Just a note to fellow chronic illness friends & acquaintances across the board in twitterland
We may disagree, but I believe we’re all in this together
Sending extra hugs for anyone who needs it
This road can be brutal🫂
Stay strong, Love Elle x
L Ward retweeted
I've been asked to support a Long Covid patient @AutonomicBrad77 by sharing his GFM.
Seeing what the disease has done to people, often leaving them in real financial difficulty is really miserable to witness.
If you're able to help him, here's the link.
gofundme.com/f/support-for-e…
L Ward retweeted
In honor of POTS Awareness Day, I wanted to share a video that I genuinely wish more people would take the time to watch.
It’s one of the best videos I’ve come across explaining what POTS actually is and just how debilitating living with this condition can be.
L Ward retweeted
Sadly, another person with LongCOVID has passed away. I didn’t know Broden well but he was a really nice, kind person and I came across this post from August, which is absolutely tragic because he was really struggling.
My condolences and best wishes to those closest to him.
ALT Broden @Gavtaraysin Fighting for social justice and fairness for all. My interests are; #disability, and have been fighting #LongCovid since Dec '22. Broden 十 @Gavta... • 8/30/26 It takes a lot of self control not to be angry with the person who gave me covid, which turned to long covid. At the time I was skeptical of covid. But living as a semi recluse I thought I shouldn't gamble with my health so started take precautions. But I didn't calculate on my family being the biggest threat to my health.
L Ward retweeted
Cows on the loose in downtown KC! KCFD says a semi hauling more than 120 cows crashed around 3 am on I-70 near Admiral Blvd. on the downtown loop. Cows have made it miles away. KCFD has reports of loose cows near Crown Center and KCK! We'll have a live look at the scene on @kmbc.
L Ward retweeted
#purplefriday 🪻 #flowersonfriday
With life as short as half-taken breath, don’t plant anything but love.
- Rumi
#poetry #mysticpoetry
L Ward retweeted
Happens with folks with LongCOVID too!!!!
A person with HIV/AIDS had difficulty in swallowing food.
Doctor did an endoscopy and found out that the esophagus is infected with fungus.
The endoscopy video shows a clear difference between a healthy esophagus and one affected in a person with HIV. The normal lining is smooth and pink with soft folds that allow food to pass easily. In the HIV case the walls are covered with thick white patches that look rough and stuck to the surface. These patches make the tube look swollen and narrower.
Esophageal candidiasis is a yeast infection that grows in the food pipe when the immune system is weak. People with advanced HIV often develop it because their body cannot control the yeast that normally lives harmlessly in the mouth and gut. The white patches cause pain behind the chest and make swallowing difficult or painful. Some people also feel a burning sensation or notice food getting stuck.
Doctors treat the infection with antifungal tablets such as fluconazole that kill the yeast. Most people improve within a few days once treatment starts. Keeping HIV under control with medicines is the best way to stop the infection from returning. Strong immune function prevents the yeast from overgrowing and protects the esophagus.
L Ward retweeted
For those with Long Covid: do you think the stress of not being believed by doctors, family, or friends has made your condition worse?
L Ward retweeted
What long Covid marker tests are available somewhere like LabCorp & covered by insurance….
But go beyond regular CBC & cholesterol?
I’m meeting with a naturopath soon & researching what to ask for.
The list of biomarkers for Long COVID available now and possible new ones on the horizon.
⭐Long Covid is a distinct disease.
🧪Before HIV had a test it resembled MECFS. Alot of people died. Now it must be ruled out by the HIV test before MECFS can be diagnosed. The same should happen for LC. We are watching people around the world take their own lives because this isn't being done properly. We could easily have tests and treatments but the money is spent on studies that are not helpful. Patients need awareness.
⌛The Now List (Unique to LC)
👉 Circulating Spike & Viral RNA (Simoa & ddPCR): Ultra-sensitive Single-Molecule Array (Simoa) assays detect persistent full-length SC2 Spike, S1 subunit, and N proteins in plasma, frequently packaged inside extracellular vesicles. Digital droplet PCR (ddPCR) quantifies low-copy viral RNA fragments in biofluids.
👉 Intracellular Monocyte & Platelet Reservoirs: Mass-spectrometric and flow-cytometric identification of SC2 Spike protein persisting inside long-lived non-classical monocytes (CD14+ CD16+) and megakaryocyte-derived circulating platelets.
👉 Terminal Complement Cascade Hyperactivation (C5b\text{-}9 & C4d): Persistent, elevated levels of membrane attack complexes (C5b\text{-}9), C4d, and altered C7 cleavage products in resting blood. This confirms active, continuous complement-mediated endotheliitis (Cervia-Hasler et al., Science).
👉 Matrix Destruction & Endothelial Activation (MMP-9 & sVCAM-1): Elevated Matrix Metalloproteinase-9 (MMP-9) and an altered MMP-9/TIMP-1 ratio, alongside elevated soluble vascular cell adhesion molecule-1 (sVCAM-1) and VEGF, signaling active basement membrane breakdown and microvascular starvation.
👉 Resistant Amyloid Microclots: Fluorescence microscopy (Thioflavin-S) and viscoelastic testing (TEG) identifying hyper-dense, fibrinolytic-resistant microclots rich in Alpha-2 Antiplasmin and Platelet Factor 4 (PF4), enmeshed with Neutrophil Extracellular Traps (NETs).
👉 Endocrine & T-Cell Exhaustion Panels: Severely blunted morning salivary/serum cortisol paired with high expression of T-cell exhaustion markers (PD-1, TIM-3, TIGIT) on virus-specific CD8+ T cells.
🥾The Tests Being Explored
PolyBio (led by Dr. Amy Proal and the LC Research Consortium) operates on the principle that standard peripheral blood draws miss the central pathology. Their diagnostic pipeline focuses on identifying viral reservoirs, tissue remodeling, and neuro-immune activation directly inside tissue sanctuaries and specialized biofluids.
1. Tissue-Level & Spatial Biomarker Mapping
👉Spatial Metabolomic Mapping (MALDI Mass Spectrometry Imaging): Directly mapping hundreds of lipids and metabolites at single-cell resolution across gut tissue, bone marrow, and muscle biopsies. This technique aligns localized metabolic failure and oxidative stress directly with single- and double-stranded SC2 tissue RNA.
👉 Tissue Biopsy Reservoirs (Gut, Reproductive Tract, Vagus Nerve):
Spatial transcriptomics and digital pathology documenting persistent viral RNA/protein in gastrointestinal mucosa, female reproductive tissues, and vagus nerve tissue, accompanied by localized mast cell degranulation.
👉 MENSA & Plasmablast "Immune Snapshots": Measuring Memory B-cell and antibody-secreting plasmablast activity (via Media Educated from Neural Tissue / MENSA assays) to prove that local B-cells are actively manufacturing fresh antibodies in response to an ongoing tissue viral reservoir.
2. Advanced Biofluid & Vesicle Tracking
👉 Single-Particle Extracellular Vesicle & Particle Analysis: Isolating EVPs from blood to capture protected viral cargo (dsRNA, Spike, envelope proteins) that the virus uses to travel through circulation without being neutralized by surface antibodies.
👉 Urinary Extracellular Vesicles (uEVs):
Analyzing uEVs as a non-invasive window into central neuro-immune activity, renal/systemic microvascular stress, and co-pathogen signatures.
1/2 Continue
L Ward retweeted
This picture will always be iconic. RIP Margaret Hamilton who wrote the software that successfully guided NASA’s Apollo missions through the moon.
L Ward retweeted
Endocrine complications of COVID-19: diabetes, musculoskeletal, thyroid, pituitary, adrenal, and gonadal disorders
🚨COVID can trigger new diabetes, crash calcium, inflame the thyroid, and suppress testosterone or cortisol. Benefits of vaccination still dwarf the rare endocrine side-effects, says a 2026 Endocrine Society review.
➡️The USA review synthesizes English-language reviews and meta-analyses from March 2020 to June 2026 on endocrine effects of acute SARSCoV2.
➡️SARSCoV2 enters cells via ACE2, aided by TMPRSS2 and ADAM17. Damage occurs through direct invasion, cytokine release, autoimmunity, and medication effects, hitting pancreas, thyroid, pituitary, adrenals, gonads, and parathyroid/bone.
➡️1. Pancreas.
- New-onset diabetes rises after infection (relative risk 1.41 in a 12-study meta-analysis, about 1.37% prevalence in a 43-study review of 4.4 million patients, mostly type 2),
- Diabetic ketoacidosis and severe outcomes increase, especially in type 1 diabetes,
- Risk peaks in the first year and varies with severity, variant, age, and comorbidities,
- Metformin and DPP-4 inhibitors are noted as potentially protective,
➡️2. Thyroid:
- Non-thyroidal illness syndrome is the commonest change (pooled prevalence about 26%),
- Subacute thyroiditis and new autoimmune hypo- or hyperthyroidism also occur and track with severity (odds ratio 3.77 for abnormal tests in severe versus milder disease),
- Dysfunction can persist into longC0VID,
➡️3. Pituitary:
- Reported effects include hypophysitis, apoplexy, SIADH, rare central diabetes insipidus, and hypopituitarism (secondary adrenal insufficiency or hypogonadism), mainly after severe illness, via hypoxia, thrombosis, or inflammation,
➡️4. Adrenals:
- Adrenal insufficiency appears in roughly 3.5–6.8% of mild and 7–38.5% of severe cases, mostly central and often reversible.
- Primary failure is rare (haemorrhage, infarction, or adrenalitis).
➡️5. Gonads:
- Low total testosterone with normal LH, reduced libido, and erectile dysfunction are described, especially in longC0VID,
- Permanent infertility is not established,
- Higher male severity is not fully explained by androgens,
➡️6. Parathyroid/bone:
- Hypocalcaemia occurs in about 55% (range 23–78%, up to 87% by ionized calcium) and tracks with severity and mortality,
- Mechanisms include parathyroid invasion, vitamin D deficiency, and calcium use during viral entry,
- Remodelling shifts toward more osteoclasts, lower bone density, and higher vertebral-fracture risk,
- Hypercalcemia is rare.
➡️Most selected studies are non-randomized and heterogeneous.
‼️So, AGAIN, any tissue expressing ACE2 can be injured by SARSCoV2, so the largest absolute endocrine burden falls on the millions with mild-to-moderate infection rather than only the critically ill!
‼️Mild COVID-19 is not trivial for the endocrine system. The review notes that while severe infection produces the starkest individual complications, the largest overall burden falls on the far larger group with mild-to-moderate illness. Unexplained fatigue, rising blood sugar, neck pain, muscle weakness, low libido, or menstrual change after even a mild case therefore justify checking glucose or HbA1c, TSH, and calcium—and, when symptoms point that way, morning cortisol or testosterone, rather than dismissing them as ordinary post-viral tiredness. People who already have diabetes or adrenal insufficiency still need tighter sick-day attention, because a “mild” infection can unmask or worsen those conditions!
#AvoidSars #AvoidReinfections
academic.oup.com/jes/article…
L Ward retweeted
I can’t believe we have to say this, but the annihilation of two major American cities — more than 5 million people — is not a “small price to pay” for Trump's illegal war.
Neither are the 19 American troops and 3,000+ Iranians who lost their lives.
Our president is unhinged.
***Not NEW***
“Researchers discovered that patients w/ the condition have nearly 20 times more microscopic blood clots than healthy individuals. Unlike typical clots, these 'microclots' are wrapped in sticky, web-like structures”
(Check work by resiapretorius.net )
Scientists just found a reason for the exhaustion of long COVID — microscopic clots in the blood.
The study was published in the Journal of Medical Virology.
Researchers discovered that patients with the condition have nearly twenty times more microscopic blood clots than healthy individuals. Unlike typical clots, these 'microclots' are wrapped in sticky, web-like structures made of DNA and enzymes released by white blood cells.
These webs, known as neutrophil extracellular traps (NETs), act as structural armor, preventing the body from naturally breaking down the clots. This leads to a persistent blockage in the capillaries—the body's smallest blood vessels—which starves tissues of oxygen and drives chronic inflammation.
This discovery marks a massive shift in how post-viral illnesses are understood. Historically, many Long COVID patients struggled to find validation because standard blood tests routinely came back normal.
By showing that these microscopic clots are structurally bound to NETs, scientists are paving the way for targeted treatments, such as therapies designed to dissolve these persistent blocks. It also offers a glimmer of hope for millions suffering from other poorly understood chronic conditions, such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), where similar microclotting patterns have been observed.
source: Thierry, A. R., Usher, T., Sanchez, C., Turner, S., Venter, C., Pastor, B., Waters, M., Thompson, A., Mirandola, A., Pisareva, E., Prevostel, C., Laubscher, G. J., Kell, D. B., & Pretorius, E. Circulating Microclots Are Structurally Associated With Neutrophil Extracellular Traps and Their Amounts Are Elevated in Long COVID Patients. Journal of Medical Virology, 97(10), e70613.
L Ward retweeted
2021 would like to have a word 😂😂 We’ve known this for ages thanks to Prof Resia Pretorius et al. Where have these scientists been for the past five years 😂
Scientists just found a reason for the exhaustion of long COVID — microscopic clots in the blood.
The study was published in the Journal of Medical Virology.
Researchers discovered that patients with the condition have nearly twenty times more microscopic blood clots than healthy individuals. Unlike typical clots, these 'microclots' are wrapped in sticky, web-like structures made of DNA and enzymes released by white blood cells.
These webs, known as neutrophil extracellular traps (NETs), act as structural armor, preventing the body from naturally breaking down the clots. This leads to a persistent blockage in the capillaries—the body's smallest blood vessels—which starves tissues of oxygen and drives chronic inflammation.
This discovery marks a massive shift in how post-viral illnesses are understood. Historically, many Long COVID patients struggled to find validation because standard blood tests routinely came back normal.
By showing that these microscopic clots are structurally bound to NETs, scientists are paving the way for targeted treatments, such as therapies designed to dissolve these persistent blocks. It also offers a glimmer of hope for millions suffering from other poorly understood chronic conditions, such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), where similar microclotting patterns have been observed.
source: Thierry, A. R., Usher, T., Sanchez, C., Turner, S., Venter, C., Pastor, B., Waters, M., Thompson, A., Mirandola, A., Pisareva, E., Prevostel, C., Laubscher, G. J., Kell, D. B., & Pretorius, E. Circulating Microclots Are Structurally Associated With Neutrophil Extracellular Traps and Their Amounts Are Elevated in Long COVID Patients. Journal of Medical Virology, 97(10), e70613.
Further proof that COVID can escalate problems in people with ADHD, particularly executive function. When a virus damages the very dopamine neurons your brain already struggles to regulate, the executive function cliff isn't psychological—It’s a physical brain issue
#ADHD #Covid
A new brain imaging study has uncovered what researchers describe as the strongest evidence so far that long COVID is associated with damage to dopamine-releasing neurons in the brain.
ow.ly/J8Nw50ZRRKj
