Yesterday I spoke at the STAT Summit, supporting the sole session relating to #LongCovid. I was invited as the first US patient to discuss - in mainstream media - the lingering symptoms and medical gaslighting of Long COVID (LC) on 3/26/20, and as a #LongHauler on 20 months post-acute infection.
While the session was short (they range from 5 to 30 mins, so I feel fortunate with the 20 mins allocated), I did the best that I could to provide an ‘elevator pitch’ of this illness and my fight.
Was there data and experiences left unsaid? Yes. Did I misspeak and nervous nod? A bit. Did I get a chance to discuss LC in children, breakthrough cases resulting in LC, the even more difficult fight faced by marginalized patients, autoimmune and viral reactivations and persistence, or the dozens of other important topics relating to our fight? No, but if given an hour then each topic above - and more - would’ve received coverage.
But despite wishing for more, I’m very grateful that STAT brought LC to the table and for their understanding that it’s the patient voice that must be centered in such discussions.
Although my imposter syndrome set in seeing the speaker list include Dr. Fauci, the CEOs of Pfizer and Moderna and others, I can only say that what matters is not the perceived clout of the person, but the goodness of their heart, and their desire to make a positive impact.
And for the those still not understanding: if our healthcare system does not change course and research, create biomarkers and cellular-level diagnostic tools for, and seek to treat the ROOT cause of infection-initiated illnesses in the near term, then we will battle this beast for decades more. If it doesn’t physically affect you now - it does societally! -, then it will in time, of that health statistics show blatantly: even prior herpetic infections that remain dormant until reactivated (never cured…as of yet that is) like #EBV can result in cancer and serious health issues later in life.
If billionaires can devote resources to space tourism, then we can devote resources to innovating around viral persistence and the mechanisms behind infection-initiated illness within our bodies. #noexcuses