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

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...

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...

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!

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

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.

We are offering one time payments to disabled folks in the South who will not receive their SNAP benefits this month. If you need help, please find more information and details at ndsdj.org/snaphelp. If you’d like to donate to the fund, go to ndsdj.org/snapdonate We take care of each other ❤️

The objectives of this #MedEd webinar: 1) Joint hypermobility & Ehlers-Danlos Syndrome are risk factors for ME/CFS, orthostatic intolerance, & structural dysfunctions 2)Symptoms can be provoked by application of a neural strain 3) Adverse neural tension & neural tension dysfunction.

In 2023, @katboniface.bsky.social, #TheGlutamateBoss, delighted us with her glutamate studies and carving of the glutamate molecule. To support our community outreach and research, please make a donation! 🙏 (Tax-deductible if permitted by law.) www.zeffy.com/fundraising/...

You can also get creative in other ways! Paintings, drawings, poems, description of a pumpkin you would carve or other crafts you would want to do if able, photographs of fall trees and foliage, other creative expressions are all welcomed. Post with the hashtag #ScareME. bsky.app/profile/z3r0...

Miss our X Space for Dysautonomia Awareness Month and POTS Awareness Day on October 25? Listen to the recordings! We chatted about coping, types of dysautonomias and POTS, treatments, tests, tips, products Part 1: x.com/RenegadeRes/... and Part 2 (our internet dropped out): x.com/RenegadeRes/...

Join us once again for an informal @renegaderesearch.bsky.social Halloween art celebration! Carving not required (see thread for details.) No prizes in 2025. Rewards still include bragging rights, endorphins, and doing something fun. Post with the hashtag #ScareME.

Domestic violence shelters are losing their funding right now at an astonishing rate. Just heard that in Arkansas 25 shelters are shutting down due to lack of funds?! If you have the means, donate to your local shelter. This site has a lookup: www.domesticshelters.org

Oct 21 | 1:00 pm MDT Support Group: Parenting w/ Chronic Illness 💙 We’ll share challenges, strengths, & what we hope our kids learn as they watch us face disease. Free & open to all → https://bit.ly/4nJnk3o #MECFS #LongCOVID #Parenting #SupportGroups

Tomorrow Tuesday, October 21st @ 4pm ET Community Support Zoom #MEAction Maryland "Come As You Are" We've got new zoom links, so email us or check or link tree (in bio). #MECFS #LongCovid #CommunitySupport

Micro-dosing GLP-1/GIP RA Tx in ME/CFS & Long Covid with @kaufmanmd.bsky.social @ruhoy.bsky.social & Tania Dempsey, MD. 2 pm ET USA, Friday, Oct 17, 2025 A Clinician's Roundtable by @renegaderesearch.bsky.social Recording posted to YouTube soon. us06web.zoom.us/webinar/regi... #MedSky

Even as COVID-19 spreads at high rates, some businesses are trying to force workers to unmask. The Sick Times spoke with 5 workers affected by anti-mask attitudes in their workplaces, as well as organizers and a disability law expert, about how to push back against these policies. bit.ly/3WEZOcb

October Meeting Day Today 🗓️ @MEActNet's North Carolina (NC) Chapter Support SUPPORT Zoom Wed. 10/15/25, (3rd Wed every month) 12:30 PM ET USA We welcome those near & far with ME/CFS/POTS/OI +/- Long Covid(PASC), & caregivers, family, friends, allies. www.meaction.net/event-detail...

Meeting Day Today 🗓️ @MEActNet's North Carolina (NC) Chapter Support SUPPORT Zoom Wed. 9/17/25, (3rd Wed every month) 12:30 PM ET. We welcome those near & far with ME/CFS/POTS/OI +/- Long Covid(PASC), & caregivers, family, friends, allies. www.meactions.org/event-detail...

This 30+ minute zoom starts in 50 minutes. ME/CFS Program to look at symptoms, treatments, your previous tests, history, genes, and make more sense of it and find targeted aides.

CT Insider: '‘Razor throat’ COVID: What to know about the new variant and a summer spike' 'Wu said it can still potentially cause unexpected complications for healthy adults and children or lead to more acute problems down the line, like long COVID' www.ctinsider.com/connecticut/...

This is awful. This clinic was a success and people traveled to it from all over the state and from other states too. The docs there would tell folks about our support group @sentills.bsky.social and Sen Budd offices wont even meet for @solveme.bsky.social Senate constituent meetings today.

UNC closed its Long COVID clinic last week after its federal funding ran out. It was the sole #LongCovid clinic in North Carolina. The clinic has been a lifeline to thousands of people living with Long COVID, ME/CFS and POTS since it opened in 2021.

#MEAction North Carolina is encouraging residents to call their Congress Members to ask for funding. Spread the word on social media. They have templates to help with this! Check them out here: tinyurl.com/4yf74zd2

#MEAction also sent out a press release about the closing of the clinic - read here: bit.ly/44tKkMP

The Raleigh News and Observer reported on the closing of the UNC Long COVID clinic after #MEAction North Carolina alerted the press last week. Read article here - bit.ly/43Wlvcl - or here (without subscription): archive.ph/tQ1ff

“I got sick at 33 and I’m turning 39 next month… and the Long COVID clinic has been just a lifesaver,” Gillian Lizars told The Charlotte Observer. “I’m concerned for incoming patients who are on their fifth, sixth, 10th COVID infection, developing Long COVID..."

While a few clinicians have offered to see Long Covid patients as they return to their original departments, several critical services will no longer be offered to patients: disability paperwork, prior authorizations, referrals outside the local area, and social worker support.

TODAY. We cope together. Laugh together. Tear up together. Find help & helpers together. Sharing our experience & information together lifts us up. And it saves energy + time finding next treatment or test. Support group success depends on right mix of facilitators + visitors. This group rocks!

To learn more about ME/CFS, check out: Bateman Horne Center (www.batemanhornecenter.org). MEAction Network (www.meaction.net), Open Medicine Foundation (www.omf.ngo), Solve M.E. (www.solvecfs.org) #StandByMEcfs #StillSickStillFighting #MillionsMissing

WEDNESDAY JUNE 18 12:30 PM Eastern Join @meactnet.bsky.social's North Carolina Chapter for a monthly support call on the 3rd Wednesday of the month at 12:30 PM ET. We welcome people with ME/CFS or Long Covid, along with their caregivers, family, friends, allies. www.meactions.org/event-detail...

Our meeting starts in 10 minutes….

💙 TODAY: May 21, 2025 - our ME/CFS/LC zoom support 🫂meeting ( 3rd Wed. of mo.), at 12:30p ET US. 💙 Patients with #MECFS and #LongCovid, allies, caregivers welcome. 💙 Let's double our joys and successes and halve our worries and setbacks by sharing & caring. 💙 www.meactions.org/event-detail...

If a foreign adversary snuck into our Federal budget and cut science research and education the way we’re cutting it ourselves — strategically undermining America’s long-term health, wealth, and security — we would likely consider it an act of war.

Concert to raise awareness of M.E. and funds for Smile For ME and ME Research UK, organised by Isaac, whose sister is bedridden and tube-fed due to #MyalgicEncephalomyelitis: #Myalgicencephalomyelitis #SevereME #MECFS #BlueSunday #BlueSundayforMETheConcert

Ahead of #BlueSunday #MECFS Isaac Greer @drjogreer.bsky.social is raising money for research into ME/CFS www.eventbrite.co.uk/e/blue-sunda...

Today is Blue Sunday for #MECFS Support #MECFS Biomarker projects directly. Please donate to the largest ME/CFS Biomarker study Help make a ME/CFS diagnostic test a reality tinyurl.com/BlueOMFBioQu... #pwME #MillionsMissing #BlueSunday

Happy Blue Sunday love Smile For ME 🩵 We’re enjoying iced cookies and wearing blue. How are you joining in? Thank you to those choosing to support Smile For ME. Donate: smileforme.org.uk/bluesunday #BlueSunday2025 #TeaPartyForME2025

Happy #BlueSunday #TeaPartyForME2025 I hope you have as comfortable a day as possible, can wear something blue, and experience something lovely, be that taste, touch, hear, smell, or sight, I hope some loveliness finds you. #TeaPartyforME Keep going everyone, you’re such a strong community.

2/ Yesterday I posted how my mum decorated the table for #blueSunday. Here's today's spread. We are doing it in aid of @irishmecfsassoc.bsky.social idonate.ie/event/BlueSu... but other worthy charities other worthy charities are listed here the-slow-lane.com/donation-pag... ) #BlueSunday2025

Aujourd'hui c'est le goûter géant tout en bleu pour inonder d’une vague bleue sur les Réseaux Sociaux et sensibiliser à l'#EncephalomyeliteMyalgique ! Voici donc ma participation avec cette photo prise cette semaine en sortant d'un RV (pourri) à l'hôpital. #gouterbleu2025 #BlueSunday

Check out the virtual #BlueSunday gathering by @meactmaryland.bsky.social! Details below! Thank you #MEAction Maryland! #MEAction Georgia also has a Blue Sunday gathering with a virtual option. #pwME #MyalgicEncephalomyelitis #MillionsMissing

Kim runs our Partner Caregiver Support grouo. They meet virtually on the 1st Sunday of the month. Kim or a fellow caregiver gives a short presentation on a caregiving topic, & then meet in small breakout rooms to connect with other caregivers. Thank you, Kim! www.meactions.org/event-detail...

📣 TODAY! This will be a very dynamic webinar about #longCovid and #MECFS. ✅️ Join us at 1pm Eastern on Zoom to hear how 2 medical doctors deal with the challenges, tests and treatment. 🔗 Register now at us06web.zoom.us/webinar/regi... @RTHM_Health and @doc4care.bsky.social #medSky

Do sign up on the zoom page (link above) to get your copy of the New ME/CFS, LC, & IACC Clinical Care Guide by the very awesome resource generating @batemanhornecenter.bsky.social.

New! Clinical Care Guide for #MECFS, Long COVID, & IACCs—a practical, evidence-based guide for healthcare providers drops May 9 by @batemanhornecenter.bsky.social Real-world insights from expert clinicians for improving diagnosis & care! Reserve a copy: batemanhornecenter.org/clinical-care-guide/