Here is the cleaned up transcript of what Devin Russell of the Long COVID Foundation said during session 1 of the roundtable.

His Introduction (7:40):
“Hello Mr. Secretary. Thank you for having me. It’s an honor to be here with you all. My name is Devin Russell, I’m a co-founder of the Long COVID Foundation. Thank you for affording me the liberty to wear my mask. I think once I explain my history here you might understand why I would wear one. First I want to hand out a one pager on some of the Long COVID Community needs. I’ve had Long COVID starting in March of 2020. I’ve had it for five and half years now. I did not take the COVID Vaccine. I alone have had 170+ symptoms, some very severe, Guillain-Barre, blood clotting, heart issues, brain dysfunction, and even delirium at a time because my brain was so inflamed, which it still is inflamed, but not to that level. But it’s still a problem for me. I was near death at time and that’s not a hyperbole, I thought I was going to die. Prior to I had Chronic Lyme for 11 years which I recovered from and I managed a chronic illness centric clinic for four years. So based on that experience I can tell you Long COVID is a unique kind of hell. This is an urgent crisis that needs action now, as I’m sure you know. People are suffering and even dying, and a lot are holding on by a thread. So some of the things we need, of which there are many, but well-run common sense trials, biomarkers and test, and development of antivirals and other drugs because we have no tests, no biomarkers, and no treatments right now approved. So I look forward to discussing this in more detail today and thank you.”

Later In The Meeting (48:30): 
“Yes, I just didn’t want to lose track of the virus because the virus persists and people get reinfected as well and that’s a big problem for people with Long COVID. I know we want to characterize everything, but when I had Chronic Lyme my Chronic Lyme symptoms didn’t present like somebody else’s but we still had the same underlying problem, which was Borrelia was chronic, so I just want to be cautious about putting everybody into groups when the main underlying problem may be the same thing, even though there are reactivated pathogens and damage and other things going on, the virus itself, included twitch the spike … I think we need to keep a great focus on that because Lyme is the great imitator and I think Long COVID is the greater imitator.” 

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During and after the roundtable we were able to distribute materials to the government and health agency participants and the providers and researchers present. These included a one pager with some of the most important and practical things that are needed for the Long COVID Community and a larger six page document expanding upon the one pager and adding additional vital things needed. We also included a sheet on some alarming statistics to try to better illustrate the seriousness of the situation, with a graphics page to match. There is much we could have said at the roundtable and in the materials as there is so much that needs to be done to help those with Long COVID. In the coming months we will express more to those at HHS, such as the need to declare Long COVID a public health emergency, in order to facilitate moving things in a better direction for solutions for people with Long COVID. Some with Long COVID are going on six years now, what is happening right now is unsustainable and inhumane. 
 

Below you can find the materials we included in our packet.