Science Ryan Prior discusses the motion to expand studies and resources for those with prolonged COVID.
President Biden has declared the end of the national COVID-19 emergency, but others living with prolonged COVID say the pandemic is far from over. The Centers for Disease Control and Prevention found that nearly one in five people infected with COVID-19 continue to have long-term COVID symptoms. We reached out to scientific editor Ryan Prior about the proposal to expand studies and resources for other people with long-term COVID, and his own experience of living with a chronic illness. Prior is The Long Haul and writes “Patient Revolution” for Psychology Today.
This is an urgent transcript. The copy may not be in its final form.
AMY GOODMAN: It’s Democracy Now, Democracynow. org, The War and Peace Report. I’m Amy Goodman.
This week, President Biden signed legislation declaring the end of the national COVID-19 emergency. But the pandemic continues for millions of people living with COVID for a long time. The Centers for Disease Control and Prevention found that nearly one in five people inflamed with COVID-19 continue to have long-term COVID symptoms. One of them is Democratic Senator and former vice presidential candidate Tim Kaine.
SEN. TIM KAINE: I contracted COVID in March 2020. My case was mild and until early April 2020 I was fine, unless I had a persistent symptom. When I first had COVID, I noticed all my nerve endings tingling, 24/7. It seems as if they are soaked in an Alka-Seltzer, as if everyone has had five cups of coffee. I didn’t communicate it for a while, because I thought that one day I would wake up and that symptom would disappear. But that didn’t happen. Three years later, the symptoms haven’t gotten worse, but they haven’t gotten worse either. Since then, I knew that my prolonged COVID symptom is a particularly imaginable sequel to this viral infection. And while it probably won’t get worse, it may never die. I wish I hadn’t had COVID for a long time, but having it connects me to other people across the country who do.
AMY GOODMAN: Sen. Kaine of Virginia reintroduced the CARE for Long COVID Act with Sens. Ed Markey and Tammy Duckworth last month, but investment and resources remain limited. March.
TERRI WILDER: An estimated 10 to 20 percent of all Minnesotans who have COVID have experienced long-term COVID symptoms. This suggests that there are potentially many thousands of Minnesotans with prolonged COVID, who are experiencing significant effects on their health, functionality, and quality of life. And that includes children, teens, and young adults.
It is also estimated that about 50% of other people with long-term COVID meet the clinical criteria for my disease, myalgic encephalomyelitis. And it is a debilitating and complex disease that affects several structural systems. It is a neurological disease, according to the World Health Organization.
I should also emphasize that COVID-19 has had a disproportionate impact on Black, Indigenous, and non-white communities, as well as low-income, rural, disabled, and elderly populations.
AMY GOODMAN: For more information, we’re joined in Atlanta by Ryan Prior, writer-in-residence for the Century Foundation and The Long Haul. His new article for The Nation magazine is titled “The Long COVID Revolution. “His new column for Psychology Today is titled “Patient Revolution. “He is also a member of the Board of Directors of #MEAction.
Welcome to democracy now!, Ryan. First, in more detail what is ME, how it relates to the long COVID. And, I mean, you’re not just writing about it; You enjoy this every day. Talk about your life experience.
RYAN PRIOR: Yes. Thank you for having me.
MS refers to myalgic encephalomyelitis, as Terri Wilder spoke in the segment. And “myalgic” refers to pain; “Encephalomyelitis” refers to inflammation of the brain and spinal cord. It’s also called “chronic fatigue syndrome,” so it’s called ME/CFS. Therefore, it is a neuroimmune disease that does not have an FDA-approved treatment. And many patients become disabled and unable to work.
I’m lucky to be in it, although some of the worst reports of my life have given me a step forward, and now I’m in a scenario where I have a more benign case and I’m checkered. But I use my voice as a journalist, as a lawyer and now I paint for a think tank, working on public policy, to look for concepts and scenarios and tell the stories of millions of other people who can’t tell their own stories and can’t live their dreams.
And the main symptom of ME/CFS, and the main symptom of prolonged COVID, is called post-exertional malaise, which means other people make minor efforts, such as showering or walking down the block of your street, and may leave. bedridden or with health problems for days or even weeks. thereafter. Therefore, it is very unlikely that you will participate in the company, if you cannot carry out the fundamental functions.
AMY GOODMAN: So, Ryan, come forward about what it means for President Biden to say that the national COVID emergency is over, which means for millions of other people who have been suffering from COVID for a long time. What do you think he wants to do?
RYAN PRIOR: So for other people who suffered from chronic illness for decades before the pandemic, many think prolonged COVID was a time when their wishes would be fulfilled. And there’s been a huge strength of the chronic disease network that has helped embolden the long COVID movement, this long COVID revolution that we’re talking about in the article, that so many teams have combined right now for a super post-viral disease in a way they’ve never had before.
So the message that our chronic disease network would have for President Biden is to recognize the fact that there are millions of people who lack other people, millions of other people who lack their lives, and that lately there are still millions of dollars missing. of studies that need to be done and drug repurposing trials that need to be done to urgently find new remedies to help others with prolonged COVID.
As a company, we came here in combination with a public-private partnership for Operation Warp Speed, creating vaccines at the fastest speed and delivering them to the entire population faster than any vaccine in history. Now we have the opportunity to do something for a long time COVID, to do a Warp Speed operation. There are dozens of drugs that can work only for ME/CFS and for a long period of COVID, and we want a much greater urgency from the National Institutes of Health and others to get those proven remedies. And many of them will likely work to treat the prolonged and debilitating symptoms of prolonged COVID.
And that’s a moment, perhaps, if we can really be informed to characterize, research, and treat a number of other diseases, not just prolonged COVID, but prolonged COVID is a way of perceiving, as I mentioned before, ME/CFS, some other disease, postural orthostatic tachycardia syndrome, POTS, which means that other people’s blood: The central frequency increases rapidly when the state and other people faint. This is another main feature of prolonged COVID. So, there are many other chronic diseases that are chronic post-infection diseases. And as long as COVID represents a time for all of us as a society to perceive the number of other people living with invisible disabilities, those millions of people who lack other people who are confined to their homes or bedridden, and this is their time to be brought back into the mainstream of medicine.
AMY GOODMAN: Ryan Prior, in his book, his columns, his articles, draws on the story of HIV/AIDS activists with ACT UP, which replaced fitness policy, and disability activists, who climbed the steps of the U. S. Capitol. for passage of the U. S. Disability Act. U. S. Talk about this kind of action, what you call a “patient revolution. “
RYAN PRIOR: Yes, my colleague Fiona Loewenstein and I wrote an article for The Nation. Fiona is the end of an e-book called The Long COVID Survival Guide, and I also wrote an eBook chronicling the rise of patient groups, most commonly online. And our article for The Nation begins with a #MillionsMissing protest outside the White House that took position a day after the president declared in 60 minutes that the pandemic was over. That was last September.
But I think this protest is indicative of a larger story of other people with diseases that were not well identified by the medical establishment, that were combined for a cure, combined for treatments. ACT UP and the Treatment Action Group in the 1980s and 1990s are kind of a hallmark of what advocating for exercise looks like after an epidemic or pandemic, and so did those who campaigned for passage of the Americans with Disabilities Act. In 1990, this new generation stepped up, thinking about how to protect chronic diseases. This protest in front of the White House is part of this noble culture of patients speaking on behalf of those who cannot speak for themselves.
And one point I’ll make here is that because other people with ME/CFS are so disabled and revel in discomfort after exertion, it’s hard to make even a small protest a major accomplishment in our community, because so much of this has to take place on social media, and other people are too bad in health to faint.
But I think it’s a step forward. And bringing more media attention to this event, and this broader movement, is something policymakers want to understand. And Senator Kaine’s CARE for Long COVID Act is one of many solutions. This Warp Speed operation for long COVID remedies is another concept that I think you want to see acted upon. And patients will gather next week for Long COVID Defense Week on Capitol Hill, telling members of Congress to go ahead with those spending and greenlight millions, if not billions, of additional dollars that can only be used to treat this disease.
If we don’t act temporarily to find, cure, and treat it, or to provide hotels or disability benefits to those who are sick, the long-term effect of that, the long COVID, is of a magnitude and scope that is difficult to understand. Harvard economist David Cutler estimates there would be a $3. 7 trillion effect — “trillion” with a T — on the U. S. economy. We will be in the U. S. for years to come, if we don’t take on the long COVID now. , a basic and pressing method for prolonged COVID studies is really vital to helping other people achieve their dreams that they may not be able to live the life they wanted.
AMY GOODMAN: Well, Ryan Prior, I want to thank you very much for coming to the studio in Atlanta, Georgia, especially considering the value you’ll pay for it, that you’re suffering from prolonged COVID yourself, but how important it is. is a percentage of this information. And we will continue to cover this well-understood, untalked about factor of the long COVID. Ryan Prior, a resident journalist for the Century Foundation, wrote the e-book The Long Haul. I’m Amy Goodman. Thank you so much for joining us.
Amy Goodman is the host and executive producer of Democracy Now!, an independent, daily, award-winning national news program that airs on more than 1100 public radio and television stations worldwide. Time magazine named Democracy Now! as well as NBC’s “Meet the Press. “
Get daily news, detailed reports, and critical investigations from journalists, activists, and thinkers who roam our world.