Tessera

#MEAction NC @meactionnc.bsky.social · yesterday

Oooops, the link is incorrect. Please DM us for the link.

#MEAction NC@meactionnc.bsky.social · yesterday

Come to our @meactnet.bsky.social NC State Chapter Advocacy meeting TODAY at 11 am EST to learn more, hear from participants, see what else easy and slightly harder we might be planning next. Join info for today's Advocacy meeting. See you in 15 minutes. www.meaction.net/event-detail...

babs ✨@itsbabs.bsky.social · 2d ago

please don’t let NYC enclose outdoor dining!! being able to be maskless in the outdoor air is literally **the only way** many of us are able to patronize restaurants. even if you do dine indoors, please be an ally and send an email protecting open air seating. our dollar is good—when the air is!

Elana Levin@levin.bsky.social · 2d ago

I cannot afford to get Covid so I depend on outdoor dining to socialize. But Monday, there’s a NYC DOT hearing to change the rules so restaurants could fully enclose outdoor dining, thus defeating THE POINT of outdoor dining. Send a quick email to DOT before Mon? Here's a template email u can send👇

#MEAction NC @meactionnc.bsky.social · yesterday

Come to our @meactnet.bsky.social NC State Chapter Advocacy meeting TODAY at 11 am EST to learn more, hear from participants, see what else easy and slightly harder we might be planning next. Join info for today's Advocacy meeting. See you in 15 minutes. www.meaction.net/event-detail...

#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...

meaction.net

#MEAction Network@meactnet.bsky.social · 5d ago

Wow! Our 1st state action in our #PaceToTheCapitol is in the books! Way to go, MEAction North Carolina! @meactionnc.bsky.social organized our first Pace to the Capitol event with a focus on protecting Medicaid for North Carolinians with ME/CFS and Long COVID! www.meaction.net/post/pace-to...

#MEAction Network @meactnet.bsky.social · 5d ago

Wow! Our 1st state action in our #PaceToTheCapitol is in the books! Way to go, MEAction North Carolina! @meactionnc.bsky.social organized our first Pace to the Capitol event with a focus on protecting Medicaid for North Carolinians with ME/CFS and Long COVID! www.meaction.net/post/pace-to...

MEActMaryland @meactmaryland.bsky.social · 5d ago

Kicking off #PaceToTheCapitol with an event at their state capital, #MEAction North Carolina (@meactionnc.bsky.social) prioritized the Medicaid campaign So happy to see our "neighbor state" out & about - as we know the unseen costs of "showing up" & deeply appreciate their efforts today💙

#MEAction Network@meactnet.bsky.social · 5d ago

Wow! Our 1st state action in our #PaceToTheCapitol is in the books! Way to go, MEAction North Carolina! @meactionnc.bsky.social organized our first Pace to the Capitol event with a focus on protecting Medicaid for North Carolinians with ME/CFS and Long COVID! www.meaction.net/post/pace-to...

#MEAction Network @meactnet.bsky.social · 4d ago

Join MEAction in our Pace to the Capitol! Huge thanks to @meactionnc.bsky.social for starting us off so beautifully with our state events. Now it’s your turn! We need you to join us as we #PaceToTheCapitol! funraise.org/give/Myalgic... #pwME #MillionsMissing

#MEAction NC @meactionnc.bsky.social · 6d ago

Join us @meactnet.bsky.social NC State Chapter in Raleigh on November 3! #MEAction North Carolina is joining the national Pace to the Capitol campaign, and you're invited to join us! On Tuesday, 11/3 we're gathering at the North Carolina State Capitol in Raleigh to raise awareness of ME/CFS.

#MEAction NC @meactionnc.bsky.social · 3w ago

🍁 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.

#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...

meaction.net

#MEAction NC @meactionnc.bsky.social · 2mo ago

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 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...

meaction.net

#MEAction NC @meactionnc.bsky.social · 3mo ago

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 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...

meaction.net

Renegade Research @renegaderesearch.bsky.social · 3mo ago

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 🧵

Renegade Research @renegaderesearch.bsky.social · 4mo ago

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

#MEAction NC @meactionnc.bsky.social · 4mo ago

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.

Renegade Research@renegaderesearch.bsky.social · 4mo ago

1/ 🚨 Big news: @solveme.bsky.social has awarded @renegaderesearch.bsky.social a Catalyst Award to launch SIGNAL - a decentralized platform to test promising therapeutic devices for ME/CFS and Long COVID. Here's what it means for patients 🧵

MEActMaryland @meactmaryland.bsky.social · 4mo ago

Phenomenal descriptive piece on post exertional malaise #PEM

Fred Rossi@darthfoo.bsky.social · 8mo ago

Crashed hard, been gone weeks. Severe post-exertional malaise. Not resting by choice, resting because the alternative is worse. “Why I Can’t Just Meet You for Dinner” explains the economics of it. #PEM #LongCOVID #MECFS #PwME substack.com/@darthfoo/p-...

#MEAction Network @meactnet.bsky.social · 4mo ago

#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

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

#MEAction Network @meactnet.bsky.social · 4mo ago

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

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.”

#MEAction NC @meactionnc.bsky.social · 4mo ago

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 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...

meaction.net

#MEAction NC @meactionnc.bsky.social · 4mo ago

#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 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...

meaction.net

Elly Brosius, MS @ellybrosius.bsky.social · 5mo ago

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.

David Shiffman, Ph.D. 🦈@whysharksmatter.bsky.social · 5mo ago

If you don’t yet have a copy of my book Why Sharks Matter, Johns Hopkins University Press is offering 40% of all books with code H4JUL26 www.press.jhu.edu/books/title/...

valebodi.bsky.social @valebodi.bsky.social · 5mo ago

@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...

Participant Interactions – Cornell Center for Enervating NeuroImmune Disease

Participant Interactions

neuroimmune.cornell.edu

ME/CFS Science @mecfsscience.org · 5mo ago

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.

#MEAction Network @meactnet.bsky.social · 5mo ago

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

#MEAction NC @meactionnc.bsky.social · 5mo ago

💙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.

betsy ladyzhets 😷@betsyladyzhets.bsky.social · 5mo ago

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)!

Billy Hanlon @bhanlon15.bsky.social · 5mo ago

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...

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.

captimes.com

Sue Poncin @sueponcin.com · 5mo ago

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

Durham County Department of Public Health (DCoDPH)@durhamhealthnc.bsky.social · 5mo ago

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

Tom Kindlon @tomkindlon.bsky.social · 6mo ago

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

Holly L (First Grace28 at the other place) she/her @hollyl.bsky.social · 6mo ago

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

#MEAction NC @meactionnc.bsky.social · 6mo ago

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.

#MEAction NC@meactionnc.bsky.social · 6mo ago

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...