We are organizing a coordinated research effort to revolutionize the diagnosis and treatment of #neuroinflammation illnesses and #mentalhealth symptoms.
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Jun 10 • 7 tweets • 2 min read
After two SARS-CoV-2 infections, Heather Carr became largely bed-bound and nearly unable to string together a basic train of thought.
“I cry when I try to think, now,” she said. “My brain short-circuits.”
Census data suggests there are millions more just like her in the U.S...🧵
The Census Bureau's monthly Current Population Survey asks Americans if they have serious problems with their memory or concentration.
Respondents are classified as disabled if they answer yes.
Although there is no disability insurance (financial) incentive, the number answering "yes" has increased by 1.5 million since the pandemic (red line).
Jun 8 • 8 tweets • 3 min read
April Burrell lived in a psychiatric hospital for 20 years.
Her catatonic state left her immobile and unresponsive.
But after 2 decades, she suddenly woke up.
Here is why..🧵
At the age of 21, April, a high school valedictorian and accounting major at the University of Maryland Eastern Shore, suddenly developed a severe form of schizophrenia.
Her psychosis caused visual and auditory hallucinations.
Unable to take care of herself, she was admitted to a psychiatric hospital.
A new study on COVID-19’s cognitive impact shows:
- 3-point IQ drop for recovered mild cases
- 6-point IQ drop for Long COVID cases
- 9-point IQ drop for ICU patients
Reinfections may worsen the effect, adding a 2-point IQ hit...🧵
These cognitive deficits, linked to memory, reasoning, and executive function, persist for a year or more in some.
Although a 3-point drop is subtle, akin to mild fatigue, a 6-point loss could make complex tasks noticeably harder.
An Epstein-Barr Virus (EBV) infection increases your susceptibility to developing multiple sclerosis (MS), among other chronic conditions such as:
- Celiac disease
- Long COVID
- Sjogren's
- ME/CFS
- Lupus
- POTS
A new study might have discovered why (at least for MS)...🧵
A group of Italian researchers discovered that a single copy of the HLA-E*01:01 gene, in addition to a documented history of mono, increases your odds of developing MS by 74%.
The HLA-E*01:01 gene alone did not increase the risk of MS.
This was determined from analyzing 487,114 individuals from the UK BioBank cohort.
Neuroinflammation can lead to repetitive movements similar to those observed in:
- Obsessive Compulsive Disorder (OCD)
- Autism Spectrum Disorder (ASD)
New evidence suggests it might be (partly) fixable with FDA-approved drugs...🧵
South Korean researchers found that two FDA-approved drugs can reverse these repetitive movements:
- Memantine - licensed for Alzherimers
- Interleukin-1RA (Anakinra) - licensed for rheumatoid arthritis
Data suggest there is a broken ion channel on the surface of white blood cells in patients with (1):
- Long COVID
- ME/CFS
New evidence suggests it can be fixed.
Here is how...🧵
Research from Dr. Sonya Marshall-Gradisnik in Brisbane, Australia, verified that Long COVID patients, like ME/CFS patients, have a dysfunctional calcium ion channel called TRPM3(1).
The function of this ion channel can be restored with low-dose naltrexone (LDN) in ME/CFS-isolated immune cells (1).
New evidence suggests the same for Long COVID patients (a provisional publication shown in the image).
May 10 • 7 tweets • 2 min read
Want to ensure that NIH grant funding prioritizes medical research for Long COVID?
Here is how you can help...🧵
But first, here is the issue.
HHS budget cuts have been recently proposed.
This is important because the HHS budget funds the:
- NIH
- CDC
These cuts likely wouldn't be minor.
A proposed $40 billion HHS cut was made by the current administration, which could slash the NIH budget from $47 billion to $27 billion.
Infection-associated chronic conditions and illnesses (IACCIs) affect tens of millions of U.S. citizens (1).
This includes (but is not limited to):
- Chronic Lyme
- Long COVID
- ME/CFS
- MCAS
- POTS
- PANS
Yet there are no cures.
This is why science moves slowly and how to supercharge it...🧵
Obviously, many of these IACCIs have experienced decades of underfunding.
But let's set the lack of funding aside and look behind the "biomedical research curtain" so you, the patient, can understand how research works.
This will help you understand the research bottlenecks... and how to fix them.
Apr 29 • 10 tweets • 2 min read
🚨 BIG NEWS 🚨
We are supercharging clinical research on ME/CFS, Long COVID, and other infection-associated chronic conditions by teaming up with: 1. Solve M.E. 2. CareEvolution 3. Complex Disorders Alliance (formerly Metrodora Foundation) 4. ChronicleBio
Here is why this is a win-win for patients...🧵2/ Faster Diagnoses
By pooling decades of patient-reported data, we’re helping doctors better understand ME/CFS, Long COVID, and infection-associated chronic conditions, so patients get answers sooner.
Apr 26 • 9 tweets • 3 min read
Neuroinflammation is a hallmark of many conditions, including, but not limited to:
- Autoimmune Encephalitis
- Traumatic Brain Injury
- Long COVID
- ME/CFS
- MS
- etc.
This immune cell, at the base of the skull, was found to reduce neuroinflammation.
Here is how...🧵
Harvard scientists discovered that regulatory T cells (Tregs) sitting between the skull and brain (meninges) prevent inflammatory immune cells from entering the brain and making a proinflammatory molecule called interferon-gamma.
This protects against neuroinflammation and short-term memory loss.
A recent study "estimated that 5.8 million young people have Long COVID." (1)
Let's put these numbers into perspective...🧵
cbsnews.com/video/millions…
It would take about 71 average-sized professional football stadiums to seat 5.8 million children.
To get them there, you’d need 80,556 buses to transport them.
If you lined up each bus from end to end, it would stretch 610 miles, about the distance from Dallas to Denver (or from Munich to Paris for our European friends).
Apr 20 • 11 tweets • 4 min read
A new study just revealed how psychologically damaging it is to tell a patient that their symptoms are in their head.
Here is what they found...🧵
"More than 80% of [systemic autoimmune rheumatic disease] patients reported that having their symptoms dismissed as... psychological, along with comments like "it's in your head," harmed their self-worth. For 72%, the experience remained upsetting even decades later."
In 2017 Alina Sternberg, a psychiatrist, was hit with crushing fatigue and brain fog.
Neurologists told her the symptoms were caused by depression.
"No, I can enjoy my life and I know what depression is... I’m a psychiatrist!”
It took another long 6 years to discover the culprit...🧵
Alina's symptoms became progressively worse.
By 2023 she spent most of her days in bed.
Not only was she hit with soul-crushing fatigue but her memory deteriorated.
One day she forgot her way home, a place she had lived for 20 years.
Apr 10 • 11 tweets • 3 min read
One of the biggest discoveries in diagnosing brain inflammation was recently made, and nobody is talking about it.
Here's how it works and why it could be a game changer...🧵
\ The Discovery:
Researchers from the National Institute of Health used positron emission tomography (PET) imaging to measure the activity of an enzyme, COX-2, involved in inflammation.
COX-2 levels are acutly elevated in response to inflammation.
And COX-2 activity contributes to inflammation.
It's the same enzyme that ibuprofen inhibits.
Here's how it works.
Mar 31 • 4 tweets • 2 min read
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."
Inhaling this gas has been reported to:
- modulate the immune system
- mitigate oxidative stress
- reduce inflammation
It's been proposed as a COVID-19 treatment(1).
But could it also help those with Long COVID?
(hint: it's not oxygen).
High carbon dioxide (CO2) in your blood can be lethal.
But, low levels of CO2 in your blood is also harmful, causing (1):
- increased free radical production
- reduced cerebral blood flow
- worsened inflammation
Mar 20 • 7 tweets • 2 min read
If this were a healthy brain would light up evenly.
But the brains of Long COVID patients light up in patches...🧵
\ The Discovery:
Researchers from the Department of Nuclear Medicine at Université de Lorraine, in Nancy, France intravenously injected a radioactive tracer in those with Long COVID and healthy controls.
Traumatic brain injuries (TBIs) result in an immune response that can become dysregulated leading to neuroinflammation.
Could the first ever licensed treatment for TBI be a nasal spray? 🧵
Harvard scientists evaluated the efficacy of Foralumab in a mouse model of TBI.
This monoclonal antibody, which can bind CD3 and block T cell activation, is currently being tested in human clinical trials for treating MS and Alzheimer's.
Pro-inflammatory cytokines, like IL-1b, can cause the neurotoxic buildup of quinolinic acid (QUIN).
QUIN can cause cell death and neuroinflammation that triggers a never-ending loop of even more cell death and more neuroinflammation...🧵
But detecting QUIN in the brain is problematic due to inaccessibility and low concentrations.
That's why the QUIN precursor, kynurenic acid (KYNA), found in the blood is more routinely measured as a proxy for metabolic flux through this QUIN-producing biochemical pathway (the kynurenine pathway).
A surprising discovery finds a new mechanism that might explain the way beta-amyloid proteins accumulate in the Alzheimer's brain.
It could be the next big drug target for treating not only Alzheimer's but:
- Parkinson's
- Psoriasis
- Cancer
- Lupus
- etc.
🧵
\ The Discovery:
Researchers from the German Center for Neurodegenerative Diseases (DZNE) found that blocking the NLRP3 inflammasome enhanced the ability of immune cells in the brain (microglia) to phagocytose (eat) amyloid beta proteins.
This suggests that NLRP3 activation might contribute to amyloid beta plaque formation in Alzheimer's disease.
There is a multi-protein complex that plays a role in a vast number of diseases.
This includes, but is not limited to:
Amyotrophic lateral sclerosis (ALS)
Rheumatoid Arthritis
Sjögren’s
Alzheimer’s
Parkinson’s
Crohn's
Psoriasis
Epilepsy
Lupus
MS
Here is what it is and why there is a race to block it with a drug...🧵
\ Inflammasome:
The inflammasome is a multi-protein complex that (indirectly) activates the proinflammatory cytokines IL-1b and IL-18.
Many human diseases are characterized by high IL-1beta (IL-1b).
Significantly more than previously mentioned.
And blocking IL-1b can improve many disease outcomes.
But IL-1b and IL-18) are different than other pro-inflammatory cytokines...