@CFSnova

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
groups.io/g/CFSupport
Joined July 2013
  • Tweets3K
  • Following1.3K
  • Followers534
54Media
N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
Alba Azola, MD@AzolaAlba
Sep 18
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

Home page | Rowe's Research Runners

Rowe's Research Runners is a volunteer-driven nonprofit raising funds and awareness to support research on ME/CFS, dysautonomia, and related chronic illnesses. Inspired by patient stories and Dr....

rowesresearchrunners.org
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N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
Alba Azola, MD@AzolaAlba
Sep 18
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/…
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Urgent Armchair/from your couch advocacy alert. 🚨🛋️
Solve ME/CFS Initiative@PlzSolveCFS
Sep 15
Replying to @PlzSolveCFS
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
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N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
Solve ME/CFS Initiative@PlzSolveCFS
Sep 15
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
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.

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.

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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.
#MEActionNC@MEActionNC
Sep 15
🍁 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.
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N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
#MEActionNC@MEActionNC
Sep 15
🍁 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.
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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.
#MEAction Network@MEActNet
Sep 9
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
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.

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.

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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.
Renegade Research
@RenegadeRes
Sep 4
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

Vagus Nerve Stimulation Informal Tracking Project for ME/CFS and Long...

Remote Device Research Project on vagus nerve stimulation with expe...

youtube.com
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You can vote daily, and 3 times in each category. You can boost interest in ME/CFS, long Covid, and other cool topics.
Renegade Research
@RenegadeRes
Sep 4
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"

Popular Preprints of the Decade Award 2016–2026 | Preprints.org

Celebrate 10 years of Preprints.org by voting for your favorite preprints from 2016–2026, across 11 disciplines.

preprints.org
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N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
elle carnitine 🍉@elle_carnitine
Aug 18
I understand where people come from when they say that pacing is not treatment, but in lots of diseases, many treatments just serve to slow disease progression. I think that’s exactly what pacing does, and thinking of it as treatment could help us get support for it
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N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
Katrin Boniface@KatBoniface
Aug 17
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.
Jason
@BrainstemMd
Aug 17
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
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Monthly combined support group zoom soon:
#MEActionNC@MEActionNC
Aug 19
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…

#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
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N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
elly brosius@NovaSupport
Aug 13
Replying to @IsabelRamirezRD
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
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N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
elly brosius@NovaSupport
Aug 13
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.
Renegade Research
@RenegadeRes
Aug 10
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
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.

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.

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TODAY at 1 pm! Rare event. Looking foward to it. Will be recorded.
Renegade Research
@RenegadeRes
Aug 13
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
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N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
elly brosius@NovaSupport
Aug 8
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
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N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
#MEAction Network@MEActNet
Aug 8
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
Single glowing candle flame with blurred warm lights in background, honoring those lost on Severe ME Day, August 8.

ALT Single glowing candle flame with blurred warm lights in background, honoring those lost on Severe ME Day, August 8.

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N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
Katrin Boniface@KatBoniface
Aug 9
This would be INCREDIBLE! My wife’s response to a photo update I sent (when I thought I was doing ok)
Your eyes are not remotely aligned

ALT Your eyes are not remotely aligned

Naomi Harvey “PhD Witch” #WearAMask@Naomi_D_Harvey
Aug 9
Replying to @TraceyABurgess
I saw! It’s a terrific example of a non invasive objective marker. If this can be done somehow with a phone using the front camera to track people’s eyes it could be very powerful for at home data collection.
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N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
Mike Hoerger, PhD MSCR MBA
@michael_hoerger
Aug 9
PMC COVlD Update, Week of Aug 10, 2026 (US) 🔹National levels rise to their highest in 130 days 🔹5 major regional outbreaks, 4 isolated hot spots 🔹1 in 156 people estimated actively infectious 🔹2 million estimated new weekly infections See Alt text for details. THREAD🧵1/10
The US has 5 regional COVlD outbreaks and 4 isolated outbreaks. The regional outbreaks include much of Alaska, California and western Nevada, much of Texas (central Texas sites have been shut off), the region from Kentucky through southern Illinois, and much of southern Florida. Isolated outbreaks include Franklin County in Washington, Bannock County in Idaho, Floyd County in Georgia, and Jasper County in South Carolina. Levels are rising across much of the US but later and slower than typical.

ALT The US has 5 regional COVlD outbreaks and 4 isolated outbreaks. The regional outbreaks include much of Alaska, California and western Nevada, much of Texas (central Texas sites have been shut off), the region from Kentucky through southern Illinois, and much of southern Florida. Isolated outbreaks include Franklin County in Washington, Bannock County in Idaho, Floyd County in Georgia, and Jasper County in South Carolina. Levels are rising across much of the US but later and slower than typical.

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