Myalgic encephalomyelitis/chronic fatigue syndrome and long COVID [PODCAST]

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“ME/CFS is a complex multi-system illness that destroys lives (essentially killing the person yet leaving them alive).  It leaves patients with unimaginable fatigue, post-exertional malaise (meaning that minor exertion makes them feel worse), cognitive deficits, cardiovascular dysfunction, gastrointestinal malfunctions, unrefreshing sleep, pain, and much more.

As a person who has lived with ME/CFS for 13 years, I urge everyone to avoid getting it at all costs.  I also want to protect people like myself from getting sick with COVID and having our illnesses worsen to even graver severities.”

Stephanie Marcovici is a patient advocate.

She shares her story and discusses her KevinMD article, “The consequences of unmasking and ending quarantines.”

This episode is sponsored by the Stanford Physician Leadership Certificate Program.

For the aspiring physician leader, leadership skills are one of the most important and influential traits that will elevate your overall success. 
 
Leadership impacts nearly every aspect of your career in a complex and diverse health care system. Including how you effectively communicate and influence those around you, how you respond to conflict and make important key decisions, how you develop your team, and even how you navigate social dynamics in your workplace. 
 
Stanford Medicine recognizes the need to foster physician leaders in health care. That is why they developed the physician leadership certificate program. This 6-month cohort-based program includes live virtual sessions, self-paced learning modules, professional coaching, a capstone project, and much more: Providing C-suite education for the non-C-suite physician leader.
 
They encourage all early career and aspiring physician leaders to apply. To find out more about the program or apply, visit physicianleadership.stanford.edu.

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Rate and review the show at KevinMD.com/rate. Subscribe at KevinMD.com/follow. Today on the show, we have Stephanie Marcovici. She’s a patient advocate, and we’re going to talk about her KevinMD article, “The consequences of unmasking and ending quarantines.” Stephanie, welcome to the show.

Stephanie Marcovici: Thank you for having me.

Kevin Pho: We’ll get into the article in a little bit. First off, briefly share your story and journey to where you are today.

Stephanie Marcovici: OK. Well, because we’re going to be talking about two very complex, debilitating illnesses, I’d like to make two points first. The first one is that people are going to be watching this, and they’re going to see me dressed, showered, sitting up, talking, and smiling, and a lot of people are going to say, “This girl looks perfectly healthy. There’s nothing wrong with her,” when in fact there’s unfortunately a lot wrong with me. It’s on the inside. I’m a very positive person, so, for instance, I’m not going to sit here and cry with you. I even have a website, StephanieMarcovici.com, where I try to help people. I give tools and tips on how to live your happiest life, no matter what you’re going through. I want people to realize that I may look healthy, but I’m not. I’ll talk more about how I’m not.

The other point is that a lot of people will be talking about ME/CFS and long COVID, and a lot of people think that those illnesses are depression. That’s right opposite to what I just spoke about, because people don’t understand these illnesses, so they attribute them to depression. As you can see, I’m smiling. I’m happy. I’m not happy that I’m sick, but I’m not depressed. That’s not the cause of my illness. I just wanted to throw those two points out there because, in my experience as a patient going to see doctors, and even with family members and friends, people just don’t understand that. I just wanted to preempt things with that.

So back to my story. I was a healthy child. I was active. I played soccer, tennis, and baseball, and I did well in school. I did have a bunch of illnesses, though. I had H. pylori around age seven, and I had to be treated for it. I had recurrent strep. I had Epstein-Barr. I’m mentioning these things because we think they may contribute to the illness that I have today.

After I had those illnesses, there was a period of a few years, from 11 to 13, where I had dizziness. Nobody could explain it. I went to the best of the best. I’m sure your listeners know about Dr. Arnold P. Gold; he created the white coat ceremony. I saw him. No one could explain what was wrong with me. As I grew older, more and more symptoms started developing, and when I got through middle school to high school, I started getting fatigue. Now, I was still functioning, so I was doing my schoolwork. I was taking honors and AP classes, so I was working hard, but I was crashing on the weekends. I would come home and sleep basically Friday to Monday, but again, I was still functioning.

Before I went to college, I started getting pain, which continued developing throughout college. By the end of college, I was basically running on adrenaline, and I don’t know how I finished college, but I was able to push through. I got my BA in psychology. I got my teacher’s license to teach kindergarten through 12th grade. I had a job lined up for when I graduated, but unfortunately I never started that job, because once I graduated, I came home and I crashed.

I’m talking now about years and years. I’ve been to at least 35 specialists, going to see doctor after doctor, trying to figure out what is wrong with me, because all of the typical tests that I run come back normal. One rare thing that did come back positive was this autoimmune disorder, so I have been getting treated for that, and that is a reason why you see me sitting here talking. When I was at my worst, I was lying in bed, and just the thought of rolling over in bed was torture. I was in pain. I was so fatigued.

So that brings me to the more recent years and my current symptoms. Fatigue: When people talk about fatigue, it’s not just being tired. It’s being so exhausted that you can’t do daily tasks. My life basically consists of doing self-care tasks. I’m lucky to have my parents, who prepare my food, who do my laundry, who do everything to take care of me. That’s the hallmark symptom of ME/CFS, which I was eventually diagnosed with.

Kevin Pho: And just to be clear, ME/CFS is myalgic encephalomyelitis/chronic fatigue syndrome, correct?

Stephanie Marcovici: Correct, correct. We patients love to use, or prefer to use, the ME part, because, as I said before, with chronic fatigue syndrome, when people hear “fatigue,” they just say, “Oh, OK, the person’s tired.” So the myalgic encephalomyelitis part really steps it up and says, “Hey, there’s something actually medically wrong here.”

So yes, another hallmark symptom of ME/CFS is post-exertional malaise, where you do the slightest exertion, and there’s a range of patients. When I was lying in bed, just walking down the hall to the bathroom would be too much exertion, or sitting up, or talking; it varies per patient. Today, and this is nothing, I wanted to do this podcast, but after today I will have to rest and recover from doing it.

And then of course I have a whole load of other symptoms. I call them my laundry list. I have this strange symptom no one understands where, if I eat just a regular or minimal amount of food, I gain weight. Nobody understands that. I have extreme noise sensitivity. My parents have to whisper and be very quiet; otherwise my whole nervous system goes crazy.

But with patients with ME/CFS, there’s a very wide range of severity of symptoms. Basically, the hallmarks are fatigue and post-exertional malaise, and the autonomic nervous system is often very disruptive. There are few people studying ME/CFS, but the people who are looking into it are looking at it as a neuroimmune disease, a neuroendocrine disease, with lots of inflammation. So a lot needs to be learned about the illness. It’s very complex. It affects all the bodily systems.

So right now I’m in a place where I’m fighting day to day, trying to keep that smile on my face, and hoping, and waiting, and thanking the people who are working on this illness, because it will be solved. In the meantime, I’ve been waiting for 13 years already now, and that’s just me. So it’s going to be a while until people can get their lives back.

Kevin Pho: And leading into your KevinMD article, titled “The consequences of unmasking and ending quarantines,” how have the last few years during COVID been for you?

Stephanie Marcovici: For me, honestly, not much has changed, because I’ve been basically homebound for years and years already. Quarantining hasn’t really affected me, because the only places I would go were to doctor’s appointments. I hate to say this, but a positive of COVID for me has been virtual appointments. I’ve been able to have appointments with my doctors virtually and not even leave my house, which has made my life easier and harmed me less. So that has been a positive.

Kevin Pho: And as you write in your article, the CDC is relaxing COVID precaution guidelines, relaxing mask guidelines. So talk more about how that has affected the ME/CFS community.

Stephanie Marcovici: So it’s scary. It’s very scary, because now it affects us, but I also want to explain how it affects everyone else. It affects really the entire population. We obviously know of babies and immunocompromised people who are unable to get vaccinated, and so if they get COVID, God forbid, who knows what would happen to them. There are patients like me with ME/CFS or other chronic illnesses who, trust me, our lives are bad enough. We really don’t need anything else coming along and making our lives worse.

Unfortunately, with these relaxed guidelines, of not having to mask, not having to quarantine as long as we used to, not social distancing, things like that, the burden is going on the patients, because we have to protect ourselves from everyone else. It should be a two-way street where we’re protecting each other, but unfortunately that’s not the case now.

One of the main reasons that I wrote this article was because most people, including doctors, don’t know about ME/CFS, and what people are learning about now is long COVID. With long COVID, I have learned that about half of people with long COVID are turning into patients with ME/CFS. Now, as a patient with ME/CFS, I want to tell you, you do not want to end up like me. The whole point of my article, basically, is saying, “Be careful, please.” Because there are arguments that, OK, 95 percent of the population is protected because they were either vaccinated or they had the COVID infection. But on the other hand, we also know how contagious the current variant is, and we know how common reinfections are.

Now, in the research that has been started on long COVID, they’ve been finding things like microclots, neuroinflammation, and regular inflammation throughout the body. Twenty-nine-year-olds, I was reading a study, 29-year-olds are dying from strokes after having COVID. So healthy people can have long-term effects down the road in the next few years. We don’t know; that’s one scary part. But also, a lot of patients, whether you’re asymptomatic, long COVID, whether you have a bad case of acute COVID, sad to say, unfortunately a lot of those people are going to turn into people with long COVID, many of whom will turn into patients with ME/CFS. I just worry for all of the people who may end up like me.

Kevin Pho: Now, from the research and reading that you’re doing, are there any studies that show the frequency of people with long COVID eventually becoming those with ME/CFS?

Stephanie Marcovici: I have seen that about half of patients with long COVID will end up with ME/CFS. The symptoms overlap. Now, I don’t want to be quoted necessarily, because there are organizations that have better numbers than I do, but the symptoms of long COVID and ME/CFS overlap. One big difference is that for ME/CFS, you have to have it for at least six months. So if someone is just at the two- or three-month mark, they may really have ME/CFS; they just haven’t reached the time goal yet.

But there’s the fatigue, and there are the cognitive issues. I’m sitting here, and I had to prepare for this interview with you, you know, and kind of ingrain what I wanted to say in my head. I even have a paper here in case I forget something, because my short-term memory is bad. I’m 35 years old. I shouldn’t have to be writing notes just to remind myself of daily things to do, or things like that.

So I can’t tell you the exact number of patients, but we’re in the millions, because with ME/CFS, I think in the United States alone we’re around one to two million of us with ME/CFS. People with long COVID, possibly, if I’m remembering correctly, make up maybe three to four million people. So if even half of those people turn into patients with ME/CFS, you’re still talking millions of people. Now, in the world population, it’s not necessarily a huge number, but a small number is still a big number, and you don’t want to be one of those people. It’s like winning the wrong lottery. You don’t think it’s going to happen to you, but then when it does, it’s very unfortunate.

Kevin Pho: Let’s say you were speaking for the ME/CFS community, and you were in charge of updated masking guidelines, for instance. In your ideal world, what would you do?

Stephanie Marcovici: I would go back to what we were doing. I would have people wearing N95 masks, because we know those are the most protective masks, and wearing them everywhere. I had a family member who was at a doctor’s office yesterday, and in the doctor’s office, the policy was optional for wearing masks. So people need to be wearing masks everywhere, and especially if you’re exposed to someone with COVID. Now you don’t have to wear a mask if you’re exposed. Please wear a mask.

If you have COVID, you should be wearing a mask, but I really hope that you’re staying home, and I would love for people to be staying home for the full 10 days instead of the five days that the CDC has now changed it to. We need to be as careful as we can be. We need to continue social distancing. We need to keep our indoor gatherings smaller. We need to go back to or maintain what we have been doing, because that was saving lives. And in terms of saving lives, it’s not just about people dying, because with ME/CFS, we call it a living death. And again, like I said, you don’t want to end up here.

Kevin Pho: We’re talking to Stephanie Marcovici. She’s a patient advocate. We’re talking about her KevinMD article, “The consequences of unmasking and ending quarantines.” We’re talking about ME/CFS, which is myalgic encephalomyelitis/chronic fatigue syndrome. Now, you’ve talked a lot about this condition, and I just want to give you an opportunity to re-emphasize some of the misperceptions about ME/CFS. If there’s one misperception, not only among the medical community but among the general population, about ME/CFS, what would that one misperception be that you want to clear up right now?

Stephanie Marcovici: It would probably be, maybe, two things that kind of go together: depression, and tired and lazy, that we just don’t want to go about life. Now, if you look at the definition of depression and how they get that diagnosis, it’s because they don’t want to do things in life and they don’t get joy out of what they used to in life. People with ME/CFS, we have lists. We have long, long lists. We dream of the day when we can do things. Even being on a podcast, this is a highlight for me. I’m doing something with my life.

We are not depressed, except when our illness causes depression, and then that has to be taken seriously. But that’s normal. When you stop being able to have a social life, when you’re stuck in bed, when you can’t do daily activities, it’s normal for people to become depressed. But the illness of ME/CFS is not depression. We’re not lazy. We’re not just tired; we are exhausted. Our bodies literally cannot function, and if we force ourselves to function, then we get that post-exertional malaise, where all our symptoms get worse and we lose basically everything.

And that’s, again, just to go back to the COVID measures and long COVID: You don’t want to lose everything. It’s a scary place to be. I keep using the word “scary,” but it’s the truth, because ME/CFS is the unimaginable.

Kevin Pho: And my final question: What are some of your take-home messages that you want to leave with the KevinMD audience?

Stephanie Marcovici: So people probably have gotten this by now, but my take-home message is: Please be careful. Take care of yourself. Take care of other people, even if you don’t know them. Again, you don’t want to end up like me. Patients like me, we’re waiting for research to be done.

Now, this is a big point: The research for ME/CFS is not getting funded. The NIH is not doing what they’re supposed to do. The CDC is not doing what they’re supposed to do. Congress may have to step in and force the government agencies to do research, by providing funding and giving them guidance. They did that with long COVID; that may have to be done. But in the meantime, patients like me, we’re waiting.

There are organizations like the Open Medicine Foundation, the Solve ME/CFS Initiative, and MEAction that are providing education. So I will add that people should please educate themselves about ME/CFS. Whether you’re just a regular person going about life and you want to protect your family and your friends, and for the future, learn about ME/CFS and long COVID so that you don’t get it. And for clinicians out there, please educate yourselves so that you can help patients with ME/CFS and long COVID, because there aren’t many treatments, but there are some, and it’s unfortunate when you go to a doctor and they either don’t believe you or they don’t know how to help you.

So I would say it’s education and funding for research, because the research is the only thing that’s going to get people like me out of bed, out of the house, living our lives, and contributing to society. We don’t want to lose our entire workforce to long COVID. So, education and funding for research, because again, you don’t want to end up like me.

Kevin Pho: And for those interested in reading more about ME/CFS, what kind of resources do you recommend?

Stephanie Marcovici: I do recommend the Open Medicine Foundation, or OMF; the Solve ME/CFS Initiative; and MEAction, or they do hashtag MEAction. They provide wonderful resources. There’s the Workwell Foundation, for those who think that we should, “Oh, just get up and exercise. You’re deconditioned.” Because that’s another issue. The Workwell Foundation has information on how exercise harms people with ME/CFS, and they have research studies and protocols that are great.

But even if somebody wanted to, there’s Ron Davis at Stanford University, who’s a genius. He worked on the Human Genome Project. He’s like our leader in the community, because unfortunately his son has severe ME/CFS, and he is fighting tooth and nail. There’s a working group this week of hundreds of scientists who are getting together and talking about the research that they’re doing and potential avenues to follow. So if somebody wanted to donate, even straight to Ron Davis, they could do that.

But otherwise, I think the Mayo Clinic, I think they have followed, for instance, MEAction’s resources and updated their guidelines. You have to be careful about where you look, because there’s inaccurate information and then there’s accurate information.

Kevin Pho: Stephanie, thank you so much for sharing your story, time, and insight, and thanks again for being on the show.

Stephanie Marcovici: Thank you.

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