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Brain Inflammation Collaborative Profile picture
@BrainInflCollab
Aug 10, 2025 • 3 tweets • 2 min read • Read on X
67% of 2,314 Long COVID patients surveyed reported symptoms of a dysregulated autonomic nervous system such as:
- A drop in blood pressure when standing
- Brain fog or cognitive disturbances
- Dizziness or light-headedness
- Heartbeat irregularities
- Gastrointestinal issues
- Tingling or numbness
- Bladder dysfunction
- Shortness of breath
- Sleep disturbances
- Chest pain
- Fatigue

This translates to 38 million Americans with Long COVID dysautonomia.

But there is a problem...🧵
"There are only 52 doctors in the US who are board-certified in autonomic disorders and fewer than 50 dysautonomia specialty centers throughout the US equipped to diagnose, treat, and study dysautonomia."

Furthermore, there are also no effective treatments for dysautonomia.

Read more here:
buff.ly/ebK7y0D
Existing medical centers are overwhelmed, forcing clinicians to "[turn] away new and even existing dysautonomia patients."

This is a heartfelt appeal to all the bright, dedicated medical students still exploring their specialty options: the Long COVID community urgently needs your skills, compassion, and innovation to address this growing crisis!

Please help us spread the word by sharing this content!

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More from @BrainInflCollab

Brain Inflammation Collaborative Profile picture
Dec 13, 2025
The SARS-CoV-2 spike protein localizes in an unusual place outside the brain.

This localization pattern might explain the neuroinflammatory symptoms experienced during:
- SARS-CoV-2 infection
- Long COVID...🧵
Researchers from Ludwig-Maximilians-University Munich, Munich, Germany found that the SARS-CoV-2 spike protein localizes to the skull's bone marrow.

To understand why this discovery is important in the context of Long COVID we must first learn about the following:
- the meninges
- immune cells in the meninges

Read the scientific publication here: cell.com/cell-host-micr…Image
\ Background - Skull Meninges Connections (SMCs):
The brain is wrapped in a 3-layer membrane called the meninges.

This protective membrane contains resident immune cells that do not come from the circulation.

Instead, they traffic through specialized channels from the skull's bone marrow (to the meninges) (1).Image
Read 11 tweets
Brain Inflammation Collaborative Profile picture
Nov 19, 2025
LIVE from #LongCovid International Conference Boston

New DNA variants enriched in pediatric Long COVID cohorts according to work from Dr. Sindhu Mohandas (USC/Children’s Hospital Los Angeles) and her team...🧵

#LongCovidkids
There were several individual gene variants enriched in a pediatric long COVID cohort.

Let's discuss the two highlighted by Dr. Mohandas in her talk...
The first was POLG (Polymerase gamma). This gene is critical for mitochondrial DNA replication and repair.

Variants in this gene that reduce POLG function might lead to the accumulation of mitochondrial DNA mutations.

Let's discuss some background first.
Read 8 tweets
Brain Inflammation Collaborative Profile picture
Nov 19, 2025
LIVE from #LongCovid Conference in Boston – mind-blowing data on viral persistence and immune dysregulation.

Key points from ongoing research from Timothy Henrick, MD, and his team at UCSF:🧵

#LongCOVIDIntl
Gut biopsies from LC participants find:
- viral persistence (detecting vRNA) found in 20-25% of samples
- Up to 992 days following the first infection

No viral RNA was detected in fully recovered controls.
The dsRNA & ssRNA were detected in the lamina propria (gut immune layer)

Downregulated immune genes:
- antigen presentation &
- immune cell trafficking

Yet… most patients have NO gut symptoms despite active viral persistence
Read 6 tweets
Brain Inflammation Collaborative Profile picture
Nov 14, 2025
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is characterized by:
- Post-exertional malaise
- Unrefreshing sleep
- Brain fog

A new study found that 71% of ME/CFS patients have a condition, which may help explain these core symptoms...🧵 ID: Image of lungs shown in white sitting inside of a black translucent chest cavity
Scientists recruited:
- 57 patients diagnosed with chronic fatigue syndrome
- 25 control participants

The ages and activity levels of the controls matched the chronic fatigue cohort.

71% of the chronic fatigue cohort displayed disordered breathing, unnoticed by those with ME/CFS.

Read more here: buff.ly/PROrAdM
The disordered breathing was characterized by:
- dysfunctional breathing
- hyperventilation or
- both

This was displayed as:
- deep sighing
- loss of synchrony
- chest breathing without the diaphragm

This type of atypical breathing can cause:
- shortness of breath
- difficulty focusing
- dizziness
- fatigue
Read 5 tweets
Brain Inflammation Collaborative Profile picture
Oct 5, 2025
Two consistent hallmarks of ME/CFS are:
- Post-exertional malaise (PEM)
- Chronic fatigue

A new study finds more hints at the drivers of these symptoms...🧵 ID: Decorative image of a brain pictured in bright colors like from a radioactive tracer showing brain regions with highest metabolic activity presented on a black background.
Researchers from Ian Lipkin's Lab at Columbia University (and others) recruited:
- 56 patients with ME/CFS and
- 52 healthy controls.

Next, they measured the following before and 24 h after exercise:
- Lipids
- Cytokines
- Metabolites
- Plasma proteins

Here is what they found.

Full Study: nature.com/articles/s4432…Image
Immune cells were isolated from the blood and stimulated to respond as if a pathogen were present.

One of these infection-mimicking molecules was a bacterial toxin, Staph aureus enterotoxin B (SEB).

The ME/CFS white blood cells made significantly more pro-inflammatory cytokines (independent of exercise) in response to SEB (below).Image
Read 10 tweets
Brain Inflammation Collaborative Profile picture
Oct 3, 2025
A recent paper revealed the shocking prevalence of neuropsychiatric conditions in patients with mast cell activation syndrome (MCAS)

This includes but is not limited to:
- Panic disorder
- Neuropathy
- Depression
- Brain fog
- Tinnitus
- Anxiety
- PTSD
- etc.

Here are the numbers...🧵ID: Decorative image of a brain made out of Play-Doh with six different bright colors highlighting different regions of the brain.
Dr. Leonard Weinstock, in collaboration with a group of other prominent researchers, used questionnaires from:
- 553 MCAS patients
- 558 control subjects

The surveys were used to determine the prevalence of:
- 19 neurologic and
- 14 psychiatric disorders

While the link between neuropsychiatric conditions and MCAS isn't surprising, the magnitude of the reported association was...

Read more:
buff.ly/Nl0U8ZXID: Screenshot of the paper being discussed
They found that females with MCAS had ⬆️ odds of (*=significant change):
Migraines or severe headaches: 4.6-fold increased odds*
Insomnia (severe and chronic): 3.8-fold increased odds*
Non-epileptic seizure activity: 14.3-fold increased odds*
Restless legs syndrome: 3.4-fold increased odds*
Cognitive dysfunction: 22.5-fold increased odds*
Sound hypersensitivity: 5.9-fold increased odds*
Odor hypersensitivity: 12.8-fold increased odds*
Light hypersensitivity: 11.5-fold increased odds*
Fainting or near faint: 10.0-fold increased odds*
Pain hypersensitivity: 6.2-fold increased odds*
Muscle weakness: 8.4-fold increased odds*
Chronic fatigue: 21.3-fold increased odds*
Acoustic startle: 4.5-fold increased odds*
Tremors at rest: 8.9-fold increased odds*
Sleep attacks: 9.0-fold increased odds*
Neuropathy: 11.1-fold increased odds*
Myalgia: 12.2-fold increased odds*
Tinnitus: 6.4-fold increased odds*
Read 12 tweets

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