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  • Why create a website for your Long COVID experience and advocacy?
    I created this website in the Fall of 2020 after months of attempting to spread awareness globally about the long-term, serious effects of COVID-19, and after growing increasingly frustrated with how little the public, the government(s), and the medical establishment(s) were recognizing and supporting COVID-19 survivors and acknowledging the persistent reality of infection-initiated illnesses. I was the first COVID-19 survivor within mainstream Western media to publicly state that they were not getting better at the "2 week" recovery mark touted by the CDC in March 2020, and the first to discuss the medical gaslighting experienced as a COVID-19 patient, and although I did not coin the term "Long COVID", I did attempt to sound the warning bells of a serious but overlooked health crisis on March 26, 2020 (see the "media" tab for the first article), without fully understanding the seriousness nor the global magnitude of the situation at that time. I did this after advocating publicly across my social media accounts upon falling ill on March 10, 2020, one day before the WHO declared COVID-19 a global pandemic, sharing my physical and psychological experience with the virus every day from there-on-out, in an effort to help others "expectation set", which was a luxury that I and many early first-wave patients did not have. I sacrificed my health and at times stiffled my immense pains to help reduce the anxiety and worries of others at the start of the pandemic and throughout my acute fight, and after realizing that such stiffling was only further contributing to the social irresponsibility of others, began to advocate more in earnest in an effort to educate the public about the seriousness of COVID-19, beyond just the acute infection and beyond the fatal outcomes. I tried to educate in order to spare others from being in my shoes, knowing how serious of a condition my health was in at the hands of simply surviving COVID-19. I have continued to advocate on behalf of patients daily for over 18 months, creating educational graphics for sharing across social media, short but poignant videos of my experience, and supporting numerous mainstream media article (and research studies) relating to COVID-19, Long COVID, and post-viral Illness. I created this website to (1) educate the skeptical public, ignorant to the breadth and severity of the Long COVID fight, through time-stamped social media and mainstream media shares detailing how REAL and chronic this battle is, (2) to help other patients read through my experience, find resources and the Body Politic Covid-19 patient community, and know that they are not alone, and (3) to support future post-viral illness advocacy, research and support, as Long COVID is not the first and will not be the last debilitating, societally-impacting chronic trajectory of a virus. I made this to educate, to help get ahead of the ridiculous misinformation circulating around Long COVID (newsflash: my visual impairment and immunocompromised state would like to inform you that this virus is NOT psychosomatic, despite what your prejudices and internalized ableism may say), and to help drive forward innovation surrounding the eventual CURE of the handful of viruses that are known to trigger various post-viral illnesses, and to save others from being in many, and many millions of others shoes. To save you from the heaviness and hell that is infection-initiated illness.
  • Did you have any conditions before you contracted COVID-19? How old are you?
    No. I had no pre-existing conditions that were viewed as "high risk" for COVID-19, and my only health compliant prior to COVID-19 was severe chronic primary insomnia (since age 12) and a wheat allergy. My immune system was in excellent condition and my blood tests and check-ups pre-COVID-19 were all viewed as exemplary for health. I first fell ill with COVID-19 on March 10, 2020 when I was 32 years old, and upon writing this paragraph on August 19, 2021, I am 33 years old and still extremely unwell physically.
  • Did you have a positive COVID-19 test? Did you have a positive antibody test?
    Yes and no. Although I was originally denied a COVID-19 PCR test on March 12, 2020 by a Massachusetts General Hospital (MGH) doctor who claimed that my symptoms were all due to my vaping of medicinal cannabis for insomnia, and that *if* I did have COVID-19 my case would be mild and that I would have no adverse outcomes, I fought my way to a second opinion and received a COVID-19 test on March 17, 2020. The 5 days in between my attempt at receiving a test and actually receiving a test saw a rapid decline in my respiratory abilities, neurological health and gastrointestinal health, and although I was initially guilted about "taking a test away from somebody that might need it" upon my PCR on March 17, I did in fact test positive for the virus at that time. I did not, however, ever test positive for COVID-19 antibodies, which is now known as a commonality for Long COVID patients, although the science is still forthcoming. Additionally, it's extremely important to understand that testing access, the unreliability of PCR tests early in the pandemic (high rates of false negatives), and the timining in which a person receives a PCR test (false negatives are more likely after 7 days of symptoms) are all factors that should NOT make this question one that's pertinent to be asked. Antibody tests fall into the same category with many not following a standard sensitivity threshold, and as there is much more to immunity than simply the detection of antibodies.
  • Have you received abuse for being an early Long COVID advocate?
    YES. Very much so. As a publicly vulnerable patient early-on, sharing my daily experience and intimate medical details across social media and via mainstream media articles - all done at the sacrifice to my health and personal life in order to educate and prevent others from being in my shoes -, I received daily DMs, comments and emails from COVID-deniers and those simply in denial about the reality of chronic invisible illnesses, such as post-viral illness. I was repeatedly called an "attention whore", "liar", "government mouthpiece", "actress", and "exaggerator", despite showing my abysmal medical test results, repeated ER and clinic visits, and talking openly about the challenges faced from a mental health perspective regarding surviving acute COVID-19 and battling Long COVID, and was told to "kill myself" more times than I can say. I received abuse in comments on articles written about my case - articles that I supported while exceedingly ill and reserving all of my lacking energy for (or 'spoons', if you're familiar with Spoon Theory) - and I even received abuse from medical professionals who have navigated their professional careers without any knowledge of or willingness to educate themselves about the reality (and lengthy history!) of post-viral illness. Despite the abuse I persist because, once again, this crisis is much larger than myself or my emotions: I advocate even for the people that have abused me throughout these past 18+ months, as I wouldn't wish this illness (or any post-viral illness) on anyone.
  • How would you describe your COVID-19 and Long COVID experience thus far?
    My case has been extremely severe in many aspects, and has affected over 9 body systems. My acute phase was marked by extremely severe gastrointestinal and neurological symptoms (at the time, in the spring 2020, both body systems were dismissed as being connected to COVID-19), in addition to severe respiratory symptoms and moderate cardiovascular, muscular, urinary, reproductive and dermatological symptoms, and my chronic phase has been defined by a series of exceedingly severe viral reactivations and neurological complications. As of today, August 19, 2021, I now have multiple chronic illness diagnoses, visual impairment in my left eye, reasonable accommodations at work, a new label of "immunocompromised", and a new-onset reactivation of Epstein-Barr Virus (EBV), Herpes Zoster Ophthalmicus, Zoster Sine Herpete, Human Herpesvirus 6 (HHV-6), an inability to recover from Mycoplasma Pneumonia, and an inability to fend off viruses due to depleted Natural Killer (NK) cells. My once perfectly healthy self is now within the very group most vulnerable to the virus that caused my new health vulnerabilities: the vicious cycle of being a Long Hauler because of and during this pandemic, and in a society that cares little about the chronically ill or immunocompromised.
  • Other than the media, where have you focused your advocacy efforts?"
    My advocacy and the advocacy of my peers has led myself and my Body Politic and Patient-Led Research Collaborative peers to meet with the WHO, NIH, CDC, AAMPR, HHS, OPM, and other public health agencies and organizations both within the United States and internationally, in an effort to enact positive change and help for Long COVID and post-viral illness patients globally. I personally support various NIH panels on Long COVID as a patient expert, and was honored to support the December 4, 2020 NIH Conference on Long COVID, which in turn resulted in $1.15B being awarded to the NIH for Long COVID research. Our collective advocay has enabled President Biden to declare Long COVID as a disability recognized under the Americans with Disabilities Act (ADA), and it has also helped second and third wave patients have a symptom list, diagnosis/name, and support for their Long COVID battles, which was a personal hope of mine as a first wave patient deprived of those necessities early on. I am also working on a personal (non-Body Politic) level with various US agencies to initiate educational sessions and trainings on Long COVID and post-viral illness as it relates to the workforce, and I am consistently looking for ways to inform governments about how best to be an entity that's truly FOR the people, BY the people, as millions of post-viral illness patients need support, recognition and research...and now. Additionally, at the end of the day this virus affects people, and it’s people that we can relate to and learn from. It’s people living this reality that will help to better our global understanding of this virus and its many facets from day 1 of symptoms to month 19 of symptoms, and surely well beyond. Real personal stories trigger real personal accountability and awareness, and that is vital to being holistically responsible in how we approach the topic of “recovery” as both a collective and as individuals. We cannot talk about a "return to normal" without the advocacy work of myself and my peers: there will be no return to any form of "normal" for an estimated 40,000,000 to 120,000,000 million Long COVID patients globally. Let's not make the largest mistake in modern history by overlooking the lives and needs of those who need our collective brilliance and support most.
  • What's your main hope regarding the future results of your advocacy?
    That we (1) recognize, research, support and treat ALL post-viral illnesses, understanding that the "psychosomatic" label is one of igorance and a lack of truly understanding cellular-level medicine (and REALITY), and that (2) we medically innovate and push ourselves to create cellular-level tests for the diagnosis and monitoring of post-viral illness, and strive to cure - not simply treat - the viruses that are known triggers for post-viral illness. While I understand that historically we have been unsuccessful in innovating cures for viruses due to biological factors in addition to funding/resource factors, we are collectively at a stage that we cannot ignore this persistent and worsening problem any longer, and especially as Long COVID has created the largest mass disabling event in modern history. My thoughts are the following: The biological factor is one that we can - theoretically, at this stage in our evolution and advancements - begin to innovate around. The biological argument is that the difficulty in curing viruses is that they’re technically not alive: they depend on the "machinery" within our cells to reproduce. This makes it so that a drug that targets any part of the viral, parasitic cycle could further harm the patient. Antivirals need to attack the illness and not the person, which is where cellular-level innovation must happen. Brilliant minds are needed to tackle this, as we surely aren’t at the ceiling of our medical knowledge. And while viruses are also more distinct from one another than bacteria (why antibiotics are more of a thing than antivirals), and require individual cures, money holds the innovation back. It’s no secret that insurance companies profit off of chronic illness. But drug companies? They’re culprits. Developing drugs for viruses requires time and resources/money, and little is made in curing many distinct viruses, especially ones that don’t have high fatality rates. But this is where we’re missing the big picture, overlooking post-viral illness and how rampant and debilitating they are, both personally and societally. Long COVID is waking us up but we can’t miss the call. Viruses such as the Herpesvirus family triggers numerous post-viral illnesses, and at a certain point? We must attempt to advance our viral and chronic illness research, understanding and treatment. Biology hurdles can be learned through; money hurdles can be rectified by better utilizing the global wealth. So in short, I advocate because we’re smarter than this: all of this. Let’s not let viruses outsmart humanity any longer: lives, health, the economy and our future depend upon it. Let’s not let our ableism and capitalism obsessions kill or disable us all in time.
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