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#MEAction NC @meactionnc.bsky.social · 16/09/2026

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...

meaction.net

#MEAction North Carolina Support Call | #MEAction

Please join us for our monthly #MEAction NC support call, every 3rd Wednesday of the month at 12:30 PM Eastern. All people with ME/CFS or Long Covid and their caregivers or family are welcome! Click...

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#MEAction NC @meactionnc.bsky.social · 19/08/2026

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...

meaction.net

#MEAction North Carolina Support Call | #MEAction

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Renegade Research @renegaderesearch.bsky.social · 10/08/2026

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 🧵

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Renegade Research @renegaderesearch.bsky.social · 22/07/2026

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

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#MEAction NC @meactionnc.bsky.social · 20/07/2026

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.

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MEActMaryland @meactmaryland.bsky.social · 29/06/2026

Phenomenal descriptive piece on post exertional malaise #PEM

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#MEAction Network @meactnet.bsky.social · 11/07/2026

#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: www.meaction.net/post/severe-me-art…

Announcement for the Severe ME Artists Project 2026 with a July 24th entry deadline and website details. Background in watercolors using peach, white and minty teal. Text: Severe ME Artists Project 2026 Deadline to enter July 24th Details on our website. #MEAction

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#MEAction Network @meactnet.bsky.social · 14/07/2026

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. ow.ly/FYJg50Znqbf

Stack of magazines with headline "#MEAction supports complaint filed about harmful Wired article" Quote from Scott Hugo underneath headline: “We are not requesting your organization to resolve legitimate scientific disagreement, or to pronounce on the mechanisms of Long COVID itself; instead, we are requesting that you assess whether the article and Wired’s subsequent response complied with journalistic standards for accuracy, context, fairness, transparency, and accountability.”

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#MEAction NC @meactionnc.bsky.social · 14/07/2026

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...

meaction.net

#MEAction North Carolina Support Call | #MEAction

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#MEAction NC @meactionnc.bsky.social · 01/07/2026

#MEActionNC Advocacy mtg soon! FRI., July 3 2026 11a -12:30p, Eastern US Opportunities for action, big & small. All volunteers welcome regardless of capacity. #Medicaid 👀 & more For deets, link, call in #, the announcement: www.meaction.net/event-detail...

meaction.net

#MEAction North Carolina Advocacy Call | #MEAction

Please join us for our regular #MEActionNC Advocacy meeting on the 1st Saturday of every month at 11:00 AM! All people with ME/CFS or Long COVID, caregivers, and healthy allies are invited. Click for...

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Elly Brosius, MS @ellybrosius.bsky.social · 24/06/2026

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.

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valebodi.bsky.social @valebodi.bsky.social · 22/06/2026

@cornellmecfs.bsky.social is seeking 40 participants with pre 2020 #ME/CFS and 20 healthy controls, to take part in an important NIH funded research study which involves a muscle biopsy neuroimmune.cornell.edu/research/par...

neuroimmune.cornell.edu

Participant Interactions – Cornell Center for Enervating NeuroImmune Disease

Participant Interactions

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ME/CFS Science @mecfsscience.org · 23/06/2026

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.

Table 3. Prevalence of food insecurity in the previous 12 months, according to disease severity, among 333 people with ME/CFS or Long Covid.

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#MEAction Network @meactnet.bsky.social · 22/06/2026

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

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#MEAction NC @meactionnc.bsky.social · 23/06/2026

💙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

A heart shape filled in with blue china tea cups, forget-me-nots, and a blue piggy bank at the center. The Piggy has a sign hanging from neck saying "Thank You" and a blue bow. At the bottom in the heart is blue ME/CFS awareness ribbon. The text and logs say #MEActionNC raised $829 for SolveME and $829 for #MEAction for a total of $1659 for their Blue Sunday fundraiser.

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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 22/06/2026

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)!

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Billy Hanlon @bhanlon15.bsky.social · 23/06/2026

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...

captimes.com

Opinion | Chronic fatigue sufferers need Congress to act now

Christopher J. Ford: A plan to diagnose and treat myalgic encephalomyelitis/chronic fatigue syndrome, which affects millions of Americans, awaits federal funding.

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Sue Poncin @sueponcin.com · 16/06/2026

An accurate picture of Long Covid too….

A graphic from The Pots Life of seven vertical spoons each with a different amount of liquid colored in turquoise with one word under each spoon: MY BEST ISNT THE SAME EVERY DAY

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Durham County Department of Public Health (DCoDPH) @durhamhealthnc.bsky.social · 28/05/2026

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...

Long COVID (also known as post-COVID conditions) is wide range of symptoms and conditions that can last weeks, months, or even years after COVID-19 illness. What are the symptoms of long covid? Long COVID symptoms might be a continuation of symptoms from your initial illness, like a cough lasting several weeks or more, or might be new symptoms. Common symptoms include extreme fatigue, problems with memory or thinking, and difficulty breathing. More than 200 symptoms of Long COVID have been identified. Long COVID can also affect multiple organ systems in your body, increasing your risk of heart attack, stroke, blood clots, and more. Who is at risk of getting long covid? Anyone can develop Long COVID. People of all ages and genders are living with Long COVID, even if they previously had no other health conditions or if they only experienced mild symptoms while sick with COVID-19. The CDC estimates that about 1 in 5 adults who get COVID-19 will develop Long COVID.

Recovering from COVID-19 once does not mean you can’t develop Long COVID if you are infected again. Getting COVID-19 repeatedly increases your risk of Long COVID. What should i do if i think i have long covid? Talk to your doctor if you are experiencing new or ongoing symptoms in the weeks after having COVID-19. Long COVID may require comprehensive care or cause disability. Although there is currently no cure for Long COVID, treatments may help you manage your symptoms.

Long COVID disability is a recognized disability by the Americans with Disabilities Act. If you are unable to work due to Long COVID, you may be eligible to apply for Social Security Disability Insurance benefits.
how can I prevent long covid? The only sure way to prevent Long COVID is to avoid COVID-19. According to the CDC, research suggests that vaccination can also help prevent Long COVID.

Prevent Long COVID by preventing COVID-19: Wear masks
Improve ventilation in indoor spaces
Stay up to date on COVID-19 vaccines

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Tom Kindlon @tomkindlon.bsky.social · 18/05/2026

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

Photo of 11 smiling people around a decorated table with food for a tea party

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Holly L (First Grace28 at the other place) she/her @hollyl.bsky.social · 18/05/2026

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

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#MEAction NC @meactionnc.bsky.social · 17/05/2026

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

Laptop on a table with a diverse group of 4 people enjoying tea along with the person at computer who is wearing blue pajamas.

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#MEAction Network @meactnet.bsky.social · 16/05/2026

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: ow.ly/BcyJ50Z0yxi #MEAction NC invites everyone at 1 pm. ow.ly/iYCA50Z0yxj #BlueSunday202 #TeaPartyForME2026

Invitation for Blue Sunday tea party on May 17, 2026, featuring a blue floral teacup and saucer with a handwritten 'you're invited' note.

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 13/05/2026

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.

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 13/05/2026

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....

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#MEAction NC @meactionnc.bsky.social · 29/04/2026

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...

meaction.net

Blue Sunday Tea Party | #MEAction

#MEAction NC is having a tea party and you’re invited! Click for details.

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#MEAction NC @meactionnc.bsky.social · 08/05/2026

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.

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Solve M.E. @solveme.bsky.social · 07/05/2026

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!

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#MEAction NC @meactionnc.bsky.social · 06/05/2026

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

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#MEAction NC @meactionnc.bsky.social · 06/05/2026

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

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Elly Brosius, MS @ellybrosius.bsky.social · 06/05/2026

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.

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#MEAction NC @meactionnc.bsky.social · 05/05/2026

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

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MEActMaryland @meactmaryland.bsky.social · 04/05/2026

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?

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 01/05/2026

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...

From ResearchGate:

Great work, Jaime!
With 7 new citations, your article was the second-most-cited research item from your department last month
Achieved on March 31, 2026
Article: Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

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MEActMaryland @meactmaryland.bsky.social · 30/04/2026

##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!

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MEActMaryland @meactmaryland.bsky.social · 30/04/2026

Congrats on the mayoral proclamation & support from the Governor!

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#MEAction NC @meactionnc.bsky.social · 29/04/2026

Big news for ME awareness in NC 📣🧵 1️⃣ Raleigh mayoral proclamation recognizes 5/12 as ME Awareness Day 2️⃣ Governor Stein gives letter of support 3️⃣ Our Blue Sunday event is May 17 Officials noticing ME/CFS disables millions. We need a cure. #MillionsMissing #mecfs #MEAction 1/3

Blue background vertical rectangle with words Big News! Also party hat and hands up emojis.

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Billy Hanlon @bhanlon15.bsky.social · 23/04/2026

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-...

today.troy.edu

Design student's PSA wins silver at Regional Competition - Troy Today

In February, 12 Troy University graphic design students were honored in Montgomery at the 2026 American Advertising Awards for their contributions in advertising, design, illustration, photography, vi...

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#MEAction NC @meactionnc.bsky.social · 23/04/2026

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...

meaction.net

Event Details & Registration | #MEAction

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#MEAction NC @meactionnc.bsky.social · 15/04/2026

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...

meaction.net

#MEAction North Carolina Support Call | #MEAction

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#MEAction NC @meactionnc.bsky.social · 10/04/2026

#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...

meaction.net

#MEAction North Carolina Advocacy Meeting | #MEAction

Please join us for a #MEActionNC Advocacy meeting on March 15 at 11 am. All people with ME/CFS or Long Covid, caregivers, and healthy allies are invited. Click for details.

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SEDSConnective @sedsconnective.org · 27/03/2026

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

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#MEAction NC @meactionnc.bsky.social · 27/03/2026

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

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Elly Brosius, MS @ellybrosius.bsky.social · 27/03/2026

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.

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#MEAction NC @meactionnc.bsky.social · 24/03/2026

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.😀

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#MEAction NC @meactionnc.bsky.social · 18/03/2026

Today. In 30 minutes. Hope to see you.

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#MEAction NC @meactionnc.bsky.social · 15/03/2026

Happening now: Long Covid Awareness and Advocacy topics. Help for figuring out easy ways to participate.

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#MEAction NC @meactionnc.bsky.social · 12/03/2026

🧵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.

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#MEAction NC @meactionnc.bsky.social · 12/03/2026

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...

meaction.net

#MEAction North Carolina Support Call | #MEAction

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