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

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

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

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

Monthly Support meeting time soon.

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

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.

It's ME(Jaime)@exceedhergrasp1.bsky.social · 4w ago

Introduce yourself as what almost killed you. Hi, I'm an endocrine provocation test ✨

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

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.

Renegade Research@renegaderesearch.bsky.social · 4w 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 🧵

#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.

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

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.

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

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

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.

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😢

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

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 🙏

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

Renegade Research@renegaderesearch.bsky.social · 2mo ago

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

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 · 2mo 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 🧵

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...

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...

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.

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

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 🧵

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

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,…

zeffy.com

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

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

@openmedf.bsky.social & @renegaderesearch.bsky.social live session: July 15 at 5pm ET on crashes & PEM/PESE/PENE in ME/CFS. Focus includes defining crashes vs PEM, triggers, & how to measure post-exertional symptom worsening in trials. us02web.zoom.us/webinar/regi...

Welcome! You are invited to join a webinar: Crashes & Post-Exertional Symptom Worsening (PEM/PESE/PENE). After registering, you will receive a confirmation email about joining the webinar.

Open Medicine Foundation and Renegade Research are hosting a live session on July 15 at 5pm ET focused on crashes and post-exertional symptom worsening (PEM/PESE/PENE) in ME/CFS. The session will brin...

us02web.zoom.us

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

#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

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. 🙏