a Tier 1 condition, meaning an ME/CFS diagnosis alone can establish eligibility.

It is #MedicaidMonday and we are back with #FrailAndFurious campaign* updates. We have been busy and we want to make sure we share the wins along the way! Full details: www.meaction.net/post/making-... In the past weeks, MEAction advocates have been making real progress across the country.

Advocates have participated in stakeholder meetings & webinars in 6 states, bringing the voices & needs of people with ME/CFS & Long COVID into the rooms where these decisions are being made. Our advocacy has opened new doors to advance recognition of ME/CFS + w/ state public health leadership.

meaction.netMaking Progress for ME/CFS and Long COVIDState Medicaid leaders are listening. Here’s what we’ve won so far, and what comes next.

Find ways to get involved at www.meaction.net/post/making-... * New to this campaign? MEAction is leading the #FrailAndFurious campaign to protect Medicaid access for people with ME/CFS, Long COVID, and other infection-associated chronic conditions (IACCs).

We’ve also connected with state health officials in California, Wisconsin, and Colorado, while pursuing connections in Alaska and Nevada. Four advocates have shared their lived experiences directly with Medicaid leaders. Thank you, advocates! #PwME #medicaid #pwLC