Submitted by Stephanie Paulmeno, Greenwich Health Dept, Submitted by Dr. Stephanie Paulmeno, DNP, RN, NHA, CPH, CCM, CDP, Public Health Promotion Specialist
Ask Long-COVID sufferers what their most troublesome issues are and you are likely to get a long list of symptoms. The FDA sought these answers (April 2023) in a virtual public meeting intended to clarify what Long-COVID sufferers were experiencing, what medications, treatments and holistic approaches they had tried to restore their former health, and what, if anything helped. The FDA engaged in this public hearing as part of a patient-focused drug development exploration they were undertaking (Patients Living With Long COVID Offer Insight to FDA).
The range of symptoms presented to them by the men and women from different walks of life that were in the study was staggering. They included persistent and life-altering dizziness in people who had not previously had that. Brain fog was widely reported and varying degrees of intensity and life disruption were described. Shortness of breath, persistent fatigue and diminished stamina requiring life and work adjustments was common. The symptoms were often intense and the biological and mental impact was diverse and far-reaching. Many symptoms were painful, frustrating, and debilitating. The body-systems involved were inclusive and included gastrointestinal, endocrine, neurological, reproductive, excretory, and muscular-skeletal, as well as cardiovascular and respiratory. Sleep problems were frequently identified (4 in 10 Long-COVID sufferers); in Black people this was three times more likely to be reported as a Long-COVID symptom than it was in White people
(Many Long COVID Patients Have Sleep Problems: Study)
(Sleep Disturbance Severity and Correlates in Post-acute Sequelae of COVID-19 (PASC))
Sleep disturbances have a significant impact on health, one’s sense of well-being, the restoration of health, and our quality of life; to which anyone who has lost prolonged sleep can attest. Sleep disturbances were given the attention they warranted in this review. The Kaiser Family Foundation (2023) reported that 28% of people who had ever had COVID also had Long-COVID (Long COVID: What Do the Latest Data Show?)
So what is Long-COVID? The Centers for Disease Control and Prevention (CDC) described those afflicted with Long-COVID as having “a range of new or on-going symptoms that can last weeks or months after they are infected with the virus that causes COVID-19, and that can worsen with physical or mental activity.” The CDC provided these symptoms (Guidance on “Long COVID” as a Disability Under the ADA, Section 504, and Section 1557):
• Tiredness or fatigue
• Shortness of breath/Breathing difficulty
• Difficulty thinking or concentrating (Brain fog)
• Headaches
• Dizziness on standing
•Heart palpitations (fast beat/pounding)
• Chest pain
•Depression/Anxiety
• Fever
• Loss of taste or smell
• Cough
• Joint/muscle pain
• Damage to multiple organs including the heart, lungs, kidneys, skin, and brain
Generally a person with diagnosed COVID-19 recovers within weeks, but in others the symptoms can last for many weeks or months and possibly longer, even if the original infection was mild. These people became our Long-Haulers or people suffering with Long-COVID. Because symptoms of Long-COVID have been found to persist and adversely impact multiple aspects of health, quality of life, and productivity, the Offices of Civil Rights in the Department of Health and Human Services, and the Civil Rights Division of the Department of Justice enjoined to offer public guidance about how Long-COVID CAN BE an Americans With Disabilities Act (ADA) qualifying disability under Section 504. Their guidance applies only to Federal Civil Rights laws, and excludes eligibility guidance under Social Security programs. The above referenced Health & Human Services article is worth a read if you or a loved one is suffering from Long-COVID. It gives details about how Long-COVID can result in both a physical impairment affecting one or more body systems; how it can be the underlying cause of a mental impairment as a result of any mental or psychological disorder; and how it can substantially limit one or more major life activities. These are the criteria needing to be met, substantiated, and documented. It offers resource links for one to apply if they think they are entitled to be covered under the ADA.
A good takeaway is to know the symptoms of COVID-19 and Long-COVID, get checked and tested if you think you have been exposed or think you have COVID-19 symptoms. If your symptoms linger, remain in contact with your primary care provider for symptomatic and possibly systematic treatments bearing in mind that multiple body systems can be impacted. Take charge of your health, make informed decisions, and be your own healthcare advocate.