The #MEAction Network

10/28/2025

We just signed off the amazing virtual workshop with Marisa Renee Lee focusing on grief and chronic illness. WOW! At least 7 countries were represented and we had an amazing time together. What a powerful act of true self care.

We touched on the importance of finding joy and taking care of ourselves in the workshop so I thought I would add this reminder to our wider community so we can all pick a way we will practice true self care.

The traditional methods or fluffy ideas we see in a magazine for self care are sometimes not accessible to those with ME or other complex chronic illnesses. What are ways that you have found to practice self-care?

A list of suggestions to help get you started:
* Snuggle up with a good book- Maybe a fun romance or a book of poems. We have two anthologies available created by the Pillow Writers. Link in bio.

*Journal- this can be short- text into your phone or bring out your favorite notebook

*Say no without guilt- This is tough. But we must set boundaries.

*Remember you are worthy just as you are. - Speak this truth. Remind yourself every day.

* Meditate - we have some free options on our YouTube from Nourish Therapeutic Yoga. There are some good phone apps too.

*Create art - it does not have to be perfect. It can be coloring or sketching or writing a haiku.

*Listen to something you enjoy - maybe a podcast or audiobook. Maybe your favorite music. Maybe you can only manage some ocean sounds. Whatever works with any sound sensitivity.

*Take 3 deep breaths - some days this may be all we can manage but it really can help.

*Visit an art gallery from your bed - we have all 5 years of our Severe ME Artists Projects available on our site. Check one out!

*Wear your comfiest clothes - changing into them can be tough but hey if you are stuck in them for days at least they are comfy. Pick your favorite color or something with an important reminder. And hey- we can help you find some more! Link in our bio. Grab that new low power/spoons/rest is best/ taking naps top or pants.

What else would you add? What can you do to take care?

10/28/2025

We have been asked by Karen's family to share this update.

They conclude that, 'We all continue to be worried and stressed about ESHT’s threats to take Karen to Court and to try to evict her from hospital without the TPN she needs to survive. The admin caused by ESHT and St Marks is continuing to be stressful and is also exhausting for Karen. The admin work includes thinking, talking, Karen having things read to her and composing emails. It uses a lot of time and energy and causes Karen overexertion and worsening of the ME symptoms. There is a lot of pressure to get things done.

Thank you so much to everyone who has signed and shared the petition. Also, thank you very much to everyone who has chipped in to promote the petition. It is very generous of you and it makes a big difference. Thank you for your supportive comments. It is all much appreciated by us.'

https://bit.ly/47uXx8E

Photo: August 2025 - Karen with her new PICC line 4 days after it had been put in. Hello Everyone Karen has now been in Conquest hospital for 1 year and 9 months. Karen is continuing to have TPN (IV feeding) and IV fluid in hospital. Karen had been started on IV antibiotics for a PEG-J site infectio...

10/27/2025

Join us tomorrow- Oct. 28th at 3 pm ET for a virtual workshop! Get your ticket today. https://www.meaction.net/event-details/dealing-with-grief-and-chronic-illness-a-workshop-with-marisa-renee-lee

Grief and complex chronic illness go hand in hand. It could be the loss of the life you thought you would live, loss of people who do not believe you or just cannot handle your new reality, loss of faith in a medical system, or any of the many other losses that continue to come your way - we all experience loss.

So let’s support each other and navigate it together! We have some expert help.

Please join us for a virtual workshop on grief and chronic illness with Marisa Renee Lee, an award-winning advocate, writer, and speaker on coping with grief and loss of all forms. Lee’s book, Grief is Love, is about making space for the transformation that a significant loss requires.

We are excited to have Marisa Renee Lee bring her knowledge to our community in the form of this intimate workshop.

10/27/2025

Join us tomorrow- Oct. 28th at 3 pm ET for a virtual workshop! Get your ticket today. LINK IN BIO.
https://www.meaction.net/event-details/dealing-with-grief-and-chronic-illness-a-workshop-with-marisa-renee-lee

Grief and complex chronic illness go hand in hand. It could be the loss of the life you thought you would live, loss of people who do not believe you or just cannot handle your new reality, loss of faith in a medical system, or any of the many other losses that continue to come your way - we all experience loss.

So let’s support each other and navigate it together! We have some expert help.

Please join us for a virtual workshop on grief and chronic illness with Marisa Renee Lee, an award-winning advocate, writer, and speaker on coping with grief and loss of all forms. Lee’s book, Grief is Love, is about making space for the transformation that a significant loss requires.

We are excited to have Marisa Renee Lee bring her knowledge to our community in the form of this intimate workshop.



Reel description: Reel made from a simple graphic with purple background and minimal movement. Photo of author Marisa Renee Lee (a Black woman with a great big smile looking at the camera) and her book (title Grief is Love with purple/blue/pink/gold floral swirls) Text: Dealing with Grief and Chronic Illness Workshop. Virtual workshop Tuesday October 28th 3 pm ET. Marisa Renee Lee author of Grief is Love. Get your tickets!

10/23/2025

Sometimes we all need a reminder that we are kicking a$$- often by doing our best to listen to our bodies and aggressively rest. Link in comments.

Maybe we do not feel very kickass when we are just trying to survive - lying in a dark room with headphones on to protect ourselves from sounds and eye mask to protect from light. When we are doing our level best to take one breath in and the next one out. When our biggest exertion can only be rolling to a different side or maybe using a bedside toilet, we may not feel very tough.

But we know- that takes unimaginable strength. Those getting through those toughest days are having to use incredible strength to do so. They should not have to be. We should have learned how to treat this illness better by now. And we are fighting to change that!

Maybe you need the reminder that taking that rest time and pacing is exactly how you kick ass! Maybe you are at the point where you can leave the house occasionally and you want to show up to a protest as the real kick ass/ take naps person you are. Maybe you'd like a hoodie to wear to that medical appointment you have been waiting on for months.

Perhaps you have a friend that could use this reminder that you see them! Maybe you are a caregiver with a reminder that resting in between kicking ass as a caregiver is wise.

Each purchase helps support ’s critical programs. We have tees, hoodies, totes, mugs, water bottles, joggers, and more! Check them all out!

A huge thank you to @ JessNeedsToRest for this amazing design as well as many others and for modeling it for us! Jess, you are kicking ass!

10/22/2025

ACTION ALERT!

This Halloween is scarier than ever. If the federal government doesn't make changes to health care during this shutdown, then a lot of Americans WILL lose access to our healthcare as we know it. Ten million Americans are expected to get kicked off Medicaid - and our community is particularly vulnerable. The ACA premium hikes will steal affordable healthcare from even more.

This is grim - but it doesn’t have to stay that way. We are asking you to join us and fight back to save our healthcare this spooky season.

ACTION:
1. Dress up like something scary or hold a spooky sign- a ghoul, ghost, zombie, monster, anything you’d like.
2. Take a photo.
3. Post on social media using the hashtags:
4. Tag using the @ sign plus meactnet.

Sample post:

"This is a very SCARY time! We are people with ME/CFS & Long COVID that stand against the Medicaid cuts + ACA Premium increases. $1trillion in Medicaid cuts will harm millions. ACA premium hikes will steal affordable healthcare from tens of millions. Protecting the most vulnerable Americans is the only right thing to do. Call your members of Congress now."

TIMING: Let’s all post these between October 29th - November 1st to gain traction on social media.

If you are unable to join in creating a photo, please share ones from others! Let's show our social media strength!

If you are able, call or write your Congress Member and encourage others to do the same. Script here: https://www.meaction.net/medicaid

10/22/2025

Grief and complex chronic illness often go hand in hand. Join us on October 28th at 12 pm PT/ 3 pm ET/ 7 pm GMT for a virtual workshop with Marisa Renee Lee focusing on this important topic. https://www.meaction.net/event-details/dealing-with-grief-and-chronic-illness-a-workshop-with-marisa-renee-lee

We had a lovely free book reading and Q & A with Marisa Renee Lee and we look forward to diving into this issue together in a workshop format. Are you planning to attend? We hope to see you there! Grab your ticket now!

10/21/2025

Want to know what is happening with RECOVER-TLC, aka NIH’s Long COVID research program?

Check out our summary of the 2nd annual RECOVER-TLC research workshop that took place in September. Read the full summary here: https://bit.ly/RECOVER-TLC

RECOVER-TLC is currently funded at $300 million for FY2025 - 2029, and is an offshoot of the NIH’s original Long COVID research program, RECOVER.

At the workshop, NIH staff announced that RECOVER-TLC will fund four pharmaceutical drug treatment trials. NIH will begin clinical trials on the interventions low-dose naltrexone (LDN); glucagon-like peptide-1 receptor agonist (GLP-1) and stellate ganglion blocks (SGBs). It also expanded funding for an existing trial, called REVERSE-LC, on the drug baricitinib.

There was also an update on the RECOVER-CT clinical trials. Launched in 2023, eight different Phase II trials for adults are testing 13 interventions (pharmaceutical and non-pharmaceutical) across 100 sites. These trials are organized into five different categories of study they call “platforms.”

The workshop also gave an update on its observational cohorts - pediatric, pregnancy and adult. These cohorts are following large groups of people with Long COVID over time and collecting a lot of data and biospecimens.

Scientists discussed assays, biomarkers, pathogenesis and trial design, and specific projects outside the NIH that are investigating these areas. Our summary also discusses community perspective on what needs to happen next.

Read the full summary here: https://bit.ly/RECOVER-TLC

10/16/2025

We know a lot of people are wanting to participate in actions or protests right now. We have a Protest Guide for those with ME or other energy-limiting chronic disease to help! The first half focuses on creating a more accessible protest and the second half focuses on attending an in-person protest safely. Find it all at the LINK IN COMMENTS!

Everyone, please take care!



Video description: Short version: A series of slides take you through advice for before, during, and after protest for people with ME and other energy-limiting chronic disease.

Long version:
Slide 1 : Photo from Still Sick Still Fighting protest in DC. Text above: How to protest with ME (and other Energy-Limiting Chronic Diseases). Text below: Protest Guide available

Slide 2: Text: First. A reminder. However you can participate matters! And if right now your way to join in is by your survival - that is enough! That has to be the first and most important thing. You matter!
Actions that can be taken from home:
Calling elected officials
Petitions
Emails
Asking friends and family to join the movement
Donating to orgs
Sharing important news & actions

Slide 3: Text graphic with list of what to do before the protest.

Ask other able-bodied and disabled friends, allies, and caretakers to join with you in planning to join a protest safely
Learn what you can about the protest plan, directly from the organizer’s event page and communication
Direct important questions or needs to the protest organizer(s) ahead of time.
Secure a wheelchair/mobility aid and other needed aids, if you do not already have them
.Get a protest buddy(ies).
Prepare 2-3 contacts in case of emergency
If you can, publicize the protest through social media and your networks
As best as you can, pace out all these activities.
Slide 4: Small photo from DC protest of protestors lying on the sidewalk holding signs in front of the White House. Underneath is text: Day of Protest Scope out the landscape.

Prioritize self care and maintain boundaries.
Rest and Pace. Hydrate and take medicine as needed. Leave when you need

10/16/2025

We know a lot of people are wanting to participate in actions or protests right now. We have a Protest Guide for those with ME or other energy-limiting chronic disease to help! The first half focuses on creating a more accessible protest and the second half focuses on attending an in-person protest safely. Find it all here:https://www.meaction.net/_files/ugd/b5886a_fe193621603141e69f99eb59011e39e2.pdf

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! That has to be the first and most important thing.

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!

10/13/2025

is excited to announce we are partnering with the Writers Guild Initiative (WGI) again to offer creative writing workshops for people with ME and Long COVID. WGI has graciously donated their time to offer these writer workshops through personal mentorship with the writers of the community!

The workshops consist of three sessions during the first three Saturday’s of November 2025. Perfect time to get cozy and start writing!

The deadline to apply is Wednesday, October 22nd, 2025. Space is limited, and only 30 slots are available.

To learn more about the program and the dates, read the article here: https://www.meaction.net/post/apply-today-writers-guild-initiative-writing-workshops