Long COVID: What Do You Need to Know?

What happens if you contract COVID-19 but never fully recover? This is the reality for Long COVID patients, who face a condition that lacks a standard diagnostic test, treatment, and scientific consensus. Long COVID patients also face stigma when friends, family and medical providers underestimate the severity of the condition. On top of that, these patients often face challenges accessing disability benefits. In this episode, explore what we know about Long COVID — and other elements that remain a mystery. The Vitals team sat down with Ed Yong, Pulitzer Prize winning journalist and author that has covered all aspects of the COVID-19 pandemic including reporting on the existence of Long COVID. We also learned first hand, from Margot Cage and Charlie McCone, what the reality of living with Long COVID looks and feels like today.

And don’t forget to check out the latest on PBS Food, a channel that has shows covering the history of iconic dishes to food science, to finding the best South Asian food in America. Here's a link to SPICE ROAD:

Let’s Connect:

Find our experts and hosts:

:: Sheena William, RN ::
Twitter: @Keepingitkinky1
Instagram: @keepingitkinky

:: Alok Patel, MD ::
Twitter: @AlokPatelMD
Instagram: @alokpatelmd

:: Ed Yong ::
Ed is a journalist who covers COVID-19 and Long COVID. Yong won a Pulitzer Prize for his coverage of the COVID-19 pandemic. He is also a New York Times best selling author and currently reports for The Atlantic.

:: Charlie McCone ::
Charlie is a Long COVID patient and advocate.
Twitter: @loscharlos

:: Dr. Margot Gage ::
Dr. Gage is a social epidemiologist, assistant professor at Lamar University, and a Long COVID patient.

Want to Read More?

Recent research, common symptoms of Long COVID

CDC and NIH on Long COVID:

Ed Yong’s reporting on Long COVID

Does vaccination protect against Long COVID?

More on Long COVID and stigma

Brookings Institute report on Long COVID and unemployment

More on navigating disability benefits with Long COVID

Long COVID support groups

This episode of Vitals is licensed exclusively to YouTube.

00:00 Intro
01:39 What is Long COVID
02:46 Ed Yong, reality of Long COVID today
04:14 Margot Gage talks about her Long COVID diagnosis
04:59 Charlie McCone talks about his Long COVID challenges
05:51 What it's like living with Long COVID
07:53 Similar to other medical gaslighting examples
09:04 Who is most vulnerable
11:40 Recovery is possible

[somedude]

Dianna, the very much loved host of the Physics Girl YouTube channel, has been suffering terribly from this for months. She has always been very energetic and now can barely move.

[jenniferfoster]

Thank you to PBS for taking this issue seriously. Including people who have long Covid and people like Ed Yong, who has researched it in depth, is crucial. Too many interviews are done with 'celebrity experts' who minimize the risks of Covid, the incidence rate of long Covid and the horrible experiences of those with long Covid. This was very well done and appreciated.

[owenjwhite]

This is a great piece. Really brings it all together in terms of the gaslighting, psychologising, the infection-associated chronic illness landscape, and the degree of disregarded expertise in the patient community. Pieces like this are important on the road to moving past all these obstacles.

[wildflowerzme]

I got covid Christmas Eve 2021 and I was sick in bed for over 5 months. Took me almost 9 months after to even have the energy to wash dishes or take out the trash. I couldn't do either. I would wash maybe 2 dishes get tired and go sleep for another 10 hours. Going the the market for food was not only mentally exhausting just knowing I had to go, actually going knocked me out for days. Just thinking about doing anything is puts me in a panic stress because I know even today it's going to be hard. Having to take breaks just to get dressed. I have no income and my savings is just about gone. I have tired to fill out the Disability but I can't seem do it. I hear all the issues of others not getting it makes me just me not even try. it's too exhausting to even start to even get turned away. Having this brain fog makes it all just too much. Living alone is just better right now. i can't even take care of everything for myself no way i can deal with someone else again. I cant stand this way of living. I hope one day I just wake up and it's all gone. I miss my life. Covid didn't take my life but it sure did take my way of life. I breath but don't really live. UGHhhh

[AmyDentata]

I hope the research into long covid gets people to realize a lot of chronic fatigue-type conditions are probably post-viral syndromes from other diseases.

[amylizbrarian]

As someone with some of those other chronic & autoimmune illnesses, I have to agree that the issues we’re seeing with long covid are definitely not new! Including the medical gaslighting (it took at least 12 docs over 3+ years to get a fibro diagnosis, and closer to 10 years for some other conditions). There’s also a lot of overlapping symptoms (PEM being a major example) and eerie similarities in onset. I have fibromyalgia, and i also know people with ME/CFS, that predates the pandemic by many years. For many of us, our illness seems to have been “triggered” by fairly common/mild illnesses like run-of-the-mill cold viruses or bacterial infections. A few months before my fibromyalgia symptoms started or became really noticeable/debilitating, I had a really nasty sinus/ear/throat infection and bronchitis. Some doctors speculate that these kinds of chronic illnesses can happen when the body fights off an infection but then the immune system (or other systems) doesn’t get the memo to go back to normal, non-infection levels of activity. One of my doctor’s once described fibro pain to me as the pain receptors malfunctioning (like a volume dial, where my baseline got messed up so now most people’s 1 feels like a 5 to me).

All of this could explain why symptoms and severity vary so much between patients, and why it is so hard to find simple diagnostic tests or universal treatment plans. If one person’s COVID infection caused a bit of lung or heart damage, and another’s caused brain or neurological damage, their biggest symptoms (and their test results) are going to look very different.

My biggest frustration is that the pandemic gave us an opportunity to do better for ALL infectious diseases. This could have been a chance to change the culture - make it the norm to wear a mask during flu season, stay home or mask when you have a cold, improve air filtration in schools and offices, wash hands and cover your nose/mouth when sneezing and coughing - and yet so many people have gotten WORSE since the pandemic. It wasn’t socially acceptable to cough on strangers before 2020, but now some people seem to think it is their RIGHT and essential to their personal freedom! To me, “living with COVID” should mean learning from it by being better about protecting each other from any infectious illnesses, offering more flexibility and accommodations to everyone, updating our air quality standards, and providing compassionate and accessible medical care for all. NOT pretending that it’s gone and refusing to do anything that reminds you of the pandemic (whether it was totally new to you like masks or increased emphasis on normal stuff like hand washing).

[bpygkor]

This needs much more attention, people need to see the significance of this.

[kevincronk]

Something like 6% of the US population being unable to effectively contribute to society or the economy is terrifying to think about

[carolashlee]

It’s a pandemic in its self
My life has gone down the toilet.
I had to sell my caravan, cancel my travel plans and buy a small unit to live in.
Worsened asthma, Micro clots, Pots & MCAS.

I was gaslighted by many Doctors and emergency.

I now have a Doctor

[bluewaters]

I feel really bad for people who are not getting the disability they need. Back in 2010 I was so disabled with pain, braingfog, and stress that my social worker was able to get me immediate disability. I never went to a court or had a lawyer. But the paper work and tests really overwhelmed me. I was actually sent to a physchologist first because they thought I was having a nervous breakdown. My rental house had burned down leaving me homeless with a 17 year old and a broken foot along with disc issues. I had no money and could not work I was 59 years old. People who recover from long covid will not stay on disability if they can work. Unless you have a roommate you cannot make it on the small amount you will get. I wish the government would understand this and let younger people get disability when they clearly need it.

[RaigonZelo]

I woke up one day in Jan 2021 and I couldn't even get out of bed without being out of breathe. Had to take breaks while showering to catch my breathe. Lasted 3 months, and was mostly recovered by then. Sometimes it comes back and I'm sick for a few weeks to a few months

[AmarisFrede]

I hope there can soon be a clear method to test this. Cuz having to depend on doctors to take mental fatigue serious without telling you you're basically lazy is a pain already.

[annalisette]

Long before SARS-CoV2, there were viral outbreaks which left a noticeable percentage of people disabled for a long time or permanently. Outside of the U.S. these conditions tended to be called ME/CFS. In the U.S. doctors belittled, marginalized and ridiculed such patients when asking, "Don't you want to get well?" Like thinking oneself well was the answer and failure to do so demonstrated a failure of the suffering patient. If such people didn't learn to shut up, go away and take up a new hobby like steadily consuming alcohol, cold hearted doctors discarded these patients into the human garbage dump of psychiatry. Out of sight, out of mind, and no one ever needs to listen to a mental patient!

A couple years ago when the COVID death rates were stunning the world, I commented that perhaps over 30%* of those who recover will be damaged for a long term or permanently. To me, this was the worst outcome. I was ravaged by another mystery virus years ago before SARS-CoV2 was a thing. I have friends who were similarly damages during outbreaks. *(A researcher had theorized something like 33% of those who survived COVID would be permanently damaged.)

Now, the global spotlight of shame is upon doctors and researchers who cruelly ignored suffering people for decades! The origination of SARS-CoV2 is hotly debated. Especially if any level of human error is ever proved as causative for this disaster, SCIENCE OWES THOSE WHO Doctors and researchers will not weasel away this time! Keep the heat on!

We cannot think ourselves well! To demand such is excessively cruel! Work to find the causes and then develop cures! Until that happens, respect those who suffer! I find no fault if a doctor cannot help me so long as s/he acknowledges that I am sick. Science does not have all the answers & that's reality. In the meantime, let us all work together to find solutions!!!

[stzmrcb]

Thank you PBS for giving those of us with Long Covid a platform and a voice.

[Jennifer-ichg]

Excellent video. Definitely shared with friends. I have been suffering since a mild case back in June 2020. Denied long term disability and social security disability. Appealing both but not going to hold my breath.

[jesjes]

You. Have. No. Idea. How much I needed this video. I’m in tears. I got sick September 2022 and had long covid since. I had severe vertigo for about four months and developed a vestibular disorder. The fatigue? I now know that it isn’t in my head. I didn’t have anything online to go off of last year.

[krystalfiliatrault]

I currently deal with Long-term COVID backlash, and I want to say Thank You to this videos creation.

It honestly does feel like a lot of gaslighting by doctors. Heck, even before I had this I was dealing with similar issues of "you're too young to have this issue", thus it got pushed to the side and left as a last ditch attempt to figure things out.
I'm 38yrs old now, but have permission to move into a 55+ seniors apartment building because I NEED grab bars and other things in the house now due to all the long-term issues.

The fatigue is ridiculous, the aches and pains in the muscle tissue feels like it's almost INSIDE your bones (I wouldn't be surprised if it was), and I can't stand up to even do dishes anymore. It's likely I'll have to start paying for a cleaning lady to get my house chores done once a week/once a month, because I just can't do them. The worst part is that I'm in Vancouver, Canada and the cost of living is through the roof. I can't afford a cleaning lady. So where does that leave me?

Edited: And yes, I'm female and on disability benefits. Lives alone.

[scarymonsterer]

Thanks for the report. There is also a real need for pediatric studies of long Covid. My teenage nephew was diagnosed with mono, flu and even Covid (2nd time) incorrectly. It was long Covid. He missed half the school year. He's still not receiving proper treatment. He's just trying to power through. It's heartbreaking.

[TurtleMoonTube]

I am among a very large group of people with long-covid who are denied access to long-covid clinics because we were sick atthe begining of the pandemic when the PCR Lest were very limited. We were also told not to come to doctor or hospital unless we "couldn't breath". I had never been so sick and for so long. Then as I was starting to feel better, I started walking every day just to try and improve recovery. That's when I got worse again. that was the beginning of long-covid. My cognitive impairment (MCI) that is made worse by even mild physical and cognitive activity means I cait work, and can barely care for myself. the long-covid clinics are too overwhelmed to even consider helping patients like me no matter how sick we are. I have finally started the application process for disability. Apparently, I, and all the othas like me, are expendable.

Yeah, there areclinics in many places. But, then doesn't mean that there is access to care ! Considering the number of long-haulers and how long and how disabled we are, there is just not enough care and resources toward solving this massive problem.

Nice that you mention LC. But, you are not even coming close to capturing the ongoing lack of resources. You encourage is to seek help that doesn't exist for us. We also need more research funding going toward real help.

[rmqjjhl]

This is so important, thank you so much! I have had Long Covid/PASC since March 2020, and it has severely affected my health. I am still sick, and even something as simple as walking up and down the stairs makes me exhausted to this day. This video was so validating. Also, huge shout-out to Ed Yong, your coverage of long covid is amazing, thank you so much! It's so hard to wake up every day and have no idea what's causing my debilitating symptoms and have no idea when, or even if, I will feel better. More awareness and research into this condition is so important, I really appreciate this! Thanks, PBS Vitals! ❤🩺🩹