Hi everyone,
In this edition, we delve into the failures of the US healthcare system in supporting Covid patients, the exorbitant cost of Paxlovid, the pursuit of compensation for long Covid, the potential benefits of probiotics, the association between handgrip strength and functional outcomes in Long Covid patients, and much more.
In case you missed the Senate Committee hearing on long Covid, you can find excellent coverage here, on a relatively new media site dedicated to Long Covid, ME and infection-associated chronic illnesses. It’s called The Sick Times. Check it out for all things Long Covid!
Also, wanted to highlight that I think I found the perfect candidate for the donations that people have been pledging to the newsletter! It is called WE & ME it is an Austrian Non-Profit focused on Long Covid and ME Research. I had an opportunity to chat with their COO this week, and learned they are hard at work connecting researchers across the world. However, before I proceed any further, I would like to see if anyone here has any thoughts!
Media
Article: Five Bold Predictions for Long Covid in 2024
SUMMARY:
With a number of large-scale clinical trials underway and researchers on the hunt for new therapies, long COVID scientists are hopeful that this is the year patients — and doctors who care for them — will finally see improvements in treating their symptoms.
Researchers identified four clinical phenotypes: Chronic fatigue-like syndrome, headache, and memory loss; respiratory syndrome, which includes cough and difficulty breathing; chronic pain; and neurosensorial syndrome, which causes an altered sense of taste and smell.
There is also promising research on the use of monoclonal antibodies, the antiviral Paxlovid, anti-inflammatory medications like metformin, and selective serotonin reuptake inhibitors (SSRIs) for the management of long COVID symptoms.
Article: What would it mean for scientists to listen to patients?: The New Yorker
SUMMARY:
The “Listen" study is an ambitious, patient-centered research effort led by Yale scientists to understand long COVID. It engages patients through extensive surveys, data access, biosamples, and virtual "town halls."
Goals are to better characterize post-viral illnesses, identify subtypes and biomarkers, and conduct clinical trials like their Paxlovid study.
The collaborative approach aims to bridge historical divides between patients and medical institutions over contested illnesses. But it brings both promises and challenges in balancing scientific norms and patient advocacy.
Ultimately, Listen seeks to demonstrate a new, more democratic model of clinical research that deeply engages patients. But transforming entrenched scientific culture is filled with both potential and uncertainty.
My Take:
This is an extremely important study that everyone should be paying attention to.
SUMMARY:
A group of doctors with long Covid are preparing to launch a class action for compensation after contracting SARS-CoV-2 at work.
Long Covid Doctors for Action (LCD4A) has engaged the law firm Bond Turner to bring claims for physical injuries and financial losses sustained by frontline workers who were not properly protected at work.
The ultimate aim is to achieve "legal accountability and justice for those injured," according to Sara Stanger, the director and head of clinical negligence and serious injury claims at Bond Turner.
LCD4A and Bond Turner have called for long Covid to be recognized as an occupational disease and for healthcare workers to be adequately protected from airborne viruses at work.
My Take:
This legal action could also contribute to improved protections and safety measures for healthcare workers in the future.
Article: Are Probiotics Effective Against COVID-19?
DEFINITIONS:
Probiotics: live microorganisms that confer health benefits to the host when administered in adequate amounts.
SUMMARY:
Gastrointestinal symptoms are relatively common in individuals with COVID-19, and the gut microbiota of COVID-19 patients is altered compared to healthy individuals.
Probiotics may improve symptoms of COVID-19, reduce disease duration, and improve long COVID symptoms, but clinical evidence is limited.
More research is needed to determine the effectiveness of probiotics in preventing and treating COVID-19.
Research
DEFINITIONS:
Dynapenia: the loss of muscle strength and power production that is not caused by neurological or muscular diseases.
Hand-grip strength (HGS): a measure of the maximum force applied by the hand muscles during grip.
SUMMARY:
The study aimed to identify the distribution and possible associations of dynapenia with functional assessments in patients with long COVID.
Dynapenia was defined as hand-grip strength (HGS) below certain cutoff values.
About 22% of the participants were dynapenic, and they showed lower muscle mass, worse lung function, and reduced exercise capacity compared to non-dynapenic participants.
Patients with dynapenia had higher rates of intensive care unit admission and invasive mechanical ventilation during hospitalization.
My Take:
I found this to be really interesting!
Dynapenic individuals had lower muscle mass, impaired lung function, decreased respiratory muscle strength, and reduced exercise capacity.
The findings suggest that hand-grip strength assessment could serve as a simple and cost-effective tool to identify functional impairments and guide rehabilitation strategies in long COVID patients.
SUMMARY:
Primarily a respiratory infection, numerous patients infected with SARS-CoV-2 present with neurologic symptoms, some continuing long after viral clearance as a persistent symptomatic phase termed “long COVID.”
The study hypothesized that perturbations in the aged immune response predispose elderly individuals to severe coronavirus infection and post-infectious sequelae.
Using a murine (mouse) model of respiratory coronavirus, mouse hepatitis virus strain A59 (MHV-A59), study authors found that aging increased clinical illness and lethality to MHV infection, with aged animals harboring increased virus in the brain during acute infection.
Aged animals demonstrated spatial learning impairment following MHV infection, which correlated with increased neuronal cell death and reduced neuronal regeneration in aged hippocampus.
My Take:
The findings suggest that immune cell dysfunction in the brain, specifically CD8+ T cells, contribute to post-infectious cognitive dysfunction in aged individuals.
SUMMARY:
During acute infection, the Delta variant replicated in lung and brain tissues, causing weight loss, neuroinflammation, and mortality in some mice.
22% of infected mice survived past 4 weeks (considered the post-acute phase).
Surviving mice showed viral clearance but persistent abnormalities in behavior, including neuropsychiatric symptoms and motor dysfunction that lasted for months.
Transcriptome analysis of brains revealed persisting activation of immune pathways related to complement, phagocytosis, and antibodies up to 4 months post-infection. This aligns with the neurological symptoms observed.
Minimal activation of microglia was seen post-acute infection, suggesting infiltrating peripheral immune factors, rather than brain-resident cells, drive ongoing dysfunction.
Surviving mice maintained potent T cell and antibody responses against SARS-CoV-2 for months post-infection.
Several genes downregulated in brains of infected mice are linked to cognitive/memory impairment and neuronal injury.
Article: IJMS | Free Full-Text | The Microbiota in Long COVID
DEFINITIONS:
Microbiota: the set of ecological communities of microorganisms present inside and on the surface of the human body.
SUMMARY:
Multiple studies show gut microbiota alterations in long COVID patients, suggesting possible links between dysbiosis and susceptibility/severity. However, more research is needed on microbiota changes over time.
One study found changes in oral microbiota could induce inflammation involved in long COVID symptoms.
SARS-CoV-2 variants and microbiota changes may be connected regarding influence on long COVID symptoms. Many areas like virome, mycobiome, and metabolome still need more investigation.
Evidence suggests microbiota could play an important role in long COVID pathogenesis. Further research to elucidate mechanisms could open doors for therapies like probiotics and microbiota manipulation.
SUMMARY:
This study investigated whether post-acute nervous system injury markers are associated with depressive symptoms, anxiety and cognitive deficits and the cognitive items of the Patient Symptom Questionnaire (C-PSQ). It also investigated whether the severity of acute COVID-19 illness is associated with raised levels of nervous system injury markers.
The study found no evidence that post-acute nervous system injury biomarkers associate with cognitive and neuropsychiatric symptoms in the post-acute phase of severe COVID illness after correcting for multiple comparisons.
Study authors state that their results provide evidence from the largest sample size to date that post-acute neuropsychiatric symptoms (in terms of depression, anxiety and cognitive deficits measured by PHQ-9, GAD-7, MoCA and C-PSQ) are not the product of ongoing neural injury.
My Take (Amy):
Of note, the study was limited to individuals with severe COVID illness who required hospitalization, and no ambulatory patients, who have also reported long-term neuropsychiatric symptoms. It also only looked at peripheral nervous system markers.
DEFINITIONS:
Oral manifestations: Symptoms affecting the mouth and oral cavity.
SUMMARY:
In total, 78% of respondents reported one or more oral conditions associated with COVID-19.
Changes in the sense of taste and/or smell (58%), dry mouth (48.1%) and mouth sores (45.7%) were frequently reported.
Healthcare professionals have observed oral manifestations in individuals diagnosed with long COVID.
Inadequate access to NHS dentistry is deterring patients worried about their oral symptoms and the limited oral knowledge of healthcare professionals affects their ability to manage patients.
My Take:
This is a pretty underrepresented research area within the LC community!
Article: Frontiers | A survey on the role of artificial intelligence in managing Long COVID
SUMMARY:
In recentyears, several techniques of artificial intelligence have been applied to data from COVID-19 to analyze Long COVID patients.
Artificial intelligence techniques have been utilized to assist doctors in analyzing data from Long COVID patients and alleviate the strain on care and rehabilitation facilities.
The study explores the impact of machine learning methodologies applied to analyze Long COVID syndrome, from clinical presentation through diagnosis.
It critically compares the various approaches and outlines the work that has to be done to create a robust artificial intelligence approach for efficient diagnosis and treatment of Long COVID.
DEFINITIONS:
Von Willebrand Factor (VWF): Protein produced by endothelium involved in blood clotting. High levels indicate endothelial inflammation/dysfunction.
Factor VIII: Clotting factor carried by VWF. Also indicates endothelial damage when elevated.
D-dimer: Breakdown product indicating abnormal blood clotting when elevated.
SUMMARY:
Up to 60% of COVID-19 patients develop chronic PASC/Long COVID symptoms from persistent inflammation.
Endothelial inflammation may drive Long COVID coagulopathies and thrombotic events.
10 gynecological PASC/Long COVID patients showed consistently elevated VWF and Factor VIII versus controls, indicating enduring endothelial dysfunction.
VWF/Factor VIII remained elevated for at least 2 years alongside persistent Long COVID symptoms in the studied subgroup.
D-dimer levels were not significantly different between groups.
Abnormal VWF/Factor VIII levels represent potential biomarkers of chronic inflammation in Long COVID patients.
My Take:
This is something that is fairly similar to what has been highlighted in prior newsletters!
DEFINITIONS:
PIMS-TS (pediatric inflammatory multisystem syndrome temporally associated with SARS-CoV-2): a condition in children characterized by inflammation in multiple organ systems, occurring after a recent SARS-CoV-2 infection.
MIS-C (Multisystem Inflammatory Syndrome in Children): a syndrome associated with COVID-19 that affects multiple organs and presents with fever, inflammation, and organ dysfunction.
SUMMARY:
This study examines the use of immunomodulatory therapy in children with pediatric inflammatory multisystem syndrome temporally associated with SARS-CoV-2 (PIMS-TS, MIS-C).
The study is a randomized, controlled, open-label, platform trial called RECOVERY Collaborative Group.
The trial includes a large number of participants and aims to determine the effectiveness of different immunomodulatory therapies in treating PIMS-TS/MIS-C.
The results of this trial will provide important insights into the management of PIMS-TS/MIS-C in children.
Again, a very interesting newsletter! I usually click on most of the links, so thanks so much for the time you spent on producing it.
We&ME looks like it may be a good recipient. They are fairly new so limited info on their approach. I personally would want to make sure that their research carefully stratified patients. ME/CFS & LongCovid are both umbrella criteria. It is important to compare apples to apples and not apples to fruit. I write about that here https://colleensteckelmeiccinfo.substack.com/p/mecfs-is-an-umbrella-term
Polybio have shown signs they understand importance of stratifying with use of the International Consensus Criteria for ME in their research.