Speaker: Dr Steve Deeks and JD Davids
Moderators: Michael Louella
Thursday 24 February 2022
Dr Steve Deeks opened the #5 and last Session of Margarita/Breakfast Community Club by discussing the current state-of-the-art around the Post-Acute Sequelae of COVID-19 (PASC) more frequently known as Long COVID. COVID-19 spreads throughout the body anywhere the ACE2 receptor, the protein providing the entry point for the coronavirus, is expressed and is associated with systemic symptoms that generally resolve in a matter of one week.
However, we now know that COVID-19 might have long-term, persistent symptoms that generally emerge within three months from the infection, affect everyday functions, last for at least two months and may fluctuate over time. These symptoms include anxiety, depression, PTSD, trouble concentrating, fatigue, poor sleep, palpitations, chest pain, orthostasis/POTS, nausea or diarrhoea, poor appetite, weight loss, muscle aches, neuropathy, joint pain, chronic cough, shortness of breath, loss of taste or smell.
The lack of a standard Long Covid diagnosis and the fact that everybody experiences it differently further complicates its standard definition, making it more difficult to establish the frequency of its occurrence.
In terms of global occurrence, several studies suggested that some Long Covid symptoms are much more common in South Africa, that they wax and wane but generally tend to improve over time. Three things will affect the risk of Long Covid going forward: vaccination (vaccine up to week 12 after infection had an effect on the risk of Long Covid), treatment (though data on this is still lacking) and variants.
Dr Deeks suggests that the omicron variant might result in a much lower risk of developing Long Covid when compared to the earlier variants. People living with HIV who had COVID reported a higher level of inflammation. Assuming that the major pathway by which COVID causes Long Covid is in part through inflammation, it might be predicted that people who live with inflammatory conditions (e.g. HIV, obesity, diabetes) are more likely to develop Long COVID. To prevent Long Covid, it is therefore important that people living with HIV get vaccinated and are given treatment if they do have COVID.
JD Davids focused on what has been done on Long Covid so far and what the next action points should be. Long Covid can have the characteristics of a complex chronic disease, leading to complicated self-management requirements that need specialised and multidisciplinary care. Furthermore, Long Covid might become a relapse-remitting condition with socio-economic consequences, such as the inability to work. Several disparities and obstacles might be faced, from the access to the diagnoses to the fact that the condition is not taken seriously.
More advocacy and major engagement from industries is central to develop interventions and therapies for Long Covid. Community-led organisations should play an active role. For example, the Patient-led Research Collaborative is a self-organised group of Long Covid patients working on patient-led research on their experience. So far, through their research, they have documented clusters of how people are presenting Long Covid and have found that Long Covid tends to be more common among cisgender women than it is among cisgender men. They have also noticed an impact on the reproductive system, for instance people experiencing irregular periods, bleeding after menopause or incidences of erectile dysfunction.
Activists have prepared an open letter regarding the RECOVER initiative to study Long Covid, asking for a comprehensive and adequately resourced patient engagement structure.
Resources
Click here to watch the recording of the session!
More about the MBCs: https://www.eatg.org/events/margarita-breakfast-clubs-at-croi-2022/
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