For pw/caring4 long haulers: ME/CFS/FMS; Orthostatic Intolerance, POTS; Long Covid; Chronic Lyme. VDR immunopathy. MTHFR+. MCAS. By @NovaSupport Elly Brosius.
Northern Virginia, VA
Joined July 2013
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N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
🍁 Happy Fall & Halloween 🎃 Y’all!
@MEActNet NC State Chapter Support Group is upon us. Wed, OCT 21, 12:30 pm ET US. Join us now for open, paced conversation on highs &lows of living with or with someone with ME/CFS or Long Covid. Next post in 🧵has link to join info.
N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
Still time to do this today. EVERY comment makes an impact. @PlzSolveCFS has made it as cut and paste as possible.
Took me under 5 minutes and I got a good feeling from being counted, helping others be counted in the future.
⏰ Just one day left! The CDC's proposed 2028 survey could leave millions of people with ME/CFS and Long Covid uncounted. Solve is speaking up. You can, too. Submit your comments by October 19!
Check out the link below for details:
solvecfs.org/cdc-me-cfs-long…
#MECFS #CDC
ALT Urgent call to keep ME/CFS and Long Covid included in CDC's 2028 health survey, with a public comment deadline of October 19.
N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
Join the 10th Annual Rowe’s Research Runners Walk, Run & Roll.
Funds raised support the work we do at our clinic to improve care and advance research for people living with #LongCOVID, #MECFS, dysautonomia, and related post-infectious illnesses.
rowesresearchrunners.org
N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
We’re Moving for Answers! 🏃♀️🚶♂️♿💙
Join our team—or cheer us on with a donation—to support Johns Hopkins research & care for #LongCOVID, #MECFS, dysautonomia & beyond.
Every step (and every dollar!) moves us closer to answers. 🔬💙
runsignup.com/Race/Register/…
Urgent Armchair/from your couch advocacy alert. 🚨🛋️
4/ Add your comment in ~2 minutes by Sept 18:
→Go to niaid.nih.gov/about/niaid-or…
→ Scroll down, click “Leave a comment,”
→Submit.
For suggested wording + Solve’s full comment:
ow.ly/v0no50ZO5Ve
N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
1/ 🚨Take action by Friday!
NIAID has proposed eliminating its Division of Clinical Research — the infrastructure behind its clinical trials — on a public comment window of just five days. #MECFS #LongCOVID
ALT Solve M.E. action alert on a deep teal background. Headline: Take action by Friday. Text: NIAID has proposed eliminating its Division of Clinical Research, the infrastructure behind clinical trials, on a five-day comment window. Comment by Sept 18.
In about 1.5 hours at 12:30 PM Eastern today: Support and info sharing by zoom about life with ME/CFS, Long Covid.
Members of our Virginia groups are invited. It is very neighborly.
🍁 Happy Fall Y’all!
September ME/CFS, LC @MEActNet NC Support Group
Wednesday, the 17th, 12:30 pm ET US.
Join us for an open, paced conversation the highs, lows, and in-betweens of living with or with someone with ME/CFS or Long Covid.
Next post in 🧵has link to join info.
N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
🍁 Happy Fall Y’all!
September ME/CFS, LC @MEActNet NC Support Group
Wednesday, the 17th, 12:30 pm ET US.
Join us for an open, paced conversation the highs, lows, and in-betweens of living with or with someone with ME/CFS or Long Covid.
Next post in 🧵has link to join info.
Friday.
Even if you aren't up for listening much or will be working on your pill trays or something, showing up by phone gets noticed. Registering gets noticed.
The CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call is on Sept. 18th at 3:00 pm ET. Register: ow.ly/jMYn50ZLwsJ
Guest speaker: Nancy Klimas, MD. Also featuring program updates from CDC's ME/CFS program staff and a Q&A.
#pwME #MECFS #CDC
ALT Announcement for CDC ME/CFS SEC Call on September 18, 2026, from 3 to 4:30 pm ET with registration required. Photo at bottom shows a person on their couch attending an online meeting with a laptop. Blue background with orange accents. Text: CDC ME/CFS SEC Call Featuring a presentation Dr. Nancy Klimas, Director of the Institute for Neuro-Immune Medicine at Nova Southeastern University. Also featuring program updates from CDC's ME/CFS program staff and a Q&A.
Excellent info about different types of devices some of which have really helping folks. Also info about a new device lending library for try before u buy.
You can watch/listen to our Aug. 21 Research Roundtable "Vagus Nerve Stimulation Informal Tracking Project for ME/CFS & Long Covid Research" on our YouTube channel here: youtube.com/watch?v=_ku1beUO…
Thanks to our wonderful panelists and attendees for insightful and detailed questions, experiences and information!
#LongCovid #MECFS #pwME #VagusNerve
You can vote daily, and 3 times in each category. You can boost interest in ME/CFS, long Covid, and other cool topics.
Please vote for our preprint, which was shortlisted in this research competition for the "Popular preprint of the decade" award! 🥳
Vote here: preprints.org/activity/award…
We are so proud of our researchers and their preprint "A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long Covid"
N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
That instability in standing HR is something I noticed was especially predictive of daily function when I was doing regular first stand tests. To the point that if my HR didn’t roughly stabilize within a minute I’d just lay back down.
MECFS (left) vs non-MECFS (right). Obvious high resting HR in ME subject and a big HR drop (40bpm) at start of supine2. The classic deltaHR on stand is identical for both. Ensemble waveforms show same shape/timing in supine 1&2 for both subjects. @RenegadeRes
Monthly combined support group zoom soon:
Our Zoom/phone SUPPORT meeting is
🫂 WED August 19, 2026
( 3rd Wednesday, monthly)
🕧12:30 PM EDT US for #MECFS, #LongCovid
@meactnet NC State Chapter Support Group. Friends, allies, caregivers, and out-of-staters welcome.
meaction.net/event-details/m…
N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
It was extraordinary to be in a house with people
-knowing you and your story already,
- helping you stay on mission with words or by example,
- caring for you with food or space or observations you miss
- 🤔😂😱at absurd stuff we’ve endured
- being ok with weird stuff we do
N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
Special RENEGADE Roundtable is tomorrow. I almost applied to do it but knew I’d still be recovering from #InnovationInn. So I gave my pitch in unorganized, no pressure form to @doc4care while in Montreal. He seemed to get info to apply clinically. Maybe I will develop it.
Join us for a free virtual Research Roundtable this week, "Patients to Researchers: Lived Experience"
Friday, August 14 at 1 pm ET US
Patients with complex, multi-system chronic conditions will discuss their experiences and help researchers improve research projects and trials
Register using the link in the next post ⬇️
1/2 🧵
#MECFS #pwME #LongCOVID #MedicalResearch #PatientLedResearch
ALT A purple and blue graphic depicting bubbles with white text. In the upper righthand corner, the Renegade Research logo is depicted. Graphic reads: "Patients to Researchers: Lived Experience Research Roundtable" on Friday, August 14, 2026 at 1 pm ET US. Join us for a free virtual discussion where ME/CFS and Long Covid patients will share experiences to help researcher projects and trials. Register: tinyurl.com/renres-08-14-2026. A QR code with a link for the event is depicted in the lower lefthand corner. The Renegade Research website link, Renegade-Research.org, is depicted in the lower righthand corner.
TODAY at 1 pm! Rare event. Looking foward to it. Will be recorded.
This is going to be a great roundtable tomorrow.
Patient presenters include @scott_scientist @laraggaral @harlingmayss @woodnuttstacey @LucienDorman @liamsLCjourney @meurmeweallme talking about unique triggers, treatments that have worked for them, remission events, unique symptom profiles, etc.
There are over 30 researchers attending to listen to the patient stories, including @ngklimas @DrMaureenHanson @sunsopeningband @daniellevalcou2 @amyrochlin @bhupeshprusty @resiapretorius @dbkell @jeff_says_that @selinlab @michaelpelusomd and many more who aren't on X
N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
Had to try pose 4 times bc I don’t want to stand still when don’t have to! #OrthostaticIntolerance
Superman stance for @RenegadeRes #InnovationInn wearing muscle @MoxyMonitor
SOS bc the #millionsmissing need more help from mild to #severeME @MEActNet
#severeMEday #MECFS
N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
Tonight we light a candle in memory of those we have lost to #SevereME.
We mourn. We hold all who are mourning in love.
We come together as people with debilitating illness, caregivers, partners, allies, advocates, researchers, & clinicians.
#SevereMEday
ALT Single glowing candle flame with blurred warm lights in background, honoring those lost on Severe ME Day, August 8.