nothing so far has eased my uncertainty
I may have befriended some paper wasps by leaving them alone, but also by leaving a shallow basin of water on the back steps so I can clean my flip-flops and feet after watering the garden. I usually empty it into a braided hibiscus by the door, but last night I forgot so today I opened the door to a paper wasp beach party. They were having a great time, it’s really hot outside, and I have gardened beside them for weeks without incident, so I gently shut the door and backed away, leaving them to their fun. I’ll dump the basin after dark and refill the watering station I had for the butterflies and bees, and put it away from the door.
They’re beautiful. I need to fix my phone so I can post my own things. There are so many “befores” happening around here and by the time I get around to fixing my phone they will be “afters”.
Today is a covidy day, my immune system or allergies are causing lymph nodes to blow up and my head to swim, and I’m sitting in the dark by a fan, preventing a migraine after a telehealth appointment. It wasn’t that there was bad news or anything, just that there are no answers except rest, symptom treatment, and offers to up the dose! I don’t want to up the dose, I want to see my kids more often, go to grad school, do field work, build a chicken coop, ride my bike, buy groceries in person, see an entire movie without pausing for a nap. How do I do that? Are my mitochondria on strike? How do I meet their demands? I’m glad the panic attacks are gone, but I’m still broke, sick, and stuck here. I’m not depressed, I’m annoyed and frustrated, and who wouldn’t be?
A few days ago I checked the /covidlonghaulers subreddit, and had one of those moments where time stops and the words in front of me are the only thing in the room, when a stranger out in the ether echoes a mood or an emotion I could not make into words myself, and it is devastating, because one of the most mentally tormenting things about this affliction is being in a superposition of healing and dying, hoping and giving up. After every new piece of information, press release, and question answered “I wish I knew, I don’t know what to tell you,” whether about long covid or some other post-infection malady since reading the following, a voice inside whispers:
I wish someone could just tell me if I’m gonna be ok
I am so sick of having potentially deadly symptoms man I just wanna know if I’m gonna be ok but there’s really no way to tell.
… but no new information tells us what we want to know — how do we make a living? How do we live? I get not wanting to read, hear, talk or write about covid — it is everywhere if you look but not if you don’t want to know, so either way it’s over-saturated content that people are either sick of seeing or have the luxury of disinterest in the topic. I totally get it. I would rather be writing about books I like or even try to write and draw books and pictures y’all would like. I don’t want to write about how hot it is every day, because nothing has changed in weeks, it is still very hot and it still hasn’t rained. I don’t want to talk about long covid because the changes don’t matter if I’m sick a different way every few days. I just want to know if I’ll ever be able to ride my bike again or lift my grandaughter without becoming bedridden.
Effectively working with individuals experiencing long COVID (postacute sequelae of SARS-CoV-2) will require an approach that conceptualizes the condition as an "episodic disability" similar to disability patterns associated with HIV — but that's just the beginning of what needs to change, say authors of a recent commentary. The shift in perspective will also demand more customized outcome measures and require more reliance on rehab providers to grow the evidence base for treatment.
Authors of the commentary, published in BMJ Global Health, argue that it's crucial to establish a conceptual construct of disability "for better understanding the lived experiences and health-related challenges of people living with and affected by long COVID." Their opinion: Long COVID should be thought of as an "episodic health condition" that results in disability in multiple areas, with severity levels that rise and fall unpredictably.
I make an observation about long covid and in my post-visit write-up the clinic’s notes are so detailed, I realized I provided far more information than I have received. Maybe I am the doctor now. I know that there is a lot of research going into this and keeping up with it isn’t the easiest thing but I wish someone would level with me before I lose my mind. I think we all hoped we’d be done with this by now. There are more waves on the way, please take precautions.
Abstract
The coronavirus disease 2019 (COVID-19) pandemic caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection has resulted in a serious public health burden worldwide. In addition to respiratory, heart, and gastrointestinal symptoms, patients infected with SARS-CoV-2 experience a number of persistent neurological and psychiatric symptoms, known as long COVID or "brain fog". Studies of autopsy samples from patients who died from COVID-19 detected SARS-CoV-2 in the brain. Furthermore, increasing evidence shows that Epstein-Barr virus (EBV) reactivation after SARS-CoV-2 infection might play a role in long COVID symptoms. Moreover, alterations in the microbiome after SARS-CoV-2 infection might contribute to acute and long COVID symptoms. In this article, the author reviews the detrimental effects of COVID-19 on the brain, and the biological mechanisms (e.g., EBV reactivation, and changes in the gut, nasal, oral, or lung microbiomes) underlying long COVID. In addition, the author discusses potential therapeutic approaches based on the gut-brain axis, including plant-based diet, probiotics and prebiotics, fecal microbiota transplantation, and vagus nerve stimulation, and sigma-1 receptor agonist fluvoxamine.
After this, I’m just sharing things partially read. I’m losing steam right now. This was originally a draft with links to a bunch of articles and research about long covid, and I wrote in between. If you are still interested in reading a bunch of articles I plan to get back to reading later, the following are things about long covid that were hanging in my browser tabs for a really long time.
Long Covid can impair quality of life more than advanced cancers, study says
Dr Henry Goodfellow, a researcher at the UCL Institute of Epidemiology and Health who co-led the study, said: “Our results have found that long Covid can have a devastating effect on the lives of patients – with fatigue having the biggest impact on everything from social activities to work, chores and maintaining close relationships.”
What Happens When You Still Have Long COVID Symptoms?
“There is no one pill or strategy that helps everybody,” says neurologist Lindsay McAlpine, MD, director of the Yale NeuroCovid Clinic and one of many Yale Medicine specialists who care for Long COVID patients. But there is a growing understanding that people experience the condition in different ways, leading to an individualized approach to treating their symptoms.
What doctors wish patients knew about long COVID-19 brain fog
Brain fog—one of long COVID’s most misunderstood symptoms—is a name that has gained more traction to refer to a range of neurological symptoms such as feeling slow, difficulty thinking or concentrating, confusion and forgetfulness. Nearly half of patients report either poor memory or brain fog, according to a JAMA Network Open study on long COVID symptoms. And it doesn’t just afflict patients who were sick enough to need a ventilator or hospital care—it can affect anyone who has been infected with SARS-CoV-2.
In 2021, the AMA House of Delegates adopted policy to support “the development of an ICD-10 code or family of codes to recognize Post-Acute Sequelae of SARS-CoV-2 infection (‘PASC’ or ‘long COVID’) and other novel post-viral syndromes as a distinct diagnosis.”
Long COVID Now Looks like a Neurological Disease, Helping Doctors to Focus Treatments
The most common, persistent and disabling symptoms of long COVID are neurological. Some are easily recognized as brain- or nerve-related: many people experience cognitive dysfunction in the form of difficulty with memory, attention, sleep and mood. Others may seem rooted more in the body than the brain, such as pain and postexertional malaise (PEM), a kind of “energy crash” that people experience after even mild exercise. But those, too, result from nerve dysfunction, often in the autonomic nervous system, which directs our bodies to breathe and digest food and generally runs our organs on autopilot. This so-called dysautonomia can lead to dizziness, a racing heart, high or low blood pressure, and gut disturbances, sometimes leaving people unable to work or even function independently.
Chronic inflammation, neutrophil activity, and autoreactivity splits long COVID
While immunologic correlates of COVID-19 have been widely reported, their associations with post-acute sequelae of COVID-19 (PASC) remain less clear. Due to the wide array of PASC presentations, understanding if specific disease features associate with discrete immune processes and therapeutic opportunities is important. Here we profile patients in the recovery phase of COVID-19 via proteomics screening and machine learning to find signatures of ongoing antiviral B cell development, immune-mediated fibrosis, and markers of cell death in PASC patients but not in controls with uncomplicated recovery. Plasma and immune cell profiling further allow the stratification of PASC into inflammatory and non-inflammatory types. Inflammatory PASC, identifiable through a refined set of 12 blood markers, displays evidence of ongoing neutrophil activity, B cell memory alterations, and building autoreactivity more than a year post COVID-19. Our work thus helps refine PASC categorization to aid in both therapeutic targeting and epidemiological investigation of PASC.
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