Source: The Sick Times
Back in early 2020, the news of the strange illness causing terrible pneumonias in China saddened me, but I believed I was safe in Canada. Within weeks, there was a reckoning: thousands were dying on my doorstep, too.
Directors of an independent living residence at the start of the pandemic asked me to become the residence’s COVID-19 advisor. They had no qualified medical staff, despite supporting elderly residents. Back in those early days, anyone with a medical qualification was commandeered to help in any way they could.
Confronted with the task of providing guidance to the nonmedical staff taking care of these residents, I decided to learn everything I could about the pandemic. At that time, about 1,000 papers were being published every month detailing research into every aspect of the coronavirus. Of course, I couldn’t read all of them, but I read as many as I could and built a breadth and depth of evidenced-based knowledge about SARS-CoV-2 and COVID-19. I wrote up the protocols and during my tenure as COVID-19 Advisor for this residence, we kept COVID out.
As a family physician seeing COVID-19 in my practice, I came to recognize that so many of my colleagues and patients had no idea how to keep themselves safe from the coronavirus, nor were they aware of its long-term risks. I saw the need to take action and effect change, which ultimately led me to becoming an advocate for Long COVID awareness.
I started the medical education company Kojala Medical, aiming to provide evidenced-based information about medical issues in a form patients could understand and reliably trust. I wanted a credible, trustworthy site to which I could refer my patients, colleagues, friends and family. We started with a focus on COVID-19 and have now expanded to Long COVID, with the site longcovidtheanswers.com.
I first learned about Long COVID in 2020 through publicity raised by the Body Politic COVID-19 support group, then became more alarmed as I read scientific articles about the disease.
Aside from the official death toll of over 7 million from COVID-19, Long COVID has emerged from the pandemic as the single biggest disaster to afflict humanity, yet very few people who are not sick with Long COVID are aware of it, want to know about it, believe in it, or even acknowledge that it’s happening. Sadly, many in the medical profession fall within that group of non and disbelievers.
This is bizarre, especially because of the impact of the disease. One recent review estimates more than 400 million global cases of Long COVID. I am furious that not enough is being done to alleviate this suffering. The injustice of yet another neglected and marginalized chronic illness that disproportionately affects women.
So, rather than sitting around waiting for ‘someone’ or ‘body’ to do something, I decided to act.
For me, medicine is fundamentally about aiding people to get as well as possible from any sickness they have — and even more importantly, preventing people from getting sick in the first place. In both of these regards, we are failing people with Long COVID dismally.
Long COVID is not the flu, it is a multisystem debilitating infection associated chronic condition. Developing Long COVID can be disabling and life-changing. Recovery remains low — and some manifestations like heart disease, dysautonomia, and myalgic encephalomyelitis (ME) may last a lifetime.
This is a terrifying situation to be in when, as a global community, we have chosen to act as though the pandemic is over and repeatedly expose ourselves to SARS-CoV-2, a grade 3 biohazard, with little to no protection.
As I read more and more research papers about Long COVID and looked at the inaction of global governments and my own profession, I feared that we were sleepwalking into a global mass disabling event unnecessarily, since we have many technologies available to prevent this.
Infection-associated chronic conditions do not have an established medical speciality, and are rarely taught in medical school. With the medical profession disengaged, people with Long COVID have been left to find answers for themselves.
My work aims to build on support groups, which have helped establish caring communities for people with Long COVID, but have also paved the way for us as scientists and medics to change the way we conduct research in a more patient-focused way. Nevertheless, they don’t entirely fulfill the need for evidence-based information about the disease in a readable format for nonmedical individuals.
I saw a huge need for a comprehensive website that would be of use to all people with Long COVID, their caregivers, the scientists researching the disease, and the multidisciplinary team of healthcare professionals that would be needed to rehabilitate them. Our organization believes that Long COVID The Answers meets those requirements.
There is also a pressing need to train medical professionals so that they will acknowledge Long COVID and feel confident about diagnosing and managing it. Inspired by an interview with Dr. Ric Arseneau, an expert in managing complex chronic diseases, my team and I created a podcast series: so that medical providers can receive continuing professional development/educational credits from watching this series.
The podcast series features a range of experts, including people with Long COVID, doctors, scientists, educators, and medical clinicians. Some of these experts also serve on our advisory board, overlooking and participating in the project.
Our site aims to raise awareness about the dangers of continuously exposing ourselves to a perilous virus with no thought of what it will cost us and our children.
This will mobilize the people of the world to demand that their leaders properly provide safe spaces for us all to prevent us from ever getting infected in the first place.
We need to mandate our governments to access all the mitigating technologies that we have in our roster, not only vaccination. The best way of managing Long COVID is to prevent people getting infected with SARS-CoV-2 in the first place!
We need national and international indoor clean air acts – to protect us from emerging pathogens.
For people with Long COVID, awareness will bring an educated and mobilized medical profession, governmental resources, financial and sociological support, and money for research — to facilitate treatments and, hopefully, a cure.
These are the main reasons why I jump out of bed in the morning with gusto, focus, and determination, and why I’ve poured all my money and my time into educating people about Long COVID.
Dr. Funmi Okunola is a British Family Physician who lives and works in Vancouver, Canada. She is the President and CEO of Kojala Medical, a digital medical education company behind COVID-19 The Answers and Long COVID The Answers.
