Hi 👋,
Hope everyone who celebrated Thanksgiving 🦃 in the US enjoyed it!
I was pleasantly surprised that this week had so much positive news in the potential- treatments section! Given the holidays are right around the corner, it seems like an early present. I am hopeful that this will mean a larger uptick in research in 2023 (fingers crossed).
As mentioned in prior weeks, this newsletter has an informal partnership with Visible Health. For those who are interested in using the App, they released the Visible Beta app very recently. For more information, please see here. Words from the company themselves ‘We want to make tracking your condition and taking part in research available to as many people as possible, as soon as possible.’
📰 Media
Long COVID: How clusters of symptoms have emerged and changed over the pandemic
From ABC news:
Jason Kovacic, a cardiologist at the Victor Chang Cardiac Research Institute, says it's still the case that a very sick person is more likely to develop long COVID, but now people with an extremely mild case can end up in a bad way.
Just as different variants (and subvariants) of the SARS-CoV-2 virus have wreaked various levels of havoc on our body, it appears they impart different lingering after-effects too.
"Different strains of the virus are interacting with immune systems differently and triggering different events," Professor Kovacic says.
"The likelihood of getting long COVID was probably double with Delta than what it is with Omicron.
Majority of people with long Covid ‘report experiencing some form of stigma
From the Independent:
Researchers for the study, published in the journal Plos One, found 95% of sufferers have experienced some form of stigma, while 76% reported experiencing it “often” or “always”.
Dr Marija Pantelic, lecturer in public health at Brighton and Sussex Medical School, said: “The stigma attached to long Covid is harming people living with long Covid and is likely to leave a devastating mark on our society and health service provision.
Some 61% of people said they were very careful who they tell about their condition, with around one third (34%) of respondents regretting telling people about it.
Week 50 Household Pulse Survey: October 5 - October 17
From the US Census Bureau:
Nearly 14 million Americans have a form of Long Covid that affects their day-to-day activities at least a little bit. This is crazy high!
🔍 Research
One-year temporal changes in long COVID prevalence and characteristics: a systematic review and meta-analysis
⚠️ abstract only
From the Value in Health Journal:
The temporal change of any long COVID symptom showed a steep decrease initially (from 92% at acute phase to 55% at 1-month follow-up), followed by stabilization at approximately 50% during 1-year follow-up.
The temporal changes in the prevalence and characteristics speculate that long COVID may persist longer than expected. In particular, we should pay more attention to neuropsychiatric symptoms and other symptoms for which there is no significant downward trend in prevalence.
Neutrophil Assessment in ME/CFS
⚠️Study has not yet been conducted yet
From the OMF:
Neutrophils are a type of white blood cell and part of the immune system. They help your body to fight off infections, respond to allergens, and heal from injuries. Neutrophils form in the bone marrow and, once mature, circulate throughout your bloodstream, waiting for “invaders” (infections, allergens, or injuries).
Previous studies of neutrophils in ME/CFS have shown some abnormalities, with a variety of findings related to different measurements of neutrophil activity, but these studies have not yet fully defined neutrophil dysfunction and its potential contribution to chronic inflammation in the disease.
Using blood samples from both ME/CFS patients and healthy controls, this study will compare many different characteristics of neutrophils, both before and after inflammation, looking for differences and abnormalities.
Innate metabolic responses against viral infections
From Nature:
Viruses have developed various mechanisms to evade the immune system and replicate. One of these mechanisms relies on manipulation of the host metabolism by targeting key metabolic nodes and disrupting critical metabolic pathway
recent evidence has revealed a significant metabolic defense mechanism in response to infection. Such an ‘innate metabolic response’ intricately coordinates with the immune system to mount a robust and broad-spectrum antiviral response
Immune cellular metabolic reprogramming during viral infections may occur to meet newly required bioenergetic and biosynthetic demands of the host to fight infection, but it can be exploited by the virus itself to replicate. This metabolic reprogramming during infection represents a coevolutionary mechanism that allows survival of both the virus and the host.
My Take: This was a really interesting piece. Although not directly related to ME/CFS or Long Covid it shows how our metabolisms respond to a viral infection which may be a trigger for Long Covid or ME/CFS. The piece is highly technical but very interesting (from what I understood)
🩺 Hope & Potential Treatments
PATIENT-LED RESEARCH COLLABORATIVE ANNOUNCES $4.8 MILLION IN BIOMEDICAL RESEARCH AWARDS FOR LONG COVID AND ASSOCIATED CONDITIONS
From the Patient-led Research Initiative:
Patient-Led Research Collaborative (PLRC) is a multi-disciplinary group of people with lived experience of Long COVID, formed together in April 2020 through the Body Politic COVID-19 Support Group, and were the first to conduct research on Long COVID.
The Patient-Led Research Collaborative’s Patient-Led Research Fund announced $4.8 million in biomedical research awards today, funding 9 research projects in Long COVID, ME/CFS, dysautonomia, and associated conditions.
My take: This is amazing news! All 9 projects(along with descriptions) are listed within the link. I think it is amazing to see a group of people with lived experience of chronic illness be able to give out this money for research.
Tevogen Bio to Study Therapeutic Potential of its Investigational COVID-19 T Cell Therapy in Long COVID
From Businesswire:
Tevogen Bio, a late-stage clinical biotechnology company specializing in the development of cellular immunotherapies in oncology, neurology, and virology announced today its intention to study potential therapeutic use of its investigational COVID-19 T cell therapy, TVGN-489, in Long COVID. The finding that none of the patients in the TVGN 489 Proof-of-Concept (POC) trial, treated for their initial COVID infection, developed Long COVID to date is leading Tevogen to explore the potential of TVGN 489 to also treat Long COVID.