Solve M.E. Board Member and Person with Long Covid Cynthia Adinig Speaks At Covid-19 Memorial Event

The following speech was delivered by Solve M.E. Board Member and person with Long Covid, Cynthia Adinig, during a Covid-19 memorial event hosted by Rami’s Heart Memorial and COVID-19 Hope Quilt on March 5, 2022. 

First I want to thank Rami’s Heart Memorial & COVID-19 Hope Quilt for asking me to be here as a representative of the long covid community. It is truly an honor. Before I got sick I was a multitasking supermom and business owner.  I ran 2 businesses from home and volunteered in the community, while homeschooling my young son.

Mid -March 2020 my family and I got a very mild covid. Runny noses, a light sore throat, which meant we were denied access to a Covid test. Then in May 2020, I had my first long covid incident, of many that sent me to the Emergency Room. I took one bite of dinner. Immediately, my jaw felt tight, I couldn’t swallow, my heart raced, I felt dizzy. I was afraid I would faint or have a heart attack!

A few days later after eating a piece of fruit, my heart rate soared to over 160 and I experienced intermittent paralysis. I remember sobbing as my limp legs had to be dragged out of the car and into the ER.  A similar scenario kept repeating. Food after food. Until there was nothing left for me to eat and I became wheelchair bound. I knew I was dying. I started thinking about my funeral arrangements.

By September 2020 I began to experience a drop in oxygen to dangerous levels. Yet I was threatened with arrest by hospital staff for seeking care. 2021 was also filled with multiple ER trips.To some I appear well thanks to a heavy regimen of medications, but I still remain disabled.

There have been many lives lost to long covid. Good, hard working Americans. Which is why I am also asking the CDC to publicly report findings on the prevalence of Long COVID, including demographic data.

However, this isn’t a speech isn’t about despair. This is about hope and community.

In the summer of 2020 as I was looking for answers as to why I was sick, I discovered a community of people with long covid. It began as a Facebook group, but has become much more than that. Producing many well known long covid advocates such as, Amy Watson, Dr, Margot Gage, Liza Fisher, Natalie Lambert, Karyn Bishof, Miranda Erlanson, Dr Robi Tamargo and many more.

It was initially a community filled with mostly teachers, nurses and first responders from all over the country. With one thing in common. We got Covid and never got well.

We were not divided by skin color, age or class. There were no debates about red vs blue. Our condition was often not understood by our own families. So we became each other’s family. If one of us was in need, medically, or emotionally we would be each other’s support. Sadly, financial hurdles were often the reason why longhaulers would “ tough it out at home”. Causing permanent organ damage to some.  Which is why I am calling for state and federal governments to expedite financial assistance programs for those with long covid.

Another community of people, those who have Myalgic encephalomyelitis, often called MECFS, sickened years ago from other viruses such as mono, also reached out to many of us with long covid. Nearly half of those with long covid qualify to be diagnosed with MECFS. This community gave us helpful tips in things like applying for SSI, and more importantly, gave us hope that we would wake up to see the next day.

So while it is tempting to believe, in this polarized time, that fear, poverty and desperation would only cause Americans to turn against each other. Divided by labels and zip codes. I can proudly say that I know we as Americans can come together for one another. That instead of fighting each other, we can fight for each other. 

With covid deaths now at nearly a million, and long covid suspected to be at over 20 million, I am asking that our members of congress come together to address the policy proposals that longhaulers like myself have created, and to also make today the official COVID–19 Victims and Survivors Memorial Day. Thank you.

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