🧵Advocacy thread by our mid atlantic neighbors in MD. If you are a Maryland resident, and have a couple spoons to help out, please check it out.
12.03.2026 14:00
👍 2
🔁 0
💬 0
📌 0
🧵Advocacy thread by our mid atlantic neighbors in MD. If you are a Maryland resident, and have a couple spoons to help out, please check it out.
March 18:
Zoom/phone support for #MECFS, #LongCovid for
us, @MEActNet's NC State Chapter Support Group,
@CFSnova, & friends, allies, caregivers.
🫂 WED Mar 18, 2026 (3rd Sat., monthly)
🕧12:30 PM EDT US
We talk about post exertional symptom worsening (PESE) & PEM.
www.meaction.net/event-detail...
#MEActionNC is restarting Advocacy mtgs. 1st is this Sun, Mar 15, '26, 11 AM-12 PM, EDT US. We will discuss upcoming opportunities for action, big & small. We welcome all volunteers regardless of capacity.
For deets, link, call in #:
www.meaction.net/event-detail...
#LongCovidAwareness #MECFS
This event will be useful. Let's learn more about triple therapy, blood thinners OTC and prescription, LMW heparin in both syringe and in the pill form, and how not to get scammed by fake labs saying they can test for microclots.
This event will be useful. Let's learn more about triple therapy, blood thinners OTC and prescription, LMW heparin in both syringe and in the pill form, and how not to get scammed by fake labs saying they can test for microclots.
We get to watch and maybe ask questions of champions of our conditions discussing microclots, antiphospholipid syndrome, and hypercoagulabilty and symptoms that come from those, plus treatment.
Bring your friends!
Today! Come learn about ways to fix breathing in sleep so the chronic stress response lowers.
New panelists:
Bela Chheda, MD, Inf. disease & internist
Anil Rama, MD, neurology and sleep medicine
Kishan Tarpara, DO, neurologist & sleep medicine at Vanderbilt Autonomic Dysfunction Center
The March 2026 newsletter which includes our co-hosted event is going out very soon. Sign up if you want event and other news from @renegaderesearch.bsky.social
We're excited co-host on the 3/27 one titled
"GI-NeuroImmune Axis and the Role of Histamine and Mast Cells"
Speaker Zachary Spiritos, MD, MPH, NeuroGastroenterologist
Dr. Spiritos is a knowledgable and lively. His telehealth clinic, Ever Better Medicine, can see patients from IL & NC.
I designed these! 💞 Please boost these posts so our very deserving and #LongCovid and #MECFS communities (and all who care about us) can stay stylish while funding education, research, awareness and advocacy ❤️🩹
Excited to host this webinar with you!
Looking forward to co-hosting this event!
Yes, indeed! We are a co-host for this event with Zac Spiritos, MD, neurogastroenterologist.
He is the founder of the Ever Better Medicine (.health) clinic and can only take patients from IL or NC.
We have a few of his patients in our support group who have been pleased with their care.
Your brain does not store memories like videos. 🧠🧪
Memories are reconstructed each time you recall them through a process called reconsolidation. During this process, details can shift based on emotion, context, and new information, which is why memories can change over time.
Simple graphic urging you to sign the HHS letter today. Cream background with large red circle in the center. Text in center: Join over 1600 signers!! Sign letter to HHS today. Freakin' Frail and #MEaction logo at the top. Text underneath: Protect Medicaid access for people with ME/CFS and Long COVID! FreakinFrail.org
Can you sign & share our letter to HHS? freakinfrail.org
Thank you to the 1600 who have signed!
Congress has mandated that Medicaid recipients work 80 hours a month unless they can prove they are “medically frail." We want to protect Medicaid access for #pwME & #pwLC.
Nice store!
3X match of your gift today.
This group must keep going. They do vital work for a severely underserved and ill population.
Please donate today.
6 shirts and 2 mugs all with a design that says Invisible illness Visible Love. It has a heart and an outline of a heart connecting the two phrases. The #MEaction logo is in the corner. Tops clockwise starting in top left corner: Gray sweatshirt, purple tee, red hoodie, white mug with red handle, mauve shirt, teal shirt, red shirt, and mug with black handle.
To celebrate Family Caregivers Month, we’re unveiling brand-new shirts, sweatshirts, & mugs — created by caregivers for our community!
Our community came together — caregivers, volunteers, designers, friends — to create these items! Find them here: www.bonfire.com/store/meacti...
#InvisibleIllness
black square with gold frame. Gold glitter splash on the background. The words in cream, Light up a lantern. Image of a lantern in the center
Light Up A Lantern!
Everyone who gives $50+ to #MEAction fundraiser will have the ability to list a name on a lantern. You may light up a lantern in honor or in memory of someone else.
And, your donation will be DOUBLED thanks to a matching donation!
www.meaction.net/donate
This support meeting for ME/CFS, LC, people with PEM, is
TODAY!
9:30 AM Pacific US (Sorry)
11:30 AM Central US
12:30 PM Eastern US
5:30 GMT
Graphic about two upcoming Caregiving webinars with MEAction. Photo of Kim Moy (smiling Asian American woman with light-medium skin tone and graying hair, wearing a green sweater and multicolor scarf) and Denise Lopez-Majano (fair skinned, woman wearing glasses with graying, medium length hair wearing a light blue fleece top). Under each photo is their name and the name of the webinar along with dates Nov 16 and Nov. 22 both at 3 pm ET.
Sign up for these 2 workshops for #caregivers.
1. Nov. 16 @ 3 pm ET: 10 Lessons from 20 Years of Caregiving — Kim Moya
ow.ly/gtAP50XlbZb
2. Nov. 22 @ 3 pm ET: Chronic Illness Caregiving for Youth, Teen, & Adult Children — Denise Lopez-Majano ow.ly/3IcV50XlbZh
#pwME #ChronicIllness
lantern against a dark background with #MEAction logo and text underneath: be a lantern in the darkness
This year has been heavy—political whiplash, uncertainty, and real harm for our community. #MEAction is here, advocating on the ground.
Remember, HOPE is a sweet rebellion.
#MEAction is a lantern in the darkness.
We can only continue our work with your support. www.meaction.net/lantern-in-t...
A court case in North Carolina is holding skilled nursing facilities accountable to adopt anti-discrimination policies for those with a history of substance use.
Sally Friedman of the Legal Action Center explains why it could set a national precedent.
podcast.publichealth.jhu.edu/976-champion...
orange fox sits in the middle of the gray screen 2 trees with multi-colored autumnal leaves; one on each side of the screen. @meactmaryland.bsky.social logo bottom right corner Text reads Tues, Nov 4th @7pm Advocacy Meeting **New** Zoom Link in Bio
Tues, Nov 4th @7pm
Advocacy Meeting
**New** Zoom Link in Bio
#MEAction
#Advocacy
#MECFS
#LongCovid
Our next meeting is Nov 19 🗓️
NC @MEActNet Chapter SUPPORT Zoom is
Wed. 11/19/25, (3rd Wed every month)
12:30 PM ET US
We welcome those near & far with ME/CFS/POTS/OI/HSD +/- Long Covid(PASC), & caregivers, family, friends, allies.
Got PEM? We do, too.
www.meaction.net/event-detail...
Reminder - the Long COVID Treatment Trial - Tirzepatide (LoCITT-T) is open in 49 US states (all but Hawaii), DC, & PR.
More info & eligibility survey here:
longcovid.scripps.edu/locitt-t/?ut...
We're hosting a webinar w/ Q&A on 11/5, register here:
scrippsresearch.zoom.us/webinar/regi...
Graphic in soft colors with cream background. Text in center: Chronic Illness self care How will you practice self care today? Surrounding that text are graphics that match the suggestions listed under them. Starting in top left corner and going clockwise: Journal, say no without guilt, Remember you are worthy just as you are, meditate, wear your comfiest clothes, visit an art gallery from your bed, take 3 deep breaths, listen to something you enjoy, create art, snuggle up with a good book
We just finished the amazing workshop with Marisa Renee Lee focusing on grief & chronic illness. At least 7 countries were represented & we had an amazing time together.
We touched on the importance of finding joy & taking care of ourselves in the workshop so I thought I would add this reminder!
Two photos showing a brown-haired white woman and a blonde baby and brown-haired little girl dressed as vampires. Text: Scary Times. Save Medicaid Save ACA
This is a blood-sucking nightmare. But we can get out of it together. Our government needs to hear from us! Save #ACA. #SaveMedicaid. @MEActNet
Thanks to our executive director, Laurie Jones, & her daughters for joining in!
Contact Congress: www.meaction.net/medicaid
#pwME #Disability #LongCovid
Text New designs in our store. Check out our brand new designs and products! https://bit.ly/MEActionStore 6 product photos. Each shirt has #MEAction under the design: 1 Teal tee Text: If you're reading this I'm pacing 2 Red hoodie with graphic of a spoons Text: I saved my spoons for this 3. Black jersey Text: Kicking ass taking naps 4. Jade zip-up hoodie with small battery showing one bar left Text: low power mode 5. Red hoodie. Text Rest is best 6 Black joggers with #MEAction heart logo
We have so many amazing new designs and items available in our store! www.bonfire.com/store/meacti...
Ready for fall? We have hoodies, sweatshirts, & joggers galore! Want a hot cuppa? We have a mug for that!
Most designs were created by volunteer @hospmom.bsky.social. Thank you, Jess!
#pwME
I think the best thing I’ve ever done when it comes to my doctors’ appts is creating a FUNCAP timeline.
My husband and I sat down together and filled it out for different points in time.
It paints a clear picture of #MECFS and the dangers of post-exertional malaise.
