#MEAction NC

🍁 Happy Fall & Halloween 🎃 Y’all! @meactnet.bsky.social NC State Chapter Support Group is today, Wed, 10/21, 12:30 pm ET US. Open, paced convo on highs & lows of living with or with someone with ME/CFS or Long Covid. Details/Join info: www.meaction.net/event-detail... 🫂 Come 4 cyber hugs.

Just started.... 🍁 Sept ME/CFS, LC @meactnet.bsky.social NC Support Group Wed,9/17th, 12:30 pm ET US Join us for open, paced conversation on highs, lows, & in-betweens of living with or w/ someone w/ ME/CFS or Long Covid See link for join info www.meaction.net/event-detail...

Our Zoom/phone SUPPORT meeting is soon! 🫂 WED August 19, 2026 ( 3rd Wednesday, monthly) 🕧12:30 PM EDT US for talking about #MECFS, #LongCovid @meactnet.bsky.social NC State Chapter Support Group. Friends, allies, caregivers, and out-of-staters welcome. www.meaction.net/event-detail...

Join us for a Research Roundtable this week, "Patients to Researchers: Lived Experience" Friday, August 14 at 1 pm ET US #MECFS and #LongCovid patients will discuss their experiences to help researchers improve research projects and trials Register: us06web.zoom.us/webinar/regi... 1/2 🧵

Thank you so much! We are very excited for this new opportunity to help more patients

Fantastic new platform to help ME/CFS & Long COVID pts try t herapeuticdevices, return the devices so others may use them, and then share their data and stories about what they liked and didn't like. Try before you buy is awesome and not usually available. May this new platform grow.

Phenomenal descriptive piece on post exertional malaise #PEM

#MEAction is honored to bring you a new Severe ME Artists Project for 2026. It will feature work from those within the severe ME community and will be in recognition of Severe ME Day on August 8th! Full details: https://www.meaction.net/post/severe-me-artists-project-2026-call-for-entries

New article with advocacy efforts being taken to bring attention to Wired’s failure of journalistic ethics in its recent article about Long COVID. Scott Hugo, has filed a complaint to request a formal ethics investigation. MEAction has signed in support. https://ow.ly/FYJg50Znqbf

Zoom/phone SUPPORT meeting is soon. 🫂 WED July 15, 2026 ( 3rd Wednesday, monthly) 🕧12:30 PM EDT US for #MECFS, #LongCovid @meactnet.bsky.social's NC State Chapter Support Group. Friends, allies, caregivers, and out-of-staters welcome. www.meaction.net/event-detail...

Cool. Sharks! Books! Discounts! JHU press publishes Peter ROWE’s book on orthostatic intolerance which includes cases cCI and venous compress if some of you want to gift on to your doctor.

1) 🇳🇿 A survey in New Zealand among 333 ME/CFS and Long Covid patients found that half of the respondents had experienced food insecurity in the past 12 months.

It is Monday and that means it is time for #MedicaidMondays! Today we are sharing facts about Medicaid, upcoming changes, and how to take action. See our #FrailAndFurious campaign page here: www.meaction.net/frail-and-fu... #Disability #PwME #MECFS #LongCovid

💙Thank you, Blue Sunday supporters! After expenses, our Blue Sunday Tea Party for ME raised $1,658 for @solveme.bsky.social & @meactnet.bsky.social With matching funds, the impact is over $2,619! Thanks to all who donated, attended, & shared our event. ☕💙 #BlueSunday2026 #MillionsMissing #MECFS

For @thesicktimes.org, I'm looking to talk to a couple of people with Long COVID & related diseases who rely on COVID-19 wastewater data about how potential funding shortfalls for this surveillance may impact them. DM or email me (betsy@thesicktimes.org)!

The Capital Times (Madison, WI): 'The toll ME/CFS is taking on Wisconsin families is both significant and largely hidden.' 'The NIH Research Roadmap, approved in May 2024, is the first real federal answer to that failure.' captimes.com/opinion/gues...

An accurate picture of Long Covid too….

Did you know? Long COVID is recognized as a possible disability under the Americans with Disabilities Act. Talk to your doctor if after having COVID-19 you're experiencing new or ongoing symptoms limiting your daily life, & learn more about #LongCOVID as a disability: www.hhs.gov/civil-rights...

I was fortunate to experience a nice family #BlueSunday2026 #TeaPartyForME2026 celebration yesterday in aid of @irishmecfsassoc.bsky.social www.idonate.ie/fundraiser/B... Thanks to my mum for all the work she put in organising it and to everyone who attended. 👍👏 #MEcfs #PwME #CFS #BlueSunday

I am late with my #BlueSunday2026 post! I stopped in @meactionnc.bsky.social lovely virtual gathering but was too unwell to do the tea & treat. So I am sharing a picture of the blue sky I saw 2 weeks ago. (Once you spend years w/o seeing sky you cherish every time you see it!) #TeaPartyForME2026

Blue Sunday is tomorrow. Make your own tea party or join ours.

Blue Sunday ,The Tea Party for M.E., is tomorrow - May 17, 2026! Everyone is invited! A huge thank you to Anna Redshaw for creating this event. More info: https://ow.ly/BcyJ50Z0yxi #MEAction NC invites everyone at 1 pm. https://ow.ly/iYCA50Z0yxj #BlueSunday202 #TeaPartyForME2026

You will see me in the post below and, yes, I am medically frail like millions of pwME. I live between bed and bathroom, fearful that any life event could disrupt my tiny life. If we didn’t laugh a bit, we would have to cry. But after a laugh, make sure that you have signed the letter to HHS below.

e. hashman has made this incredibly generous offer that applies to any #MEAction donation. Just reach out to them with your donation and they'll match it! bsky.app/profile/eha....

We’re celebrating these wins at a Virtual Blue Sunday Tea Party for ME on 5/17 @ 1PM ET. All invited! Tea & cozy fun. Join us! (Optional $5 donation, no box req’d. See $30 tea/treat box info below.) #BlueSunday #mecfs #MEAction #MillionsMissing 2/3 www.meaction.net/event-detail...

Today is LAST DAY to order tea & treats box (food or no food, gluten/dairy or not, $30 donation) for our May 17, '26 💙 Blue Sunday Zoom / fundraiser Tea social. Time with folks who get it, who might have helpful ideas for LIFEwME. Zoom registration up to end of event, donations optional for that.

Fantastic news from our friends at @meactionnc.bsky.social ! Thank you to all the advocates who made this happen, and thank you to NC Governor Josh Stein for helping to raise awareness of #MECFS!

Really important features for People with M.E. and L.C.

Looking for a good tracker for symptoms and meds, this new one is awesome. One of our members has tried it.

Check out the Zolia Health Symptom Log's iOS or Android version. It is a NEW tracker for sx, meds, & other stuff. Great for seeing if treatments work, to remember when you start & stop taking meds, to follow certain symptoms. Log in seconds! Symptoms, Meds, Notes, Factors, Vitals, Events, Ratings.

If you want the box of tea and goodies, sign up by May 8. Can sign up for the zoomUp until The 17th.

Ask Ben (#MEAction 's US Advocacy Director) Anything About Medicaid Tues, 3pm ET live on IG Like... What would our community want the medically frail recommendations to include if we were designing things?

This is really encouraging! Diagnosis and Management of #MECFS received the second most citations in my 'department' last week-- meaning from Stanford University authors. The work we've done continues to have outsized impact, years after its release. 🧪 www.mayoclinicproceedings.org/article/S002...

##BlueSundayForME May 17th at 1pmET Virtual tea party thrown by @meactionnc.bsky.social Donation optional *LIMITED* number of out of state tea party boxes (no food) available as well... We're looking forward to it!

Congrats on the mayoral proclamation & support from the Governor!

Troy University: 'Design student’s PSA wins silver at Regional Competition' 'Ileana Lampon was the only student from Troy who was recognized at the regional level for her stop-motion video “POTS: Got Salt” ...that brings attention to people who have..POTS' today.troy.edu/news/design-...

Next Zoom/phone support meeting is May 20 for #MECFS, #LongCovid. @meactnet.bsky.social NC State Chapter Support Group, friends, allies, caregivers. 🫂 WED May 20, 2026 (3rd Wednesday, monthly) 🕧12:30 PM EDT US www.meaction.net/event-detail...

TODAY April 15: Zoom/phone support meeting for #MECFS, #LongCovid. MEAction NC State Chapter Support Group, friends, allies, caregivers. 🫂 WED Apr 15, 2026 (3rd Wednesday, monthly) 🕧12:30 PM EDT US www.meaction.net/event-detail...

Happening now...

#MEActionNC is Advocacy meeting tomorrow! Sat, Apr 11, 2026 11a -12p, Eastern US We will discuss opportunities for action, big & small. We welcome all volunteers regardless of capacity. For deets, link, call in #, use last month's mtg announcement: www.meaction.net/event-detail...

Fantastic he’s our patron and so glad we have so much in common. Our webinar with him is on our website :)

Thank you, Dr. Spiritos. Great invitation to our event. We'll see you later!

LOL he *whispers "and IBS." Busting the myths of IBS!!! Yes. This is going to be breath-giving, itch-relieving, moving in general and for bowels, and overall amazeballs. TY to @renegaderesearch.bsky.social for allowing me to volunteer some on this one.

Just 4 days away now. Hope people are enjoying Dr. Zac's Instagram/Tiktok for frequent short videos with music & humor to teach about POTS, Hypermobility, fatigue, brain fog, post infection issues, GERD, silent reflux, burning tongue, IBS, and MCAS, MCAS, MCAS. On Friday we get at least 90 mins.😀