The #MEAction Network

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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.

The ME/CFS Exchange Webinar Series launches this Thursday- October 8th. Who is attending? First in the series will focus...
10/06/2026

The ME/CFS Exchange Webinar Series launches this Thursday- October 8th. Who is attending?

First in the series will focus on post-acute infection symptoms.
October 8th from 1 pm to 3 pm ET via Zoom.
Registration required: https://rtiorg.zoom.us/webinar/register/WN_7FrDcz58QtWn0IfMo9AWLQ #/registration

It is hosted by the National Institute of Neurological Disorders and Stroke (NINDS) in partnership with the ME/CFS Research Network (MECFSnet). "This quarterly webinar series will bring together researchers and experts from a variety of disciplines to share insights, foster collaboration, and help advance ME/CFS discovery."

Moderator/Speaker: Anthony Komaroff, MD, Harvard Medical School

Speakers:
- Robert Dantzer, DMV, PhD; The University of Texas MD Anderson Cancer Center

- Catherine Dulac, PhD; Harvard University

- Clifford Saper, MD, PhD; Beth Israel Deaconess Medical Center/Harvard Medical School

- Julie Williams, PhD; University of Pennsylvania, Perelman School of Medicine

It will be interesting to see what this new quarterly webinar will bring.



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SAVE THE DATES! November is National Family Caregivers Month and we are thrilled to bring you two new webinars focusing ...
10/05/2026

SAVE THE DATES! November is National Family Caregivers Month and we are thrilled to bring you two new webinars focusing on caregiving from our amazing volunteers Denise Lopez- Majano and Kim Moy.

"Things We Caregivers Wish We Had Known" will be a roundtable discussion facilitated by Denise Lopez-Majano on Sunday, November 1st at 3pm ET.

“Being on the Same Team: Strengthening Relationships Through Chronic Illness” with Kim Moy of Caregiver Wisdom on Sunday November 15th at 3 pm ET. This conversation is for both people living with ME/CFS, Long COVID, and related illnesses and the people who care for them.

We will be sharing the registration soon, so stay tuned!

SAVE THE DATES! November is National Family Caregivers Month and we are thrilled to bring you two new webinars focusing ...
10/02/2026

SAVE THE DATES! November is National Family Caregivers Month and we are thrilled to bring you two new webinars focusing on caregiving from our amazing volunteers Denise Lopez- Majano and Kim Moy.

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!)

"Things We Caregivers Wish We Had Known" will be a roundtable discussion facilitated by Denise Lopez-Majano on Sunday, November 1st at 3pm ET.

“Being on the Same Team: Strengthening Relationships Through Chronic Illness” with Kim Moy of Caregiver Wisdom on Sunday November 15th at 3 pm ET. This conversation is for both people living with ME/CFS, Long COVID, and related illnesses and the people who care for them.

We will be sharing the registration soon, so stay tuned!

We are delighted to bring you this new campaign at the request of our amazing caregiver volunteer Denise Lopez-Majano. D...
10/02/2026

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! https://www.meaction.net/post/70-acts-of-kindness-by-december-7th

If you commit an act of kindness in honor of this campaign, please comment on the article linked so we can help keep count towards the goal of 70. You do NOT have to share what the act of kindness was but you can if you like. Acts of kindness for yourself are very much encouraged and you can do more than one!

Denise especially wants the acts of kindness to be accessible to as many as possible. So check out the article for some great ideas for low battery/low energy levels.

This campaign grew out of Densie’s true passion for spreading kindness. Her life is a model of radical compassion and she wants to take this milestone birthday to spark a cascade of kindness to bring warmth and joy to the ME community.

Denise is involved in advocacy work with the Maryland and Pennsylvania chapters and she
facilitates one of MEAction’s monthly support calls for caregivers of people with ME and other
associated conditions.

We would love to hear your ideas for acts of kindness! Check out the amazing list started in the article. What speaks to you? What can you do for yourself and for others? Let’s get to 70 acts of kindness or more by the time Denise turns 70 on December 7th!



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Welcome to October! It is spooky season! We're excited to bring you a brand new art workshop on October 29th at 12 PM ES...
10/01/2026

Welcome to October! It is spooky season! We're excited to bring you a brand new art workshop on October 29th at 12 PM EST. We are going with a Halloween theme. One of our wonderful volunteers, Orion Romero, will host. https://www.meaction.net/event-details/orions-halloween-art-workshop

Orion is a person with ME/ CFS and a long time member of our narrative working group. When Orion is not helping us out at MEAction, they are an educator and artist. They have hosted galleries for us during Millions Missing to help share the word about ME/CFS.

The project will be an exercise to build figure drawing skills, with a Halloween theme! All you need is a pencil and paper, with enough paper for a few sketches. Please don't forget to register for this event. There is no deadline to register.



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MEAction’s Partner Caregiver Support Call led by Kim Moy of Caregiver Wisdom is coming up this Sunday, October 4th at 12...
10/01/2026

MEAction’s Partner Caregiver Support Call led by Kim Moy of Caregiver Wisdom is coming up this Sunday, October 4th at 12 pm PDT / 3 pm EDT / 8 pm BST. To join, email [email protected].

We have a first for you as longtime community member and caregiver Charley Kakel will lead our conversation focusing on Micro-Acts of Joy—the simple everyday moments that can nourish and sustain us amid the stresses and uncertainties of caregiving.

Charley’s wife lives with severe ME and if that name sounds familiar perhaps you read his writing, PenPals, that he shared in honor of this year. https://www.meaction.net/penpals

Our Partner Caregiver Support Call focuses on partner caregiving of loved ones with ME/CFS, Long COVID, and related illnesses, but all caregivers are warmly welcome.

We also have a monthly Caregiver call on the 3rd Saturday of each month. All caregivers are welcome at both.



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Dealing with Uncertainty and Chronic Illness -A Workshop with Marisa Renee Lee is now available to watch! https://youtu....
09/30/2026

Dealing with Uncertainty and Chronic Illness -A Workshop with Marisa Renee Lee is now available to watch! https://youtu.be/gopHHk_4R4c

We had such a meaningful and powerful time coming together as a community. Huge thanks to Lee leading this workshop!

Lee is the author or two amazing books: Grief is Love and Waiting for Dawn. We interviewed her about those releases. She also led a workshop focused on grief and chronic illness for us. All can be found on our YT.

More information about her most recent book, Waiting for Dawn, which is referenced in this workshop:
"Through rich, revelatory prose, Lee assists you in navigating life's unstable and overwhelming moments. Using research and her personal experiences, Marisa argues that self-preservation is necessary when life is at its worst. If you are experiencing pain, chronic stress, or loneliness or are burdened with self-doubt, Waiting for Dawn brings you from a place of instability to hope. Lee shares her two-year journey battling loss and illness the death of her mother-in-law, ongoing sickness, and the emotional challenges she endured that taught her that healing is about finding your own unique way through the darkness."

Lee has a retreat coming up November 13 - 15, 2026 for those suffering with loss, grief, and uncertainty. Find out more about all of this at her website marisa renee lee dot com



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MEpedia is going strong-- we just received notice that MEpedia reached 20,000 clicks from Google search in the past 28 d...
09/29/2026

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!

It is and we are back with Frail and Furious campaign* updates. We have been busy and we want to make sure we share th...
09/28/2026

It is and we are back with Frail and Furious campaign* updates. We have been busy and we want to make sure we share the wins along the way! Full info - L I N K in C O M M E N T S.

In the past weeks, MEAction advocates have been making real progress across the country.

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

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, and advocates have participated in stakeholder meetings and webinars in six states, bringing the voices and needs of people with ME/CFS and Long COVID into the rooms where these decisions are being made.

Our advocacy has opened new doors to advance recognition of ME/CFS, Long COVID, and other IACCs within state public health leadership.

A huge thank you to the advocates showing up!

Want to get involved? See article for full details and L I N K S.
- Do you have contacts at your state’s Department of Health? We are looking for warm contacts in many states so we can reach the right decision makers. Send tips to [email protected].
- Want to advocate for Medicaid access at your state’s stakeholder meetings? States are holding meetings and webinars about work requirement implementation this fall.
- Come to your state chapter’s meeting! Are you in a state without a chapter but want to get involved? Email [email protected].

Next week we will share more about our policy priorities so join us for another Medicaid Monday!

*New to this campaign? MEAction is leading the campaign to protect Medicaid access for people with ME/CFS, Long COVID, and other infection-associated chronic conditions (IACCs).

Have you checked out all the amazing things Pillow Writers has going on lately? I could barely fit one month on a graphi...
09/25/2026

Have you checked out all the amazing things Pillow Writers has going on lately? I could barely fit one month on a graphic! The best place to learn about each option is their site pillowwriters . wordpress .com.

For those going- wait what or who is Pillow Writers? Glad you asked!

Pillow Writers shares they are "an international ME/CFS writing community. Pillow Meetings are free and open to anyone with ME/CFS or Long Covid. Attendance is on an ad hoc basis. Our community supports a wide range of writing with different groups catering to a variety of interests."

MEAction was so excited to partner with longtime ME advocate and mother of a pwME, Bobbi Ausubel, to host a writing group for people with ME and Long COVID, Pillow Writers. And oh has it has grown!

They have two books out from the original Pillow Writers and one newly out from the daughter group WIMEL (what is myalgic encephalomyelitis like?). Those are all available & help support our work.

The original Pillow Writers group has added many variations including a Pillow Crafters and a Spanish language group. And how beautiful is what they are doing with Softest Pillows??? - We are missing some of our friends with Severe ME and would like to set aside a few minutes once a month to just say a very soft, very quiet, very slow but cheery “Hello!”

Please check it out and join in when or where able!

Sending all our love to all who have kept Pillow Writers growing all these years! You are truly awe-inspiring!

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

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