N🤗VA ME-CFS/POTS/LC/FMS etc Support Group

For pw/caring4 long haulers: ME/CFS/FMS; Orthostatic Intolerance, POTS; Long Covid; Chronic Lyme. VDR immunopathy. MTHFR+. MCAS. By @NovaSupport Elly Brosius.

[N🤗VA ME-CFS/POTS/LC/FMS etc Support Group @CFSnova]

@RenegadeRes @OpenMedF You had a very good X Space on this topic. Glad the conversation continues.

[Renegade Research @RenegadeRes]

Register at this link for

Crashes & Post-Exertional Symptom Worsening (PEM/PESE/PENE)

July 15, 2026 | Wed | 5 pm EDT US | 2 pm PDT US

https://t.co/bUWFGGPD4T

[Hopkins ME/CFS & Related Disorder Program @HopkinsMECFSC]

Could 17 minutes change a life?
Orthostatic intolerance is one of the most common—and treatable—contributors to fatigue, brain fog, and post-exertional symptom worsening in people with #MECFS and #LongCOVID, yet it is often overlooked.
A simple 10-minute passive standing test, paired with careful listening, can uncover important diagnoses such as #POTS and help guide treatment.
We're proud to have contributed to this latest CLOSLER clinical pearl highlighting why every clinician should think beyond "fatigue."
Read more: Chronic fatigue—17 minutes can change a life
#MedEd #Dysautonomia #OrthostaticIntolerance #ClinicalExcellence

[#MEActionNC @MEActionNC]

#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:
https://t.co/hdCiszIHAZ

[Renegade Research @RenegadeRes]

We have 9 applications already, 25 days before the deadline!

It's already looking like we will have to do this more than once.

We want everyone to be able to participate, so if anything is holding you back from applying, please let us know. For example, if you wouldn't be able to speak during the meeting, you could write your story and we could read it. If you aren't able to write to fill out the application, we could meet with you to help. Also, caregivers are welcome to apply and present.

DM us if you need help or have any questions.

[N🤗VA ME-CFS/POTS/LC/FMS etc Support Group @CFSnova]

Calling all ME/CFS / Long Covid patients with research ideas. Apply to get them heard by researchers at this August 14 event.

[Renegade Research @RenegadeRes]

What if researchers could hear directly from the patients they study?

We are hosting a Research Roundtable on August 14 that will bring together patients with complex, multi-system, chronic conditions with researchers for exactly that.

#MECFS #LongCOVID #hEDS

[N🤗VA ME-CFS/POTS/LC/FMS etc Support Group @CFSnova]

@MEActionNC @PlzSolveCFS @MEActNet Such a caring and fun event! Thanks for creating and hosting it.

[#MEActionNC @MEActionNC]

💙Thank you, Blue Sunday supporters!
After expenses, our Blue Sunday Tea Party for ME raised $1,658 for @PlzSolveCFS & @MEActNet. With matching funds, the impact is over $2,619!
Thanks to all who donated, attended, & shared our event. ☕💙
#BlueSunday2026 #MillionsMissing #MECFS

[#MEActionMaryland @MEActMaryland]

#MEActionMaryland presents Dr. Peter Rowe (Johns Hopkins) on Neuroanatomical Considerations in Pediatric #MECFS, how conditions like Chiari malformation, craniocervical instability & others appear in young people with ME; includes a lived experience panel https://t.co/60xkmkKGrZ

[Long Covid Advocacy 💙 @LongCovidAdvoc]

Medical language shapes perception. It's why PCOS has just been renamed to PMOS - to represent its systemic impact.

The same with ME. It isn't fatigue & it's multisystemic.

It matters b/c chronic fatigue is in many illnesses but none have PEM which makes exertion dangerous.

[Alba Azola, MD @AzolaAlba]

Five years ago, she got COVID.
By November 2021, she came to our clinic with disabling #LongCOVID symptoms.

Today, for the first time in years, she told me she feels closer to her pre-COVID baseline. Closer to herself again. 🧵

[N🤗VA ME-CFS/POTS/LC/FMS etc Support Group @CFSnova]

Today!

[#MEAction Network @MEActNet]

Blue Sunday ,The Tea Party for M.E., is tomorrow - May 17, 2026! Everyone is invited!
A huge thank you to Anna Redshaw for creating this event.

More info: https://t.co/YAXSvzfbSJ

@meactionNC invites everyone at 1 pm. https://t.co/kbdAyFuVEs

#BlueSunday202 #TeaPartyForME2026

[Mike Hoerger, PhD MSCR MBA @michael_hoerger]

The Swiss Re Institute suggests COVID will kill about 150,000 Americans this year (excess deaths), so it's more like a bad cancer than a bad flu.

I would suggest talking to scientists who do Covid research and continue to take it seriously. My wife and I lead separate PhD programs. We homeschool so that our children do not experience the brain damage and other health problems from reinfections, which continue to pose a serious burden in 2026. It remains the most common chronic health condition in kids.

A key reason why it might appear "milder" is that about 2 million Americans have died from COVlD (excess deaths). Wipe out 2 million people most vulnerable to any health problem, it will almost always appear acutely milder.

[#MEAction Network @MEActNet]

We are at HHS today for #MillionsMissing to educate about what's at stake for disabled people under #Medicaid Work Requirements.

HHS is expected to finalize its guidance to states on "medically frail" exemptions by June 1st.

https://t.co/wey0nr1u19

#FrailAndFurious #pwME

[#MEAction Network @MEActNet]

We showed up in front the U.S. Department of Health and Human Services today, joined by Dr. Stephanie Haridopolos, Principal Deputy Assistant Secretary for Health - Policy and Chief of Staff/Senior Advisor to Office of the Surgeon General.

#MillionsMissing #FrailAndFurious

[#MEActionNC @MEActionNC]

This May 12, I ask all North Carolinians to join me in recognizing ME Awareness Day. May we take this opportunity to educate ourselves and offer support to the families in our community who will benefit from greater awareness of ME. -@NC_Governor

[#MEActionNC @MEActionNC]

I commend @MEActionNC for its dedication to improving care and quality of life of those affected by ME through patient services, education, & research. I want to also recognize the medical researchers working to identify the causes of and modes of treatment for this condition.

[#MEActionNC @MEActionNC]

From @NC_Governor
I ... acknowledge May 12 as ME Awareness Day. This day is dedicated to spreading awareness and knowledge about myalgic encephalomyelitis (ME), a complex and disabling illness that impacts the central nervous system, immune system, and other body systems.

[#MEActionNC @MEActionNC]

ME affects up to 9 million Americans, including approximately 288,000 North Carolinians, and is characterized by symptoms such as post-exertional malaise, debilitating fatigue, cognitive dysfunction, and immune and autonomic nervous system dysregulation.

[#MEActionNC @MEActionNC]

A letter of support from @NC_Governor @JoshStein_ .