Long COVID Advocate Shares Progress and Hope

by | Jun 3, 2022 | Awareness Day, BHC News, Fibromyalgia, Long COVID, ME/CFS


Long Hauler Advocate, Lisa O’Brien shared her message of progress and hope at the BHC Messages of Hope Awareness Event on May 11, 2022. The following is a transcript of her message.

Rob Ence: One of the opportunities we have as we go through the challenges particularly as we’ve experienced the pandemic is to meet individuals not only as patients but who are incredible advocates for a cause. Such persons Lisa O’Brien. Lisa is the founder of the Utah Long Haulers Group and a long COVID advocate. I’d like to turn the time over to her for a few minutes for a message.

Lisa O’Brien: Thank you Rob and thank you so much for giving me the opportunity to share my thoughts again at this important event. My name is Lisa O’Brien. Like Rob mentioned I run the Utah COVID-19 Long Haulers group. I started almost two years ago and we now have over 4,400 members who are dealing with the long-term effects of COVID and we’ve become a place for people to find resources to educate themselves and just know that they aren’t alone which comes with great comfort for anyone dealing with a chronic illness.

For those who don’t know my story, I got sick in March of 2020 the same week the country began to shut down. I had a mild case of COVID which would not have led anyone to predict the aftermath that would follow and by May my autonomic nervous system started to malfunction with erratic heart rates internal vibrations and body aches that I couldn’t escape from. Many nights I forced myself to stay awake because I couldn’t bear to go through what sleep would bring. Adrenaline rushes that would make my heart rate soar or brain zaps that woke me up every five minutes. Through that first year, I was mostly bed-bound and there were many scary nights where I seriously contemplated sleeping in my car in the ER parking lot because I no longer felt safe in my own body and I knew there was far more going on than the anxiety diagnosis that my doctors wanted to throw at me. I had never heard of ME/CFS, fibromyalgia, or any of the other post-spiral syndromes that many with long COVID are now ending up with and unfortunately for me neither had anyone else that I encountered. It took me a year to finally find a doctor who could properly diagnose me and I know that I’m super lucky in that way and I’m so fortunate that I’ve been able to work with the Bateman Horne Center. While I’ve improved greatly over the last couple of years I’ve never been the same as I was before I got COVID.

So much has happened in the last year in terms of recognition and research as we’ve continued to fight. Just in the last several months new legislation has been introduced asking for increased research funding education and better care that would benefit all of those dealing with similar post-viral conditions. I and fellow advocates continue to bring ME and related conditions to the forefront to make sure that your voices are being heard because we understand the advantages that we have in what has already been learned about ME and the value that we will all gain from the answers that we have yet to learn from long COVID.

To end I want to express my continued gratitude today to the ME, FM, and chronic illness communities. Thank you for your insights that have helped so many of us adjust to our new realities and while we still don’t have all the answers what I do know is this. COVID really has created incredible opportunities. Opportunities that researchers could only ever dream of. Opportunities that are going to allow us to utilize what has already been learned and use COVID as a catalyst to fill in the blanks to expand our knowledge and to find the answers that have eluded ME and other chronic illness communities for way too long. There’s far more hope and greater strength when we stand together and I look forward to our continued partnerships. Thank you.

Click here to watch the video of her message.

Click here to watch the Messages of Hope Awareness Event in full. 

#Hope4MECFS #Hope4FM #Hope4LongCOVID #MillionsMissing