Hi everyone,
I would like to take this opportunity to apologize about a previously cited article from Crain's Chicago Business in our last newsletter. The article highlighted Northwestern Medicine's research on long COVID and primarily focused on the patient demographics seen in their clinic.
One of our readers offered a thoughtful critique of the article, discussing the skewed representation in the media of long COVID sufferers. This critique accurately points out that the article seems to imply that long COVID predominantly affects white women in their 40s, a notion that can be misleading and harmful.
I fully acknowledge the importance of understanding the wider context around the data presented in the article. The cited patient demographics represent a small subset of patients who were able to access specialized long COVID clinics, and this does not reflect the full picture of long COVID prevalence.
The demographic profile outlined by Northwestern Medicine should not be taken to imply that long COVID is predominantly a disease affecting white women in their 40s. The reader accurately highlighted that such a conclusion might sideline other demographic groups who are also significantly affected by long COVID, but may not have the same access to healthcare resources. Given this reality, it is important to be mindful that the demographics of long COVID sufferers are likely to be far more diverse than those able to access specialized clinics.
Seeing published work in a wider context is critical to gaining an understanding of the bigger picture of Long Covid. We try to flag articles we do not agree with but obviously don’t catch them all. We encourage readers to make comments in the chat or send us an email, to help raise awareness for everyone. In this instance, we should have chosen not to publish the article, or at least made comments under “my take” as to why this article could be harmful to the Long Covid community. We truly appreciate everyone’s feedback, and use it to help improve the newsletter for the future.
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In this edition, we explore groundbreaking app-based health studies launched by Imperial College London and Visible, shedding light on the long-term effects of Covid-19. We also delve into the intriguing topic of why some individuals seem to catch the virus but never experience any symptoms. Moreover, one article discusses the remarkable abilities of scent dogs in detecting Covid-19. With a focus on early indicators and cognitive performance, the research articles aim to deepen our understanding of Long Covid. Lastly, we explore the connections between Covid-19 and diabetes, uncover the inflammatory responses triggered by the virus, and investigate gastrointestinal symptoms and alterations in serum metabolites.
Media
SUMMARY:
Patient-led start-up Visible has launched two app-based health studies in collaboration with researchers at Imperial College London.
Visible is now expanding the app's use by working with researchers from Imperial's Faculty of Medicine to launch two new research studies hosted within the app.
My Take:
The app-based approach taken by Visible empowers patients and facilitates data sharing, ultimately advancing scientific knowledge and potentially improving the lives of millions suffering from this condition.
Really excited to see where this goes!
Article: Why some people catch Covid but never get sick - STAT
DEFINITIONS:
HLA (human leukocyte antigen): A molecule that helps the immune system surveil every cell of the human body and is critical during the earliest stages of infection.
SUMMARY:
In a study published in Nature, scientists from the University of California, San Francisco found a mutation that increases a person's chance of being asymptomatic from Covid-19 by nearly tenfold..
The mutation is in the HLA gene and is known as HLA-B*15:01.
This version of HLA is good at recognizing and clearing SARS-CoV-2 due to its ability to grab bits of other coronaviruses that cause seasonal colds.
The discovery of this mutation could aid in the development of more effective vaccines in the future.
Further research is needed to determine if individuals with this mutation are contagious or if they clear the virus fast enough to prevent transmission.
My Take:
Personally, I know several people who never got covid, I am very curious to know if this is the reason why?
DEFINITIONS:
Brain Fog: A symptom commonly reported in long Covid characterized by difficulties with memory, concentration, and mental clarity.
SUMMARY:
Brain fog symptoms associated with long Covid are comparable to aging 10 years, researchers have suggested.
In a study by King's College London, researchers found cognitive impairment to be highest in individuals who had tested positive for Covid-19 and had symptoms for more than three months.
The study, published in a clinical journal by The Lancet, also revealed that the symptoms of long Covid can persist for almost two years since initial infection.
The study included more than 5,100 participants and found that cognitive deficits were comparable to an increase in age of approximately 10 years.
Article: Super Sniffers: Scent Dogs Excel in COVID-19 Detection - Neuroscience News
DEFINITIONS:
RT-PCR: real-time reverse-transcription polymerase chain reaction, a standard laboratory technique used to detect and quantify RNA molecules.
SUMMARY:
New research suggests that scent dogs may provide a faster and more efficient way to detect COVID-19, even outperforming conventional RT-PCR tests.
In studies involving over 31,000 samples, dogs were able to identify COVID-19 in symptomatic, pre-symptomatic, and asymptomatic individuals, as well as detect new variants and long COVID.
Scent dogs demonstrated similar or better sensitivity and specificity in COVID-19 detection compared to standard RT-PCR tests.
The dogs could detect COVID-19 in symptomatic, pre-symptomatic, and asymptomatic patients, along with new COVID variants and even long COVID.
A major benefit of using the dogs was their speed – they could provide a result in seconds to minutes, and did not require expensive lab equipment or create mountains of plastic waste, unlike conventional diagnostic approaches.
My Take:
The speed at which the dogs can provide results, without the need for expensive lab equipment, could make them a valuable resource in future pandemics.
This also reminds me of the story of the person who could smell Parkinson's disease. I wonder if all diseases have a scent and our noses are just too weak to pick it up?
Article: Study explores early indicators of long COVID
DEFINITIONS:
Viral dynamics: The changes in the concentration and behavior of viruses within a host over time.
Adaptive immune responses: Immune responses that are specifically tailored to target and eliminate a particular pathogen, such as the production of antibodies.
SUMMARY:
In a recent study, researchers investigated early biomarkers of post-acute sequelae of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection (PASC) in a household-based cohort of individuals intensively sampled during the acute phase of coronavirus disease 2019 (COVID-19).
The study found that early viral dynamics and adaptive immune responses were key early biological determinants of PASC, suggesting that individuals who could control viral replication and ongoing viral persistence quickly recovered from infection and did not develop PASC.
Higher antigen burden during the acute infection phase and the immune response to that burden were found to contribute to the development of PASC in the months following infection.
Early interventions such as antiviral therapies, monoclonal antibodies, or therapeutic vaccination may alter the magnitude and duration of infectious viruses and the associated immune response to affect PASC development
Research
DEFINITIONS:
Patient and public involvement and engagement (PPIE): Refers to the active participation of patients and the public in health research.
PPIE involves including patients and the public as partners in the research process, ensuring that their experiences and insights are incorporated into the design, conduct, and dissemination of research.
SUMMARY:
Patient and public involvement and engagement (PPIE) can provide valuable insights into the experiences of those living with and affected by a disease or health condition.
Inclusive collaboration between patients, the public and researchers can lead to productive relationships, ensuring that health research addresses patient needs.
Guidelines are available to support effective PPIE; however, evaluation of the impact of PPIE strategies in health research is limited.
My Take:
The involvement of patients and the public in health research is crucial for ensuring that research is patient-centered and addresses their needs.
This is especially pertinent for Long Covid, a condition that is still ill-defined and without approved treatments.
The Patient-Led Research Collaborative is one organization that has worked hard to include Long Covid patients in the research process: https://patientresearchcovid19.com/
Article: As COVID-19 cases rose, so did diabetes — no one knows why
DEFINITIONS:
Type 1 diabetes: a disease in which the body's immune system attacks the cells in the pancreas that produce insulin, resulting in high blood sugar levels.
SUMMARY:
A study of more than 38,000 young people has confirmed that the COVID-19 pandemic led to an increase in cases of type 1 diabetes in children and teenagers.
The incidence of type 1 diabetes in children and teenagers under 19 years old was about 14% higher during 2020, the first year of the pandemic, than in the previous year, and it rose 27% in the second year of the pandemic.
My Take:
The study provides further evidence that the COVID-19 pandemic has had an impact on the incidence of type 1 diabetes in young people.
While the exact cause of the increase is still unknown, the findings suggest that there may be other factors at play beyond the direct effects of the virus.
Mediators via Activation of Distinct Receptors on Human Microglia Cells | SpringerLink
[PAYWALLED]
DEFINITIONS:
TLR4 receptor: Toll-like receptor 4, a protein that plays a key role in the innate immune response by recognizing pathogen-associated molecular patterns.
ACE2 signaling: Angiotensin-converting enzyme 2, an enzyme that is the receptor for the spike protein of SARS-CoV-2 and is involved in multiple physiological functions.
ACE2 signaling refers to the signaling pathways activated by ACE2 receptor binding.
SUMMARY:
SARS-CoV-2 infection produces neuroinflammation associated with neurological, neuropsychiatric, and cognitive symptoms that persist well past the resolution of the infection, known as post-COVID-19 sequelae or long COVID.
In this study, researchers found that recombinant SARS-CoV-2 spike protein stimulates the release of pro-inflammatory IL-1b, CXCL8, IL-6, and MMP-9 from human microglia cells via TLR4 receptor activation.
Furthermore, they found that the recombinant receptor-binding domain (RBD) of the spike protein stimulates the release of TNF-α, IL-18, and S100B from human microglia cells via ACE2 signaling.
My Take:
The findings suggest that the spike protein of SARS-CoV-2 can activate microglia cells in the brain, leading to the release of pro-inflammatory molecules.
Personally, several cytokine markers were elevated months after the initial infection, which I believe contributed to my course of illness.
DEFINITIONS:
Ectopic: in an abnormal place or position
SUMMARY:
Gastrointestinal symptoms of long COVID-19 are associated with ectopic colonization of specific bacteria that move between the upper and lower alimentary tract and changes in serum metabolites.
The study aimed to characterize the functional differential profile of the oral and gut microbiomes and serum metabolites in patients with gastrointestinal symptoms associated with longCovid.
Patients with gastrointestinal symptoms of long Covid showed significant differences in the gut and oral microbiota compared to mild COVID-19 patients without gastrointestinal symptoms and healthy controls.
Ectopic colonization of the oral cavity by gut microbes was observed in patients with gastrointestinal symptoms of long Covid at the 3-month follow-up.
My Take:
This study provides evidence that the gastrointestinal symptoms of long Covid are related to the movement of specific bacteria between the upper and lower digestive tract and changes in serum metabolites.
How in the world do gut microbes get to the mouth??
DEFINITIONS:
Hypercytokinemia: immune reaction in which the body releases too many cytokines into the blood too quickly
CSS: Cytokine storm syndrome is a subgroup of hypercytokinemia that is consistently associated with severe disease and requires both clinical severity and broadly elevated cytokines.
CAH: COVID associated hypercytokinemia is a distinct form of hypercytokinemia that is associated with acute infection but does not qualify as a subtype of CSS.
SUMMARY:
Previous studies have identified cytokines associated with respiratory virus infection illness outcome.
The study measured 38 plasma cytokines in SARS-CoV-2 infected and multisystem inflammatory syndrome in children (MIS-C) patients.
The results showed acute cytokine profiles and longitudinal dynamics of IL1Ra, IL10, MIP1b, and IP10 can differentiate COVID severity groups.
It was found that only 4% of acutely infected patients exhibited hypercytokinemia, highlighting the lack of association between cytokine storm syndrome (CSS) and COVID severity.
IL1Ra and TNFa were identified as potential biomarkers for patients at high risk for long COVID.
My Take:
It highlights the limited association between hypercytokinemia (CSS) and COVID severity, suggesting that elevated cytokine levels alone are not indicative of disease severity.
Furthermore, the identification of IL1Ra and TNFa as potential biomarkers for long COVID risk holds promise for predicting and managing long-term symptoms in patients.
The literature implicating TNFa and Long Covid is expanding…
My thoughts: long Covid could be under diagnosed among the population as many individuals will not make complaints about some symptoms especially those with lack of or insufficient medical insurance.
Appreciate this newsletter so much, and thank you for your opening note here. I am one of those white women long haulers in their 40s, but I know many women of color who suffer as well as a few white men. Professor Danny Altmann and his research colleagues now estimate that there are 400m long haulers worldwide. Astounding! So, definitely not mostly a white woman problem.