How COVID-19 Brought Medical Gaslighting to the Forefront and Made Invisible Illness Visible: Lessons from the BIPOC Long COVID Study

Back in March 2020 I became ill with COVID-19. It almost killed me. My journey with the illness is documented publicly and I am featured in New York Times, USA Today, Washington Post and People Magazine to name a few publications. Health Magazine named me one of seven African American women unsung heroes of COVID-19. Last year in 2021 I was invited to address President Biden’s COVID-19 Task Force Team. In the medical community, there is a pattern of treating people differently based on their gender, sexual orientation, age and disability status. COVID-19 shed light on the need for the medical community to shift to a modern outlook in the treatment of patients with invisible illnesses. In this chapter, I will discuss what is long COVID, findings from the BIPOC Long COVID Study, and how long COVID made invisible illnesses such as chronic fatigue syndrome, fibromyalgia, chronic Lyme disease and lupus visible. Recommendations are given on long COVID recovery

The impact of virtual learning on health literacy: lessons from a virtual townhall held by the Lamar University Recovery and Resilience Academy

Background: The COVID-19 pandemic shut down the entire world. This caused universities and addiction recovery programs to get creative on how to reach community needs. Many professors found themselves teaching online for the first time. Apps for mental health and addiction recovery programs grew exponentially. Information on how adequate virtual programs perform are mixed. We investigate the extent to which a virtual program can increase health literacy. To accomplish this, the professors of the sociology program launched the Recovery and Resilience Academy (RnR Academy). The aim of RnR Academy is to serve as an outreach and educational center for the people of Southeast Texas who want to learn how to be better prepared to overcome adversity. Methods: In March 2022, the Mayor of Beaumont, TX along with professors from the sociology program at Lamar University led a virtual townhall. The aim of the townhall was to teach the community about invisible illnesses. Invisible illnesses are related to sicknesses that are not visible to the human eye. For example, chronic pain, mental health and addictions are some of the many illnesses that fall under the invisible illness category. In the townhall held by RnR Academy, health topics included mental health, chronic Lyme disease, long COVID, and health related problems from living in mold invested housing. The townhall was 100% virtual. Members of the local community were invited to complete a pre-test (n=48), following this they watched four 10-minute presentations, and after the presentations completed a post-test (n=33). Results: Results for all health indicators suggest that health literacy slightly increased. For example, results showed that before community members watched the presentations, only 77.1% had ever heard of long COVID. After watching the presentation, 100% report knowing that COVID-19 can last more than 1-year. Conclusions: Preliminary findings suggest that even though people are historically accustomed to face-to-face instruction, virtual learning can produce positive outcomes. Rural communities and other hard to reach populations that cannot attend face-to-face meetings might benefit from virtual health education programs. Given that many local programs in rural communities have small numbers or limited access to larger refined programs, launching a virtual education program could be a huge win for addiction recovery programs and initiatives aimed at reducing health disparities

An Exploratory Investigation of Government Air Monitoring Data after Hurricane Harvey

Southeast Texas is home to some of the largest refineries in the United States. During Hurricane Harvey, emergency shutdowns took place. In this exploratory investigation, we examine how government air monitors performed in measuring air quality in Beaumont, Texas during and in the months following Hurricane Harvey. Texas Commission on Environmental Quality (TCEQ) data from two active air monitors in Beaumont, Texas were analyzed during the year 2017&ndash;2018. Concentrations of sulfur dioxide (SO2), nitric oxide (NO), oxides of nitrogen (NOx), ozone, benzene, and hydrogen sulfide (H2S) were investigated. The number of hours and days no data were reported by air monitors were also investigated. Yearly maximum values (MAX, all in parts per billion (ppb)) in 2017 for SO2, NO, and NOx (53.7, 113.4, 134, respectively) and their respective standard deviations (SD: 1.3, 3.4, and 14) were higher as compared to 2018 (MAX, all in ppb and (SD) = 40.9, (1.4); 103.9, (3.3); 123.8, (14), respectively). The data capture rate for these chemicals were between 88 and 97% in both years. During the months following Hurricane Harvey (August&ndash;December 2017) there was an increase in most maximum values. The yearly averages for H2S were 0.68 ppb (SD 1.02) in 2017 and 0.53 ppb (SD 1.07) in 2018. Missing days were observed for both the H2S and NOx air monitors, with the highest number observed in 2017 (213 missing days) for the air monitor measuring H2S. We identified that residents of Beaumont, Texas are exposed daily to low-level concentrations of air pollutants. H2S is released each day at a level high enough to be smelled. Data capture rates for air monitors are not always above 90%. Improved air quality data and disaster preparations are needed in Beaumont, Texas.</div

Researching COVID to enhance recovery (RECOVER) pediatric study protocol: Rationale, objectives and design.

IMPORTANCE: The prevalence, pathophysiology, and long-term outcomes of COVID-19 (post-acute sequelae of SARS-CoV-2 [PASC] or Long COVID) in children and young adults remain unknown. Studies must address the urgent need to define PASC, its mechanisms, and potential treatment targets in children and young adults. OBSERVATIONS: We describe the protocol for the Pediatric Observational Cohort Study of the NIHs REsearching COVID to Enhance Recovery (RECOVER) Initiative. RECOVER-Pediatrics is an observational meta-cohort study of caregiver-child pairs (birth through 17 years) and young adults (18 through 25 years), recruited from more than 100 sites across the US. This report focuses on two of four cohorts that comprise RECOVER-Pediatrics: 1) a de novo RECOVER prospective cohort of children and young adults with and without previous or current infection; and 2) an extant cohort derived from the Adolescent Brain Cognitive Development (ABCD) study (n = 10,000). The de novo cohort incorporates three tiers of data collection: 1) remote baseline assessments (Tier 1, n = 6000); 2) longitudinal follow-up for up to 4 years (Tier 2, n = 6000); and 3) a subset of participants, primarily the most severely affected by PASC, who will undergo deep phenotyping to explore PASC pathophysiology (Tier 3, n = 600). Youth enrolled in the ABCD study participate in Tier 1. The pediatric protocol was developed as a collaborative partnership of investigators, patients, researchers, clinicians, community partners, and federal partners, intentionally promoting inclusivity and diversity. The protocol is adaptive to facilitate responses to emerging science. CONCLUSIONS AND RELEVANCE: RECOVER-Pediatrics seeks to characterize the clinical course, underlying mechanisms, and long-term effects of PASC from birth through 25 years old. RECOVER-Pediatrics is designed to elucidate the epidemiology, four-year clinical course, and sociodemographic correlates of pediatric PASC. The data and biosamples will allow examination of mechanistic hypotheses and biomarkers, thus providing insights into potential therapeutic interventions. CLINICAL TRIALS.GOV IDENTIFIER: Clinical Trial Registration: http://www.clinicaltrials.gov. Unique identifier: NCT05172011

Researching COVID to enhance recovery (RECOVER) pediatric study protocol: Rationale, objectives and design

Importance: SARS-CoV-2 infection can result in ongoing, relapsing, or new symptoms or other health effects after the acute phase of infection; termed post-acute sequelae of SARS-CoV-2 infection (PASC), or long COVID. The characteristics, prevalence, trajectory and mechanisms of PASC are ill-defined. The objectives of the Researching COVID to Enhance Recovery (RECOVER) Multi-site Observational Study of PASC in Adults (RECOVER-Adult) are to: (1) characterize PASC prevalence; (2) characterize the symptoms, organ dysfunction, natural history, and distinct phenotypes of PASC; (3) identify demographic, social and clinical risk factors for PASC onset and recovery; and (4) define the biological mechanisms underlying PASC pathogenesis. Methods: RECOVER-Adult is a combined prospective/retrospective cohort currently planned to enroll 14,880 adults aged ≥18 years. Eligible participants either must meet WHO criteria for suspected, probable, or confirmed infection; or must have evidence of no prior infection. Recruitment occurs at 86 sites in 33 U.S. states, Washington, DC and Puerto Rico, via facility- and community-based outreach. Participants complete quarterly questionnaires about symptoms, social determinants, vaccination status, and interim SARS-CoV-2 infections. In addition, participants contribute biospecimens and undergo physical and laboratory examinations at approximately 0, 90 and 180 days from infection or negative test date, and yearly thereafter. Some participants undergo additional testing based on specific criteria or random sampling. Patient representatives provide input on all study processes. The primary study outcome is onset of PASC, measured by signs and symptoms. A paradigm for identifying PASC cases will be defined and updated using supervised and unsupervised learning approaches with cross-validation. Logistic regression and proportional hazards regression will be conducted to investigate associations between risk factors, onset, and resolution of PASC symptoms. Discussion: RECOVER-Adult is the first national, prospective, longitudinal cohort of PASC among US adults. Results of this study are intended to inform public health, spur clinical trials, and expand treatment options

Researching COVID to enhance recovery (RECOVER) pediatric study protocol: Rationale, objectives and design.

ImportanceThe prevalence, pathophysiology, and long-term outcomes of COVID-19 (post-acute sequelae of SARS-CoV-2 [PASC] or "Long COVID") in children and young adults remain unknown. Studies must address the urgent need to define PASC, its mechanisms, and potential treatment targets in children and young adults.ObservationsWe describe the protocol for the Pediatric Observational Cohort Study of the NIH's REsearching COVID to Enhance Recovery (RECOVER) Initiative. RECOVER-Pediatrics is an observational meta-cohort study of caregiver-child pairs (birth through 17 years) and young adults (18 through 25 years), recruited from more than 100 sites across the US. This report focuses on two of four cohorts that comprise RECOVER-Pediatrics: 1) a de novo RECOVER prospective cohort of children and young adults with and without previous or current infection; and 2) an extant cohort derived from the Adolescent Brain Cognitive Development (ABCD) study (n = 10,000). The de novo cohort incorporates three tiers of data collection: 1) remote baseline assessments (Tier 1, n = 6000); 2) longitudinal follow-up for up to 4 years (Tier 2, n = 6000); and 3) a subset of participants, primarily the most severely affected by PASC, who will undergo deep phenotyping to explore PASC pathophysiology (Tier 3, n = 600). Youth enrolled in the ABCD study participate in Tier 1. The pediatric protocol was developed as a collaborative partnership of investigators, patients, researchers, clinicians, community partners, and federal partners, intentionally promoting inclusivity and diversity. The protocol is adaptive to facilitate responses to emerging science.Conclusions and relevanceRECOVER-Pediatrics seeks to characterize the clinical course, underlying mechanisms, and long-term effects of PASC from birth through 25 years old. RECOVER-Pediatrics is designed to elucidate the epidemiology, four-year clinical course, and sociodemographic correlates of pediatric PASC. The data and biosamples will allow examination of mechanistic hypotheses and biomarkers, thus providing insights into potential therapeutic interventions.Clinical trials.gov identifierClinical Trial Registration: http://www.clinicaltrials.gov. Unique identifier: NCT05172011