March 15th is LongCovid Awareness Day, recognized in the U.S. and the U.K., and in Canada, and Sweden, but not yet by the United Nations.
A bit about my biggest concern - the brain - from James Throt, MD:
Covid: A Brain Damaging Story
I believe that in the absence of large scale studies and conducting brain imaging on a mass scale, we have to rely upon ourselves to turn to real world examples we may already be witnessing. Some questions about what you may be seeing. Now before we delve deeper into this, I think it would be felicitous to provide a little background first. MRI brain imaging has previously revealed that Covid reduces the thickness of grey matter within the frontal and temporal lobes. This would mimic symptoms of FTD [Frontotemporal Dementia].
So to the questions. I am going to show you a wide spectrum of symptoms which arise from damage to the frontal and temporal lobes. I will be using the NHS’s definition of Frontotemporal Dementia for reference. Are you noticing one or more of the following in yourself or others?
Are you noticing one or more of the following in yourself or others? Since we are at a very early stage in the progression of such damage, these symptoms could be mild/subtle versions of one or more of these, but should not be disregarded, especially if they’re new or worsening.
It should also be noted that damage to this specific area of the brain within the cerebral cortex can cause sociopathic behaviour. Additionally, this induces the “slow and insidious loss of the capacity for moral rationality.” Have you noticed anything akin to this?
The final question to ask yourself is how might this manifest itself amongst the general population and what might we start to see? Or are we already seeing it? Think hard. Because if you yourself have such damage, this won’t be easy to recognise due to “impaired judgement”. It will be challenging to recognise this happening to yourself because damage to this area of the brain specifically causes decreased self-awareness. Patients with FTD rarely ever recognise the alterations in themselves, and rely upon others to notice such changes early on. To be absolutely clear, the damage right now is slight. Many people are only on covid infection number one or two. The damage will be compounded in those with repeated infections. The progression of such damage can be very slow, so noticing early signs is of paramount importance. As a side note, Alzheimer’s (AD) can take many years to evolve. Preclinical AD can last for decades and you wouldn’t notice any symptoms during this stage. I am using AD as an example to show how slow neurological disorders can progress, although progression can be rapid. Facts are indisputable (so don’t claim otherwise), and they are backed entirely by evidence: Covid damages the frontal and temporal lobes. Damage to this region of the brain would mimic/cause symptoms of Frontotemporal Dementia. Piece that puzzle together.
Anneke added her own story:
Case in point: After 1st C19 infection, my kind, independent Mom began exhibiting lack of empathy/apathy. 2+ infections later, dramatic behaviour changes. MRI showed “atrophy disproportionately marked in right to temporal lobe.” Now she’s most difficult resident in 24hr facility. 🙁 MRI summary: Multiple sm areas of increased signal intensity in frontal parietal and posterior temporal lobe white matter consistent w/mild changes of leukoaraiosis. Disproportionately marked in right cerebral hemi, particularly right to temporal lobe. Pattern=possible form of FTD.
This MRI is a year old now. And it was only made possible after my Dad, desperate for answers, pleaded in person at hospital. By some miracle, my Mom got on a cancellation list and had an appointment within a week. I say this because due to outrageous wait times, there’s so many out there with no MRI/diagnosis.
To put rapid onset in perspective, my Mom and Dad were still living independently at home until Jan/23. Due to Mom’s decline, we moved them to assisted living with dementia program and sold the house. By July/23, due to shocking behaviour, we had no choice but to move Mom to memory care facility.
Suffice it to say, it’s been a devastating year for our family. Especially my Dad, who still spends every day with my Mom and finds ways to cope with her disturbing behaviours. And we’re all still trying to process the loss of our Mom while clinging to brief glimpses of pieces of her still left. I really miss my Mom. And sometimes, I even whisper this to her while I sit in a chair beside her bed on those rare occasions that I can get her to relax enough to lie down, close her eyes and have a much needed nap.
Dr. Throt responded: "I’m hearing an increasing number of stories all too similar to this. It’s hard not to despair daily at the fact we’ve allowed covid to run rampant and reinfect the population continually for years. This will soon be considered common."
Anneke: "This is unimaginably horrifying. Who will look after everyone? As it stands right now, it’s a struggle to retain proper staff where my Mom is. And with the exception of trusted few, most have no idea how to interact with her. And my Dad is spending his last dollar on a top of line facility."
Dr. Throt: "Well the younger generations coming through and being repeatedly infected in schools/colleges etc won’t be able to look after anyone, or even themselves, if we carry on this trajectory. Going to school should help develop the brain, not destroy it."
Anneke: "Terrifyingly true. I have a high schooler, and after two suspected and one confirmed infection - having already had LC symptoms including fatigue, dizziness and digestive issues - this is what I worry about most for him. And for us all. Thank you for shining this spotlight."
Another very brief personal example from Dame Sa:
I have organ damage from Covid. People be like:
* It's vaccines! --> I had Covid in March 2020. Pre-vaccines.
* You were old/unhealthy! --> I was 39, fit and healthy, with no health issues.
* It's rare! --> Over 100 million globally. That we know about. So far.
'With the rise in Covid-19 cases fueled by new variants, the number of Long Covid cases will keep increasing. This is a wake-up call for global and country-level efforts to mitigate the impacts of Long Covid.' [Global Issues, September 2022]
Meanwhile, from D.Dave,
1) USA: Remove isolation, end tele-health for Medicare, end isolation guidelines, Downgrade to BSL2.
2) UK: Convince public that everyone who susceptible to LongCovid already has it, and it’s no longer a concern.
3) AUSTRALIA: Tell them to stop calling it LongCovid.In my opinion, they are gaslighting the hell out of you, and when you end up like me, I promise you there is no net. You will be buried in a torture chamber you wish you never discovered. Trapped in a body that destroys you financially, socially and leaves you wishing for death. This virus continues to devastate. Nobody knows why, nobody knows what to do about it. The cumulative damage is adding up and nobody wants to admit it. Governments hide the data, they conflate and confuse. They just want you to grind away until you die. And when you’ve become like me, they cast you aside. And you will watch as the rest of the world moves on without you in horror. You will know what it’s like to be all the things you ignored and you will realize you’ve been duped. Insurance companies don’t want to pay for this. Politicians want no accountability. The public has been lulled into complacency as one by one individuals join our ranks every damn day. Wake the fuck up. LongCovid is an emergency.
Thanks for reading THIS far!! But here's just one more thread of recent studies from Emmanuel:
If we just take the year 2024, there have been so MANY STUDIES on LONG COVID !!! (mega-thread🧵 for those who try to minimize post-acute sequelae)
1) Organs damage persist one year after, in 59% of Long Covid patients, and MULTIPLE ORGANS damage for 29% patients. A very good article. A video. A study.
2) the immune dysregulation: A very complete review! Section snippets with reference studies: Immune dysregulation and Long Covid. Systemic inflammation is a characteristic feature of Long Covid. Post-Covid-19 dysregulation in myeloid cells and neutrophils. Acute perturbation of NK cells associates with Long Covid development. Elevated SARS-CoV-2-specific antibodies and the viral reservoir hypothesis. Herpesvirus antibody responses immplicate immune dysregulation rather than active viremia as driver of Long Covid. Autoimmune antibody responses during Long Covid: are they really the bad guys? LC is associated with active T cell responses particularly in tissue compartments. LC alters T cell phenotypes in ways suggesting changes in functional, migratory, and exhaustion states of T cells. Dis-coordinated T cell and antibody responses in LC. Animal models of LC. Highly recommended review.
3) The infection of bone marrow: How SARS-CoV-2 'seeds' infection from bone marrow to the platelets (layman terms): Bone marrow plays a vital role in the immune system by producing various types of cells. The production of immune cells is essential for maintaining an effective immune response to protect the body, and unfortunately these cells in bone marrow are infected by the SARS-CoV-2. It infects macrophages present in bone marrow using a receptor other than ACE2, Neuropilin-1. . . . SARS-CoV-2 infects also in bone marrow the megakaryocytes, large cells found in the bone marrow that are responsible for producing platelets, which are essential for blood clotting. Infection of megakaryocytes is associated with severe viral infection in Covid-19 and drives the formation of pathogenic afucosylated IgG antibodies. If megakaryocytes become infected, they may 'seed' infection of the platelets. This could lead to degranulation or deficits in platelet energy metabolism. In addition, because platelets harbor and carry saratonin, platelet infection could contribute to hormonal dysregulation.
4) Traumatic brain injury: A review with a lot of references studies about "Traumatic Brain Injury in the Long Covid Era."
5) The iron dysregulation: "Defects in iron homeostasis, possibly contribute to inefficient oxygen transport, inflammatory disequilibrium and persisting symptomatology. . . . We present an extended longitudinal characterization of 214 SARS-CoV-2-infected individuals, from asymptomatic to requiring ventilation, who were followed for up to one year from teh first SARS-CoV-2-positive swab or symptom onset. Combined analysis of longitudinal immunological, transcriptomic and clinical data indicated inflammation-driven iron dysregulation that persisted beyond two weeks in patients who were hospitalized with Covid-19 and which had apparent physiologicla repercussions for erythropoiesis and iron homeostasis months after infection. . . . We suggest unresolved inflammation affects long-term pathophysiology through disruptions to cellular iron mobilization and defective, iron-starved stress erythropoiesis that fails to correct the pronounced inflammatory anemia of early disease. Vaccination, or selective antiviral or monoclonal therapy, may prevent sustained disruptions to iron homeostasis driven by severe uncontrolled inflammation. In those with worse disease, treatments directed at correcting abnormal iron distribution might also be considered."
6) The forgotten of Long Covid: "Three months post-ICU, caregivers experienced caregive strain (32%), anxiety (41%), depressive symptoms (16%) and PTSD (24%). Caregiver anxiety symptoms were associated with worse levels of quality of life one year after."
7) Loss and smell lost: "One possible mechanism could be the direct penetration of SARS-CoV-2 into the cerebrospinal fluid from non-neural cells of the olfactory epithelium."
8) The Complement dysregulation: Complement dysregulation is a hallmark of Long Covid. Complement biomarkers associate with the diagnosis of Long Covid. Complement inhibition is a potential therapy for Long Covid. . . . "Complement dysregulation is a common feature of diverse acute and chronic inflammatory diseases and a major driver of inflammation. There is now a wealth of evidence to indicate that SARS-CoV-2 can persist in tissue reservoirs long after resolution of the acute infection, providing a biologically feasible mechanistic trigger for the inflammatory processes that characterize Long Covid. Moreover, SARS-CoV-2 activates the complement system both directly and indirectly, especially via the amplification loop to drive endothelial damage and inflammation in acute Covid-19."
9) Behind the brain fog, a disruption of blood-brain barrier: "We show that Blood-brain barrier disruption is evident during acute infection and in patients with Long Covid with cognitive impairment, commonly referred to as brain fog." They examined blood samples from 76 patients who were hospitalized with acute Covid in early 2020, comparing findings with pre-pandemic samples from 25 other patients to look for any differences in coagulation patterns and immune response. Those who reported brain fog had higher levels of a protein (S100ẞ) produced by brain cells not normally found in the blood, which hinted at a 'leaky' blood-brain barrier. . . . "Our results suggest that Long Covid-derived brain fog is associated with BBB disruption and sustained systemic inflammation. BBB dysfunction was unique to the cohort with brain fog, with disruption evident up to 1 year after active infection in multiple neuroznatomical regions, including the TLs and frontal cortex."
10) The persistent cough and dyspnoea: Persistent diffusion impaired restriction was identified as a key feature of pulmonary Long Covid.
Maybe question the bullocks articles about studies from politicalized CMOs, which got an early release of a pre-print (not yet peer-reviewed), with the headline: "Time to stop using term 'Long Covid' as symptoms are no worse than those after flu," but, near the very end of the article, they say, "The study is observational, based on reported symptoms with no physiological or detailed functional follow-up data," and then further explain that the very high vaccination rate in the area might also affect the results.
By contrast, a study published in December looked at 81,280 patients hospitalized for Covid-19 and 10,985 patients hospitalized for the flu, and found that Covid-19 patients had a 50% greater risk of death than flu patients:
"Influenza patients, more than Covid patients, suffered from poor respiratory outcomes . . . But over and over, the study showed outcomes were worse for Covid patients. . . . Except for the pulmonary system, Covid patients saw adverse health outcomes across all organ systems."
There's no cure. There is only prevention. Avoid getting Covid like it's the plague!! But you can also avoid the flu! We don't have to accept ongoing illness from viruses. Just wear a well-fitting N95 to keep your brain and body alive!
ETA: One more thing -- statement from Dr. Ziyad Al-Aly: "Long Covid is a significant global challenge that must decisively be addressed."
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