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.

MEAction Scientific Director, Jaime Seltzer is participating in the NIH ME/CFS conference today. Presenters are from th...
03/30/2026

MEAction Scientific Director, Jaime Seltzer is participating in the NIH ME/CFS conference today. Presenters are from those involved in the NIH ME/CFS Collaborative Research Centers - Cornell, Columbia, ICanCME (Canadian network), RTI, and NIH staff.

Seltzer said it was encouraging to see all these researchers (especially post-docs and PhD candidates) presenting, producing posters, and doing excellent work.

We appreciate how Jaime shows up for our community. We are incredibly grateful to have her expertise.



*It involves unpublished data so is a closed meeting.

Thank you to all who participated in ME/CFS Advocacy Week 2026. Please rest up and take care! You helped make sure our c...
03/27/2026

Thank you to all who participated in ME/CFS Advocacy Week 2026. Please rest up and take care!

You helped make sure our community is heard at both the state and federal level this year. That matters — more than we can say.

And if you were unable to join in but feel up to joining in sometime soon- you can still sign on to the letters for State Medical Boards and share that ask! https://docs.google.com/forms/d/e/1FAIpQLSdXIoHN1Ej7qadY4fhGF7BZB8dtX7zWul0jugb4sh75Ybl2RA/viewform

This work continues. Stay connected with Solve M.E. and for what comes next.

Again, thank you!!!

REMINDER! We have a Protest Guide for those with ME or other energy-limiting chronic disease who are wanting to join in ...
03/27/2026

REMINDER! We have a Protest Guide for those with ME or other energy-limiting chronic disease who are wanting to join in demonstrations or protests.https://www.meaction.net/_files/ugd/b5886a_fe193621603141e69f99eb59011e39e2.pdf

The first half focuses on creating a more accessible protest and the second half focuses on attending an in-person protest safely.

This post focuses on attending in person but first and foremost- please remember -however you can participate matters! And if right now your way to join in is by your survival - that is enough!

There are many ways to take action from home. MEAction is often sharing options.

For in-person protests, ’s guide focuses on before the protest, day of protest, and afterwards. As we understand as people living with the ME, preparation is key but still no guarantee. Plan, ask questions, rest, organize what you need. Pack your must haves. Go through our list in the guide.

For the day of the protest, set your boundaries and maintain them. Make sure you have a protest buddy or more. Pace/ rest/ use your mobility aids. Afterwards, have planned recovery time. Aggressive resting is your life goal.

Please see the guide for a lot of great advice! We also link out to other handy tools and info. What have you found most helpful?

Everyone, please take care!



Alt text embedded.
ID: Several blocks take you through advice for before, during, and after protest for people with ME and other energy-limiting chronic disease.

ME/CFS is not consistently recognized, diagnosed, or safely managed across healthcare settings. People receive contraind...
03/26/2026

ME/CFS is not consistently recognized, diagnosed, or safely managed across healthcare settings. People receive contraindicated recommendations. Diagnoses are delayed by years. That is a patient safety concern, and it happens because ME/CFS is not part of standard medical training.

We're asking State Medical Boards to meet with our community and recommend ME/CFS questions for national licensing exams, so that ME/CFS competency becomes expected knowledge for every clinician.

Will you add your name? It takes 2 minutes:
👉 tinyurl.com/StateMedicalBoardForm

And if you can share this post, that helps too. Thank you.

Today is one of the most important days of ME/CFS Advocacy Week 2026.We're delivering sign-on letters to State Medical B...
03/26/2026

Today is one of the most important days of ME/CFS Advocacy Week 2026.

We're delivering sign-on letters to State Medical Boards and Chief Medical Officers across the country — making the case that ME/CFS must become a standardized part of medical education.

The more signatures we have, the stronger our case. Here's how to add your name:

Community sign-on letter to State Medical Boards: tinyurl.com/StateMedicalBoardForm

Clinician letter to Chief Medical Officers (providers only): tinyurl.com/ClinicianSignOnForm

Help amplify by sharing our posts: tinyurl.com/MECFSThursdaySocials

We also have an optional Zoom call at 3 pm ET today.
Register to receive today's Zoom link: tinyurl.com/SolveMEAdvo2026

Solve MECFS Initiative

Today is Federal Social Media Day — no Zoom, just two actions you can take right now. This is the most time sensitive ac...
03/25/2026

Today is Federal Social Media Day — no Zoom, just two actions you can take right now. This is the most time sensitive action of the week!

1. Contact your Senators and Representatives and ask them to support ME/CFS research funding: solvecfs.quorum.us/campaign/157943

2. Share our posts to help grow the number of voices Congress hears: tinyurl.com/MECFSFederalAdvocacyDay

Solve MECFS Initiative

Day 2 of ME/CFS Advocacy Week! Today's action: write to your state's Patient Safety Agency.We have an options Zoom call ...
03/24/2026

Day 2 of ME/CFS Advocacy Week!

Today's action: write to your state's Patient Safety Agency.

We have an options Zoom call at 3 pm ET if you want to hear more about this action and work to write your email in community.

We've made it as easy as possible — there's a pre-written template ready for you, and it only takes about 20 minutes. Every letter, email, or online form submission helps build the case to make ME/CFS part of standardized medical education.

1. Access your state-specific instructions and point of contact.
2. Download your letter template, personalize with your experience, and send to your state agency.
3. Log your submission into our advocacy tracker.

All links can be found in the quick start guide: https://ow.ly/ftiB50YybUt

Solve MECFS Initiative and The Network are partnering together for ME/CFS Advocacy Week 2026. We are focusing on medical education. It's time for infection-associated chronic conditions (IACCs) like ME/CFS and Long COVID to be part of every medical provider's education.

ME/CFS Advocacy Week 2026 starts today and it's not too late to join!Solve MECFS Initiative and The Network are buildi...
03/23/2026

ME/CFS Advocacy Week 2026 starts today and it's not too late to join!

Solve MECFS Initiative and The Network are building the case to make ME/CFS part of standardized medical education. Register now and we'll provide everything you need. Register here: https://tinyurl.com/MEActionAdvo2026

We have a virtual kickoff call today at 12 pm PT/ 3 pm ET. You are welcome to join and if you cannot make it, there will be a recording.

Consider today our training day. If you cannot manage video, please take a look at the participant toolkit. Once you register, you will be emailed all you need.

Remember to take care of you! Rest up. Deep breaths. We are in this together.

Are you experiencing post-exertional malaise (PEM)? Please check out these pacing guides. https://www.meaction.net/pacin...
03/19/2026

Are you experiencing post-exertional malaise (PEM)? Please check out these pacing guides. https://www.meaction.net/pacing-and-management-guides

PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting 24 hours after the triggering event. Physical activity, cognitive overexertion and sensory overload can all trigger PEM. Post-exertional malaise is a unique symptom, incongruent with experiences of fatigue after overexertion in healthy individuals. It is NOT the same as being more tired than normal after activity.

Our original Pacing and Management Guide was released in 2020 along with our campaign as we knew the tidal wave of new people experiencing infection-associated chronic conditions was about to begin - including but not limited to myalgic encephalomyelitis (AKA ME/CFS).

We then created a Pediatric Guide along with Long Covid Families and then a guide for clinicians with Patient-Led Research Collaborative. These guides can help you get started and learn how to stop, rest, and pace.

Our pacing guides are just a few of the many resources on a list we compiled with Open Medicine Foundation, Bateman Horne Center, and Solve MECFS Initiative. It includes a variety of research, support, education, and more. Link in comments!

We have been sharing stories from other Long COVID organizations as well as individuals all month. We know the cost of this effort so please take care and if you are able, feel free to check out our reposts/stories/etc!

Advocacy Week 2026 starts on Monday - March 23rd! This year, Solve MECFS Initiative and The Network are partnering o...
03/18/2026

Advocacy Week 2026 starts on Monday - March 23rd! This year, Solve MECFS Initiative and The Network are partnering on a medical education initiative. We're working with the systems that shape what medical providers in America learn!

Register here: https://ow.ly/miky50YvzGf

Check out our NEW Participant Toolkit: https://ow.ly/XYsh50YvzGm

We’ll be engaging with patient safety agencies, State Medical Boards, and Chief Medical Officers and asking them to use their institutional authority to champion ME/CFS.

Our ultimate goal is to ensure ME/CFS appears on national medical licensing exams, but this Advocacy week we are focusing on building the relationships that will get us there.

The week is built around writing letters, collecting signatures for community sign-on letters, and personal storytelling - things you can do at your own pace, from home, with templates provided and ready to go.

Your participation makes all the difference! Thank you!

We must protect voting rights for people with disabilities and all citizens! The Senate begins consideration of SAVE Ame...
03/17/2026

We must protect voting rights for people with disabilities and all citizens! The Senate begins consideration of SAVE America Act today.

The president has said he will not sign other legislation until this passes putting more pressure on the senate.

Sample script and email to contact your senator are provided here by The Autistic Self Advocacy Network (ASAN): https://autisticadvocacy.org/2026/02/save-act/

There is also a simple email linked here: https://ncavote.org/resource/nosaveact/

We have previously shared about the SAVE Act and the SAVE America Act and the concerns that it will limit registration and voting for disabled folks and other citizens. Time is critical now.

As shared by the National Coalition on Accessible Voting:
“If passed, these bills would:
• Limit vote-by-mail
• Limit who can give help to voters with disabilities
• Require hard-to-get documents, such as passports or birth certificates, to register to vote.

Millions of voters will face new barriers when trying to vote, including:
• Disabled people
• Older adults
• People with limited transportation
• People with limited access to documents

There is NO EVIDENCE that election fraud by noncitizens is a widespread problem.

However, there is clear evidence that these policies would block people (who ARE legally eligible) from voting. These policies would conflict with protections under the Americans with Disabilities Act and the Voting Rights Act that have been around for many years.”

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Princeton, NJ
08540

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

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https://linktr.ee/meactnet

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