iiinova — where your digital self keeps evolving

Reposted by Elly Brosius, MS

#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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Reposted by Elly Brosius, MS

JustAnne @smartpatient.bsky.social · 31/08/2026

A health journal does not need to be perfect to be useful. Try one quick note today: symptom, severity, and what changed before it showed up. Tiny records can make appointments easier. #SymptomTracking #HealthJournal #InvisibleIllness #PatientAdvocacy

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Reposted by Elly Brosius, MS

Renegade Research @renegaderesearch.bsky.social · 20/08/2026

Don't forget to register for our Research Roundtable tomorrow! Registration link in the post below ⬇️

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Elly Brosius, MS @ellybrosius.bsky.social · 19/08/2026

Monthly Support meeting time soon.

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Reposted by Elly Brosius, MS

Richelle Sepulveda @richellesepulveda.bsky.social · 14/08/2026

This is a hard one for me to answer, as whenever I tell a funny story from childhood people look at me with shock and horror. They will often then say, "I'm sorry that happened to you." Like falling out of a moving vehicle on the highway when I was 5, CO poisoning when I was 10, etc.

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Reposted by Elly Brosius, MS

Renegade Research @renegaderesearch.bsky.social · 14/08/2026

We're excited to share one of our project's results in this upcoming Research Roundtable: "Vagus Nerve Stimulation Informal Tracking Project for ME/CFS and Long Covid" Friday August 21, 2026 at 11 am PT US, 2 pm ET US and 7 pm UK Register: us06web.zoom.us/webinar/regi... 1/3 #LongCovid #MECFS

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Elly Brosius, MS @ellybrosius.bsky.social · 13/08/2026

When to patients get to really share deep stuff that could speak new research or improve current research with researchers like this? ⁉️❔❓❗️❕‼️❣️ 💛 #MECFS I hope you can join us or catch the recording in @renegaderesearch.bsky.social YouTube Live channel.

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Elly Brosius, MS @ellybrosius.bsky.social · 11/08/2026

#capillariscopy from @renegaderesearch.bsky.social #InnovationInn nail capillariscope from my PEM day (Sat). Less perfused then before day was my impression. Similar odd shapes. Weird horizontal vessels. @immunofever.bsky.social Good thing had 2 vein repair procedures or could have been worse.

Fingernail bed close up with tortuous capillaries

Instruction card of important features of Healthy Capillaries with examples of problems as observed in the MAESTRO study. Examples include leaking, swelling/inflammation, irregular shape, and low perfusion.

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Elly Brosius, MS @ellybrosius.bsky.social · 10/08/2026

Here are my RightEye test Pursuits before exertion score of 81, next day in hyper-time post-exertion before PEM score of 73 (PESE), in PEM score is 28! Left eye sliding down, less circular, less consistent, more wiggly with each time around the circle. #InnovationInn @renegaderesearch.bsky.social

RightEye test. Traces of Circles followed by each eye. Even vertically and wiggle size. On target. A little wobbly around each circle.

RightEye test. Traces of Circles followed by each eye. Left eye dropping bellow the target circle a little, wiggle size more, especially on left. A little wobbly around each circle. Day after induce PEM.

RightEye test.Traces of Circles followed by each eye. Left eye dropping well below the target circle, wiggle size larger both eyes, especially on left. Very wobbly around each circle, more on left. 2 Day after induce PEM. Left eye now a diagonal oval.

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Reposted by Elly Brosius, MS

Janel Comeau 🍁 @verybadllama.bsky.social · 10/08/2026

me: hey do you have this movie I want to watch? Disney: no Netflix: not anymore Apple: ew no CBC Gem: yes and it’s free Prime: maybe I do, maybe I don’t. Maybe it costs $5 for no reason, even though you already pay for this. Maybe you should fuck off into the sun.

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Reposted by Elly Brosius, MS

Thomas F. Varley @thosvarley.bsky.social · 10/08/2026

Got to spin fire for the first time in a long time - definitely a little rusty but it felt great to burn ❤️‍🔥

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Elly Brosius, MS @ellybrosius.bsky.social · 08/08/2026

Quick pose bcI don’t want to stand still when don’t have to! #OrthostaticIntolerance Superman stance 4 @renegaderesearch.bsky.social #InnovationInn with muscle @MoxyMonitor. Hoping 4 good PEM data SOS bc #millionsmissing need more help, mild- #severeME @meactnet.bsky.social #severeMEday #MECFS

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Elly Brosius, MS @ellybrosius.bsky.social · 04/08/2026

We are being cautious with foods that are known sensitivities at @renegaderesearch.bsky.social #InnovationInn as best we can. Gluten free for all. Dairy free for some. High salt, potassium as needed. Organic when available. Garden stuff, too. Also ordering clean prepared meals to save energy/time.

Pretty dinner plate with yellow and blue teapot design with eggs, quinoa bread with ghee and sautéed zucchini.

Prepared meal packaged with labels in French. Dish of produce behind.

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Elly Brosius, MS @ellybrosius.bsky.social · 03/08/2026

Stuck on tarmac heading to #InnovationInn. Pilot has air conditioning on + my seat fan is on. Brrr. Just the way I need it to lessen OI symptoms. Feet are propped up and using my @renegaderesearch.bsky.social hoodie for lumbar support so I can slouch. Pre loaded Na, K. Did I pack everything🤔? No😢

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Reposted by Elly Brosius, MS

Renegade Research @renegaderesearch.bsky.social · 01/08/2026

3 days until our patient-researchers gathers at #InnovationInn to measure before, during & after PEM as much as we can! 🧪 We're reaching limits to add new test kits or devices in time, so this is likely close to our final list Tell us about other online or app tests we can check out! 🧵 1/3

A colorful spreadsheet list of full research devices and tests and how Renegade Research plans to use them during their August 2026 Innovation Inn.

Tests include: RNA seq (Amatica) + biobanking for later proteomics & Alden analysis blood test, Cytokines (ELISA) blood test, Acetylcholine (ELISA) blood test, Mitochondrial testing (ME Screen) for 1 person blood test, Ketones (Keto Mojo) saliva test, Cortisol (Eli) urine test, Ketones (strips) urine test, general urinalysis (Urinox) urine test, Minerals and Vitamin C (Vivoo) wearable test, EEG (WAVi and Muse) wearable test,
Oura and Garmin and Apple watch etc. wearable tests, Continuos 02 (Wellue ring) wearable test, Blood flow to brain (Lumia) with stand tests wearable tests, Glucose (Stelo CGM) wearable test, Autonomic function (Vagis ring, Reflex band, Polar H10) with stand tests wearable test, Muscle oxygen (Moxy rental) device test, Forehead Thermometer device test, Flir IR camera device test, CPAP to capture any UARS and apneas device test, EKG (Kardia) device test, Hand grip (dynamometer) device test, Blood pressure cuff device test, Metabolilsm (Lumen) device test, Ketones (breath) device test, SpO2 Oximeter device test, Capilleroscopy device test, Lactate (finger prick) device test, Capnography (ETCO2) device test, Eye tracking (Right Eye) device test, Gait analysis app test, Balance testing (2/Single leg, eyes open/shut) online and app test, Pupilometry (Reflex) online and app test, PEM questionnaires online and app test, Symptom tracking (Bearable) online and app test, Remote cognitive testing (Braincheck) online and app test, Cognitive (Lumosity games) online and app test

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Reposted by Elly Brosius, MS

Renegade Research @renegaderesearch.bsky.social · 01/08/2026

We have exciting news! Two members of @immunofever.bsky.social's research group will join us at Innovation Inn next week to demo testing they use in their MAESTRO project: RightEye eye tracking, WAVi EEG, Nailfold capillaroscopy, @wearlumia.bsky.social blood flow to the brain Thanks to Mikki 🙏

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Elly Brosius, MS @ellybrosius.bsky.social · 31/07/2026

This is Today in about 20 minutes! Several added panelists include neurologists and POTS docs and infection disease specialists. Join us

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Reposted by Elly Brosius, MS

#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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Reposted by Elly Brosius, MS

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

Please join us Sat. July 25 at 12 pm ET US for a Community Meeting: "Clinicians with Patients: Clinical Management Focus on Crashes and PEM, PESE & PENE" with Drs @doc4care.bsky.social & Brayden Yellman discussing care issues for #MECFS & #LongCovid Register: us06web.zoom.us/webinar/regi...

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Reposted by Elly Brosius, MS

Renegade Research @renegaderesearch.bsky.social · 20/07/2026

8/ Hear more about the current observational Truvaga project and plans for SIGNAL during the @renegaderesearch.bsky.social Research Roundtable on August 21st. Register here: us06web.zoom.us/webinar/regi...

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Reposted by Elly Brosius, MS

Renegade Research @renegaderesearch.bsky.social · 20/07/2026

3/ How it works: 1️⃣ Patients diagnosed with ME/CFS or Long COVID borrow devices, shipped free, for 3 months. 2️⃣ While borrowing, they contribute data through the Brain Inflammation Collaborative / @solveme.bsky.social unhide® Solve Together platform. Every loan = a real-world research opportunity.

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Reposted by Elly Brosius, MS

Renegade Research @renegaderesearch.bsky.social · 20/07/2026

2/ SIGNAL tackles 3 things our community needs: 1️⃣ Real-world evidence - determine which devices actually help 2️⃣ Access - "try before you buy" 3️⃣ Speed - findings shared with patients fast, not buried in papers years later

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Reposted by Elly Brosius, MS

Renegade Research @renegaderesearch.bsky.social · 20/07/2026

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 🧵

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Reposted by Elly Brosius, MS

Renegade Research @renegaderesearch.bsky.social · 18/07/2026

We have a long list of #MECFS #pwME #LongCovid projects we would like to tackle! Please donate to our Innovation Inn project, where 5 patient-researchers from RR will gather to induce post-exertional malaise (PEM) and measure results before, during and after PEM: www.zeffy.com/en-US/donati... 3/3

zeffy.com

Innovation Inn - Quantifying PEM

Five patient-researchers from our team will be coming together to induce Post Exertional Malaise (PEM) and track and measure as much as we can before, during,…

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Reposted by Elly Brosius, MS

Renegade Research @renegaderesearch.bsky.social · 18/07/2026

We received another $10K from a private donor for our Innovation Inn! Due to popular request, we will use these funds with @amaticahealth.bsky.social! 🎉 They're giving us a deal on testing and will also biobank for us, and Amatica will also biobank 20 additional samples for later proteomics 1/3

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Reposted by Elly Brosius, MS

Renegade Research @renegaderesearch.bsky.social · 19/07/2026

Please join us on Friday, July 31, 2026 at 12 pm ET US for a Clinician’s Roundtable webinar: “Part 2: Sleep Disorders and Breathing Mechanics” with Avram Gold, MD and Joe Borelli, MD on sleep and breathing issues in #MCFS and #LongCovid patients Register: us06web.zoom.us/webinar/regi... 🧵 1/7

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Reposted by Elly Brosius, MS

Secret Agent Number Six @designationsix.bsky.social · 01/07/2026

If the Bible is going to be taught in school then science needs to be taught in church.

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Reposted by Elly Brosius, MS

#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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Reposted by Elly Brosius, MS

Mike Hoerger, PhD, MSCR, MBA @michael-hoerger.bsky.social · 01/07/2026

Reminder: BlueSky is unethical in its own unique ways, including implementing mandatory ID Tracking in specific US locations. For public health updates the next week, find me on the devil app, IG, Threads, LinkedIn, TikTok, MySpace, or tin cans. 🙏

Requirement for DL, credit card, or social linked to other information.

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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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Reposted by Elly Brosius, MS

#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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Reposted by Elly Brosius, MS

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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Sonya Henar | Open for Comms and Looking for Work! @sonybaloneyart.bsky.social · 13/06/2026

my twitter feed is just wholesome interaction between first European world cup tourist interacting with american food/ stuff we do and OH MY GOD IT'S SO GOOD

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Durham County Department of Public Health (DCoDPH) @durhamhealthnc.bsky.social · 12/06/2026

Everyone is at risk from the dangers of high temperatures, but some groups are more vulnerable than most. Take extra precautions to protect yourself if you are in a higher-risk group, and be sure to check in on vulnerable neighbors and loved ones!

Heat Impacts on Vulnerable Populations. Pregnant: Extreme heat events have been associated with adverse birth outcomes such as low birth weight, preterm birth, infant mortality, and congenital cataracts. Newborns: Newborns are extra sensitive to heat because their ability to regulate body temperature is limited. Children: Young children and infants are particularly vulnerable to heat, as their bodies are less able to adapt to heat than adults. Those under four are especially vulnerable. Elderly: Older adults, especially those who have preexisting diseases, take certain medications, live alone or have limited mobility are at higher risk for heat illness. Chronic Illness: People with chronic medical conditions are more likely to have a serious health problem during a heat wave.

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Reposted by Elly Brosius, MS

Wonder of Science @wonderofscience.bsky.social · 30/05/2026

Fascinating footage of a human white blood cell chasing a bacterium captured through a microscope. 📽️: David Rogers

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Reposted by Elly Brosius, MS

Durham County Department of Public Health (DCoDPH) @durhamhealthnc.bsky.social · 27/05/2026

North Carolina is one of 18 states affected by a salmonella outbreak linked to Mogo brand moringa capsules. If you have any of these recalled capsules in your home, throw them out or return them to where you bought them. Learn more: www.cdc.gov/salmonella/o...

food safety alert. salmonella outbreaks linked to moringa capsules and powder. do not eat recalled moringa leaf capsules or powder products. throw them away or return them to where you bought them. CDC.gov/Foodborne-Outbreaks

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Reposted by Elly Brosius, MS

Point Defiance Zoo & Aquarium @ptdefiancezoo.bsky.social · 28/05/2026

Clara the rescued sea otter is showing off her lightning-fast tippy-tappies! 🦦 Those speedy paws aren’t just adorable, they’re a natural skill sea otters use to crack open hard-shelled snacks like clams and crabs using rocks as tools. Smart, speedy, and seriously cute. Happy #WorldOtterDay ❤️

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Billy Hanlon @bhanlon15.bsky.social · 21/05/2026

John Hopkins University: 'Recruiting healthy controls and patients for long COVID study' 'I'm a PhD candidate in the Biomedical Engineering PhD Program conducting a long COVID research study in Vikram Chib's lab at the Kennedy Krieger Institute.' hub.jhu.edu/announcement...

hub.jhu.edu

Recruiting healthy controls and patients for long COVID study

We are currently recruiting participants for a study investigating how physical fatigue affects effort assessment and decision-making. You will perform a series of hand-gripping tasks and make simple ...

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Reposted by Elly Brosius, MS

Jan Rosenow @janrosenow.bsky.social · 19/05/2026

The world’s largest sand battery got through Finland’s harshest winter in years. 2,000 tonnes of sand, heated to 500-600°C by cheap power, feeding district heating in Pornainen. And it worked. Result from one install: oil down 100%, emissions down 70%. Industrial process heat is the real prize.

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Reposted by Elly Brosius, MS

JustAnne @smartpatient.bsky.social · 13/05/2026

You put this into words so well. Celebrating the small wins really does add up over time.

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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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Reposted by Elly Brosius, MS

Renegade Research @renegaderesearch.bsky.social · 06/05/2026

We're are considering this meds, symptoms, other stuff tracking app in some upcoming research projects!

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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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Reposted by Elly Brosius, MS

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

Post-viral syndrome (or post-viral illness): New or long-term symptoms after an initial sickness. Multiple viruses can cause post-viral illness, and symptoms can significantly interfere with your daily life, so take steps to avoid illness to protect your long-term health!

Have you heard of Post-viral syndrome (or post-viral illness). Here’s a very very short explanation. It won’t cover everything, because this is social media.

What is post-viral illness? Sometimes, when you get sick with a virus...

After you “recover” from your initial illness (this period of illness is also called acute infection)...

It can trigger new or long-term symptoms, like extreme fatigue, trouble breathing, trouble thinking and remembering things, and more. This new/ongoing illness is the post-viral illness. Post-viral illness symptoms can last months or years and are sometimes worse than the initial illness, and they may leave you unable to work or care for yourself

Post-viral illness can be caused by multiple viruses, but most commonly: SARS-CoV-2 (COVID-19)
Epstein-Barr virus
Flu
Pneumonia
Some human herpesvirus types Although some people are at higher risk than others (depending, in part, on what the virus is), anyone of any age can develop a post-viral illness!

How can you stay safe from post-viral illness? The only guaranteed way to avoid post-viral illness is to avoid getting a virus. Depending on the virus, methods to protect yourself might include:

Getting vaccinated
Wearing masks
Keeping clean air
Washing your hands
Avoiding direct or indirect contact with people who are sick
And more. And if you do get sick, let your doctor know if you have long-lasting or new symptoms after your initial illness!

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Durham County Department of Public Health (DCoDPH) @durhamhealthnc.bsky.social · 01/05/2026

ER visits for tick bites are at the highest level for this time of year in nearly a decade, so take steps to prevent tick bites & protect yourself from serious illnesses! Wear long, protective clothing and apply an EPA-registered insect repellent! More: www.cdc.gov/ticks/preven... (1/2)

Protect yourself from diseases from tick bites this summer!

Tick bites can cause serious illnesses like: Lyme disease (a bacterial infection that can lead to chronic complications)

Alpha-gal syndrome (a dangerous allergy to meat and dairy products)

Rocky Mountain spotted fever (a bacterial disease that can be deadly if not treated early)

Wear EPA-registered insect repellent Look for a repellent that contains one of the following active ingredients:
DEET
Picaridin
IR3535
Oil of lemon eucalyptus (OLE)
Para-menthane-diol (PMD)
2-undecanone
Reapply as directed. If you are also wearing sunscreen (as you should!), apply sunscreen first, then insect repellent on top

Dress appropriately . Wear long sleeves and pants

Tuck pants into socks and shoes

Wear shoes that completely cover your feet; avoid open shoes and sandals

Treat clothes with products containing 0.5% permethrin, or buy permethrin-treated clothes and gear. Check your clothes and gear for ticks when you return indoors!
Remove any ticks immediately.

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

Our #BlueSunday fundraiser for ME! Tea party in a box kits - $30. Includes tea, treats, and some fun surprises! There is a no dairy/gluten option, and an outside of NC option. Order by 5/8. Order form & donation info: tinyurl.com/34766xpd #mecfs 3/3

tinyurl.com

You're Invited: Blue Sunday Tea Party in a Box & Virtual Event

Sunday May 17th, 2026 1:00 p.m. - 2:00 p.m. EDT Order now. Boxes mailed on May 12th. Join online on Sunday, May 17th. Deadline to order: Friday, May 8th. Blue Sunday is an annual international t...

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