Long Covid Weekly #61: Mount Sinai & Federal Funding announcements, EBV lurking & more
Hi Everyone,
In this issue, we are thrilled to announce that Mount Sinai has received a generous $6.2 million grant from the Steven & Alexandra Cohen Foundation towards the clinical care of Long Lyme Disease. This funding will enable us to further our understanding and treatment of this chronic illness.
Additionally, we're pleased to share that the U.S. Department of Health and Human Services (HHS) has awarded $45 million in grants to expand access to care for individuals suffering from Long Covid.
We also explore new studies and articles highlighting the relationship between convalescent plasma, nervous system-related tropism of SARS-CoV-2, ABO blood group-related mechanisms of infection, cardiovascular autonomic dysfunction, and the presence of Epstein-Barr virus immunodeficiency in Long Covid patients. Furthermore, we shed light on the importance of patient-partnered research in addressing Long Covid and investigate the similarities between myalgic encephalomyelitis/chronic fatigue syndrome and fibromyalgia based on their cerebrospinal fluid proteomes.
Part of me thinks that I should rebrand this newsletter as a ‘post-viral syndrome’ newsletter but curious what others think.
Media
SUMMARY:
Mount Sinai’s Department of Rehabilitation and Human Performance has announced a $6.2 million grant from the Steven & Alexandra Cohen Foundation. The grant will expand the Cohen Center for Recovery From Complex Chronic Illnesses (CoRE) to encompass research and clinical care beyond long COVID to include “long Lyme Disease/Lyme+” as well as other infection-associated complex chronic illnesses.
This funding will be used for new research programs focusing on understanding and highlighting the key similarities and differences between long COVID; long Lyme disease/Lyme+, a collection of infection-associated chronic illnesses related to patients who were initially infected with tick- or vector-borne bacteria; and other infection-associated complex chronic illnesses such as myalgic encephalomyelitis/chronic fatigue syndrome, Ehlers-Danlos syndrome, and other tick-borne diseases.
The Cohen Center’s research program will maximize collaboration with the PolyBio Research Foundation's extensive network of scientific teams to analyze samples collected from participants with cutting-edge technologies.
DEFINITIONS:
Multidisciplinary: involving the expertise and cooperation of multiple professional disciplines.
SUMMARY:
The U.S. Department of Health and Human Services (HHS), through the Agency for Healthcare Research and Quality (AHRQ), announced nine grant awards of $1 million each for up to 5 years to support existing multidisciplinary Long COVID clinics across the country to expand access to comprehensive, coordinated, and person-centered care for people with Long COVID, particularly underserved, rural, vulnerable, and minority populations that are disproportionately impacted by the effects of Long COVID.
The grants are a first of their kind and are designed to expand access and care, develop, and implement new or improved care delivery models, foster best practices for Long COVID management, and support the primary care community in Long COVID education.
My Take:
By providing grants to existing Long COVID clinics, the government aims to support the development of new care models and best practices.
This is a drop in the bucket but it seems like there has been a large stall in federal funding for LC, this could mean more is coming.
SUMMARY:
Doctors with long covid are facing significant challenges and deserve more support from the government and the NHS.
Long covid has had a severe impact on the lives and careers of these doctors, with some being forced to sell their homes and facing financial destitution.
The lack of workplace protection, access to respiratory protective equipment, and appropriate medical care for doctors with long covid is concerning.
A survey conducted by the BMA found that nearly one in five doctors with long covid are no longer able to work, and many have lost income due to their condition.
My Take:
It is concerning to see the lack of workplace protection and access to necessary equipment for these doctors, considering their frontline role during the pandemic.
Research
DEFINITIONS:
Mechanistic pathways research: aims to understand the underlying causes and mechanisms of diseases.
Patient-centered and patient-partnered research: involves actively involving patients in the research process and integrating their perspectives and experiences into study design and implementation.
SUMMARY:
The NIH-funded RECOVER study is collecting clinical data on patients who experience a SARS-CoV-2 infection.
Patient-centered and patient-partnered research informs the balance between urgency and robust mechanistic research.
Intellectual partnerships with efforts like the RECOVER initiative enable learning from each other’s perspective.
Partnering with researchers helps us reframe the endless uncertainty to endless potential answers.
DEFINITIONS:
Immune-mediated inflammatory diseases (IMIDs): refers to a group of disorders characterized by dysfunction of the immune system leading to chronic inflammation and tissue damage.
Type 1 diabetes mellitus (T1DM): a chronic autoimmune disease characterized by the destruction of insulin-producing cells in the pancreas.
Inflammatory bowel disease (IBD): a group of chronic inflammatory disorders of the digestive tract, including Crohn's disease and ulcerative colitis.
Psoriasis: a chronic autoimmune skin condition characterized by the rapid buildup of skin cells, resulting in dry, itchy, and scaly patches.
SUMMARY:
SARS-CoV-2 infection was associated with a 22% relative increase in the incidence of immune-mediated inflammatory diseases (IMIDs).
The incidence of three specific IMIDs - type 1 diabetes mellitus, inflammatory bowel disease, and psoriasis - was significantly associated with SARS-CoV-2 infection.
These findings support the hypothesis that a subgroup of long COVID may be caused by immune-mediated inflammatory mechanisms.
DEFINITIONS:
Nervous system: The complex network of nerves and cells that transmit signals between different parts of the body.
SUMMARY:
SARS-CoV-2 can infect various cells in the central nervous system, leading to potential long-term effects and the emergence of neurodegenerative diseases.
SARS-CoV-2 can infect endothelial cells, neurons, astrocytes, and oligodendrocytes with consequences for the host. There are indications that infection of these central nervous system-resident cells may result in long term effects, including emergence of neurodegenerative diseases.
Understanding the immune response and diseases related to SARS-CoV-2 infection in the nervous system is crucial for developing therapeutic approaches.
DEFINITIONS:
ABO blood group system: The most important human blood group system consisting of carbohydrate antigens located at the surface of red blood cells (RBCs).
It includes blood types A, B, AB, and O.
SUMMARY:
The ABO blood group system is of utmost importance in genetic factors that play a role in the susceptibility to infectious diseases.
The association between ABO blood groups and SARS-CoV-2 infection or COVID-19 severity has been extensively studied.
ABO blood group has a strong association with susceptibility to infection but not with disease severity.
individuals with blood group A have an increased susceptibility to COVID-19 infection, while those with blood group O have a lower risk.
Studies on the association between ABO blood groups and long COVID are still lacking.
My Take:
While ABO blood group has a robust association with susceptibility to infection, it does not appear to have a clear association with disease severity.
Does anyone know why A has increased susceptibility and O vice versa?
DEFINITIONS:
Dysautonomia: refers to cardiovascular autonomic imbalance, resulting in various cardiovascular symptoms.
Heart rate variability (HRV): refers to the variation in time intervals between consecutive heartbeats, which can indicate autonomic imbalances in individuals.
SUMMARY:
Patients with Long COVID can experience a cardiovascular autonomic imbalance known as dysautonomia.
Autonomic imbalances in patients with Long COVID may result in lower heart rate variability, impaired vagal activity, and substantial sympathovagal imbalance.
HRV can indicate autonomic imbalances in individuals suffering from Long COVID, and measurement is a non-invasive and low-cost method for assessing cardiovascular autonomic modulation.
HRV monitoring results in better stratification in patients with Long COVID. HRV can be used to monitor Long COVID (symptomatic), post-COVID-19 (asymptomatic), and uncertain Long COVID (unclear) individual
HRV is the most appropriate tool for diagnosing patients with Long COVID who have cardiovascular autonomic dysfunction as it generates a quantitative score independent of cognitive function
My Take:
Measures of HRV can provide valuable insights into the autonomic imbalances in individuals with Long COVID and can be non-invasive and low-cost methods for assessing cardiovascular autonomic modulation.
Many devices can accurately measure HRV
DEFINITIONS:
Epstein-Barr virus (EBV): A herpesvirus that can cause infectious mononucleosis and can establish lifelong latent infection in the body.
SUMMARY:
Both myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) and long COVID (LC) share similarities in terms of immunological alterations, chronic viral infection, autoimmunity, inflammation, viral reactivation, and symptomatology.
Epstein-Barr virus (EBV) reactivation is observed in both ME/CFS and LC, suggesting a possible link between the two diseases.
Latency and recurrent EBV reactivation could lead to acquired immunodeficiency syndrome in genetically predisposed individuals with ME/CFS and immunosuppression in LC patients.
The presence of previous SARS-CoV-2 infection may contribute to the development of acquired EBV immunodeficiency in LC patients.
My Take:
I found this to be the most interesting read of the week!
The proposed model of latency and recurrent EBV reactivation leading to acquired immunodeficiency in ME/CFS and immunosuppression in LC provides a possible explanation for the chronic nature of these conditions.
DEFINITIONS:
Fibromyalgia (FM): an illness characterized by body-wide pain.
SUMMARY:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and fibromyalgia (FM) are considered distinct entities due to their overlapping neurologic symptoms.
A study used quantitative mass spectrometry-based proteomics to analyze cerebrospinal fluid (CSF) proteomes of ME/CFS patients with or without FM.
The study found no proteins in CSF that could distinguish between ME/CFS patients with or without FM, suggesting that ME/CFS and FM as currently defined are not distinct entities.
My Take:
This study challenges the idea that ME/CFS and FM are separate illnesses, as it found no distinguishable proteins between CSF samples of ME/CFS patients with or without FM.
These findings suggest that ME/CFS and FM may be part of the same illness spectrum and should be approached as a single entity for diagnosis and treatment purposes.
Wow - you were right about the EBV article. This is pretty huge.
“Patients with ME/CFS may present with insulin resistance, increased blood insulin levels, high waist circumference, high triglycerides, and hypocortisolism” - I am experiencing all of these things 3.5 years into LC (I’ve also been diagnosed with ME/CFS). My EBV reactivation numbers have been off the charts the whole time. My ID doc has me on daily valacyclovir and my endo has me on metformin for the pre-diabetes.
As for the newsletter name, it’s funny you should ask. I’m considering a rebrand myself that is broader than LC and ME/CFS, though I am getting a lot of new subscribers each week and I worry that a name change might make me harder to find. I think since so many with non-LC post-viral illnesses are hanging their hat on LC research answering their prayers, maybe we should both stick with our names for now.
I’d keep the name ‘Long Covid Weekly’ - it’s a great name, and you already do a good job of covering not just Long Covid but other post infection chronic illnesses