Even months after a COVID infection clears, some people are left with debilitating symptoms - brain fog and extreme exhaustion after performing everyday tasks. What does long COVID have in common with ME/CFS - myalgic encephalomyelitis, formerly known as chronic fatigue syndrome?
We speak with Dr. Alba Azola, a rehabilitation physician who works in the Johns Hopkins Chronic Fatigue Syndrome Clinic.
Plus, Melinda Lipscomb and Whitney Fox share about their experiences living with ME/CFS. They are the co-chairs and co-founders of the Maryland chapter of #MEAction.
This interview originally aired April 5, 2023.
Learn more about ME/CFS:
Long Covid Impact on Adult Americans: Early Indicators Estimating Prevalence and Cost
Solve M.E.
For long covid fatigue, a strategy called ‘pacing’ helps, but at a cost
TRANSCRIPT:
Sheilah Kast: We’re OTR! I’m SK. Good morning. For some people, even months after a COVID infection has cleared, symptoms like extreme fatigue and brain fog linger, interrupting daily life.
Researchers at Stanford University looked at a group of 105 long COVID patients whose symptoms persisted for at least six months. Forty-five of those patients met the criteria for myalgic encephalo-myelitis, previously known as chronic fatigue syndrome. It’s commonly abbreviated as ME/CFS.
Like long COVID, ME/CFS has a broad range of symptoms.
In April, I spoke with rehabilitation physician Dr. Alba Azola, former co-director of the Johns Hopkins’ Post-Acute COVID-19 Team.’ She now works in the Johns Hopkins Chronic Fatigue Syndrome Clinic. I asked Azola when, during the pandemic, she noticed patients presenting with chronic fatigue…
Dr. Alba Azola: Yeah. So it was quite interesting because I had not been treating that population before. When we opened our clinic in April of 2020, we were focused on or expecting to have a lot of critically ill patients coming in for rehabilitation. But we knew that like with other pandemics like Sars-cov-1 or Merce, that there were going to be patients that were not severely ill but had some lingering symptoms. In the summer of 2020, we started seeing this patients with less severe acute illness presenting with symptoms that to me appeared similar to our autonomic dysfunction patients or patients suffering from condition called pots pots. These patients presented with brain fog, fatigue, palpitations on standing, difficulty tolerating, standing. And what's interesting is that we noticed that similarity and we had physical therapists that knew how to manage this patient population, and we started working with them. But there was a subgroup of patients that were not responding to physical therapy interventions that we use for autonomic dysfunction, the same way that we are used to seeing these patients were experiencing severe post exertional symptom exacerbation.
Sheilah Kast: Where symptom exacerbation means they were getting really tired after they exerted themselves.
Dr. Alba Azola: It's beyond tired. These patients actually will kind of feel pretty good, do a little more than usual. And this is nothing exaggerated compared to their baseline. Like, you know, for example, doing their laundry or cleaning the house. And then 12 to 48 hours after the exertion, they have a myriad of symptoms that flare, including the sensation of heaviness, feeling myalgia, which is that feeling like when you're going to have a viral infection feeling achy in their body. They also have neurologic symptoms like tinnitus or tremors or even worsening cognitive impairments. So it's a little bit different than just doing the activity and then requiring some rest right after you do it.
Sheilah Kast: Some long COVID patients may develop ME/ CFS, but others do not. What what are the similarities between long COVID and ME/ CFS?
Dr. Alba Azola: In my clinical experience, we see that post-COVID patients can experience fatigue, but not all fatigue is equal. We have patients that experience some fatigue from deconditioning because they were ill for a period of time and did not have their usual physical activity. We can also see some post-viral illness that requires a few months to recover function back to their pre-COVID baseline. But then there's this smaller subgroup of patients that meet the criteria. For me, CFS diagnosis, which like I mentioned earlier, includes severe debilitating fatigue that prevents them from doing their daily activities for more than six months, post exertional symptom, exacerbation, impaired sleep standing intolerance and cognitive impairments.
Sheilah Kast: What symptoms of long COVID are not associated with ME/ CFS?
Dr. Alba Azola: You know, if you think about it, there's there's not that many, right? But again, not all long-covid patients. Have the same cluster of symptoms. So so like I said, some long COVID patients have symptoms of CFS but don't have the entire picture for the syndrome diagnosis. So, you know, you can have a patient with Long-covid who experiences isolated cognitive impairment without the presence of severe fatigue that, you know, has post exertional symptom exacerbation or any physical fatigue at all and just purely cognitive impairment. So there are several different types of long COVID patients and some of them have the whole picture to receive the diagnosis of CFS.
Sheilah Kast: What does treatment look like for this type of extreme exhaustion?
Dr. Alba Azola: Yeah. So for patients that have or meet the criteria for CFS, these patients required a very individualized approach. We certainly hone in to teaching them skills of how to manage their energy envelope, how to pace their day to day activities so that they're not expanding beyond what their energy envelope is. So we do some education. We have occupational therapist or physical therapist that can help the patient implement energy conservation strategies into their day to day activities.
Sheilah Kast: Give me an example.
Dr. Alba Azola: A simple example would be for cooking. Instead of preparing a meal all at once, break a task into smaller pieces so prep the meal seated without being standing and taking breaks in between so that you don't push through the entire process of prepping the meal, cooking it, and serving all in one one time. Right? You want to break up task into smaller pieces.
Sheilah Kast: This is on the record. I'm Sheilah Kast speaking with Dr. Alba Azola co-director of the Johns Hopkins Post-Acute COVID 19 team, about the connections between long COVID and Myalgic Encephalomyelitis, previously known as Chronic Fatigue syndrome. What are you hearing from patients about what it's been like to seek treatment for ME/ CFS After COVID.
Dr. Alba Azola: The treatment available for chronic fatigue syndrome are limited, and providers, medical providers that understand the diagnosis of CFS and the treatments that can help the patients manage their symptoms is even more limited. So prior to the pandemic, patients with had a really difficult time finding longitudinal providers that could help them. There were very few in the nation with long waitlist once the pandemic hit and providers that were like me that were following patients post-COVID started to notice the relationship. We've been sharing the knowledge that has been accumulated through the past decades of this, specialists that have been treated MS patients and trying to spread the clinical pearls that this clinicians have been utilizing. So it's been really interesting now. The patients with long COVID in general have a difficult time navigating the medical system and accessing care. And now we have an even larger number of patients requiring chronic fatigue management. And we're certainly not enough in terms of the post-COVID clinics and the few specialists that were out there in order to be able to provide the care needed for the millions of patients experiencing long COVID and a large number of them qualifying for CFS diagnosis.
Sheilah Kast: President Biden and Congress are ending the National Emergency and Public Health emergency declarations. What what comes to mind as you reflect on the three years since the pandemic hit the US?
Dr. Alba Azola: It's an interesting time certainly to to see that, you know, the society has. Basically got past the pandemic and people are not using, you know, general precautions like masking in public spaces or crowded spaces. I almost want to invite them all to my clinic. Let's see how this virus can really affect people in a chronic way. For some of my patients, they're going on 2 or 3 years of having disabling symptoms. So I think it's it's a little bit exciting that the numbers of people that are dying from COVID are going down and that we're so good at treating it. And we have developed treatments and preventative strategies. However, patients that do have the COVID infection are always at risk of developing long-covid. And it's sometimes those people that don't feel the need to protect themselves because they're young and healthy that, you know, are basically playing Russian roulette in terms of getting an infection and developing long COVID. We think about 10% in a very, very conservative estimate, about 10% of people that contract COVID will develop long COVID symptoms.
Sheilah Kast: Seeing the needs of your patients, a re you concerned that the end of the formally declared emergencies will deprive your patients of of something they need?
Dr. Alba Azola: Yeah. I mean I think that there the implications that that has for Medicaid and Medicare coverage in some of our patients it's going to impact their access to care in a medical system where there are clear barriers to care from people with lower socioeconomic status, immigrants, etcetera. So this is just another layer of barrier to access to proper medical care for millions of patients.
Sheilah Kast: I'm grateful to you for talking with us. Thank you.
Dr. Alba Azola: Thank you for highlighting this topic.
Sheilah Kast: Dr. Alba Azola is a rehabilitation physician with the Johns Hopkins Chronic Fatigue Syndrome Clinic. We spoke in April. Short break, OTR. When we’re back, advocating for the ME/CFS community. I’m SK. Stay with us!
Sheilah Kast: Welcome back to OTR. I’m SK.
We’re talking this morning about myalgic encephalo-myelitis. formerly known as chronic fatigue syndrome. The shorthand is ME/CFS. It’s a complex chronic disease: a patient’s symptoms typically get worse after they exert themselves physically or mentally. While the exact cause is unknown, in many cases, ME develops after an infection.
And that may be true for COVID infections. Some people with long COVID are experiencing symptoms that mirror ME/CFS … and are joining the call for more research and funding.
Melinda Lipscomb and Whitney Fox live with ME/CFS. They are the co-chairs and co-founders of the Maryland chapter of #ME Action. When we spoke in April, I asked Melinda Lipscomb what MEAction is, and why they started a Maryland chapter…
Melinda Lipscomb: So ME action is a global now movement of people with ME and allies who don't have to pardon me . My brain is going to come in and out at times.
Sheilah Kast: That's fine.
Melinda Lipscomb: It essentially is an advocacy and activism organization, grassroots patient, led, founded in 2016. And essentially we all found each other online and have come together and have done direct action campaigns and movements to bring attention to this long, stigmatized illness.
Sheilah Kast: Whitney When did you notice people with long COVID starting to get in touch with ME Action.
Whitney Fox: I noticed an influx of long COVID patients within the first few months of the pandemic, as early as March and April of 2020. People were finding us and noticing the similarities in our symptoms and looking for support, looking for help, tips and guidance on how to navigate the medical system, how to navigate these symptoms that are incredibly debilitating and often disabling. And it's it's just snowballed from there. I feel like every every week a friend or an acquaintance is putting me in touch with somebody who's experiencing these long haul symptoms.
Sheilah Kast: And and for you, Whitney, what has it been like to see the pandemic leave people with ME in its wake?
Whitney Fox: If I'm being honest, it's traumatizing. It's something that I talk about with my therapist every session. Um, we knew this was coming. We warned our leaders that this was coming. It's infuriating to see this happening to other people. It's depressing to see that they're facing the same kind of stigma and disbelief and gaslighting that I dealt with. But it's also really empowering and really encouraging that there are so many of us and people are finally listening and that the long haul COVID patients, they're not starting from scratch. They have this basis of advocacy from groups like ours, and we take inspiration from groups like Act Up and AIDS Advocacy. So we're not starting from scratch here. And that's the really exciting part for me.
Melinda Lipscomb: And I'd like to say for me, my trigger was H1N1, the swine flu in 2009, and I never recover from that. So you could say I have long H1N1. So from from the start of this, I was shouting into the void because I knew what happened to me and what I went through. And I know that I wasn't alone. You know, Whitney and I both came into the ME spectrum because of H1N1. And we have found so many others online who have such a similar story. And we truly knew that this was going to happen with COVID. And it honestly, you know, my entire journey in advocacy and in in education and all of this has been don't want somebody to have to go through what I've gone through.
Sheilah Kast: Whitney, what misconceptions do people have about ME?
Whitney Fox: I think the big misconception is that ME mainly affects middle aged white women. When you don't fit that stereotype, it makes it really hard to access a diagnosis. And that stereotype is is false. Marginalized groups are disproportionately affected, but ME can affect anyone. I think that was one of the challenges with my diagnosis, was that when I was young, they didn't think something like this could happen to a young person who looks healthy. And unfortunately, that led to a very long diagnostic delay until I hit my 30s and became unable to work. Like Melinda said, I basically had to become disabled and bedbound in order for me to find answers. Another one is that it's just fatigue. The name Chronic Fatigue Syndrome makes it easy to reduce ME to that one symptom, but it's a complex chronic illness that affects multiple body systems. I have symptoms throughout my entire body that can be attributed to me, and it's the kind of fatigue we're talking about really needs its own name because it's not your standard definition of of fatigue. It's fatigue that's lasted six months or more. It's not caused by ongoing exertion. It's not relieved by rest or sleeping. And it's causing a huge decrease in function that affects our ability to do routine daily living activities. 75% of patients are unable to work and 25% are housebound or bedbound. And the CDC even acknowledges that most patients are undiagnosed. So most people are dealing with these symptoms and they have no answers and nothing that they can do to really address the symptoms.
Sheilah Kast: That's Whitney Fox, who is living with ME/ CFS or Myalgic Encephalomyelitis Chronic Fatigue Syndrome. This is on the record. And I'm Sheilah Kast. Also with us is Melinda Lipscomb. They co-founded and co-chair the Maryland chapter of ME Action. We're talking about the group's advocacy and how that has been shaped by long COVID. And Whitney, I wanted to pick up on that. The US Government Accountability Office says as many as 23 million Americans are suffering from long COVID, and as many as 1 million of them are unable to work because of it. Whitney, what is ME Action advocating for right now?
Whitney Fox: One of the things that we're working on here in Maryland is establishing contacts and connections with our state legislators and with the more administration. We have a new governor in place, and we really want to try to make contacts with them and work with them on a state level. What we can do here in Maryland, we're continuing to do awareness events. May 12th is ME Awareness Day, and we do proclamations on the county, state and city level to recognize May 12th is ME Awareness Day. We are meeting with our congressional representatives later in April as part of Solve ME and Solve long COVID Advocacy Week to urge for research funding. There is so, so much that we need to do surrounding this illness, but mainly it's we need people to be aware of what this is and and ways and care. Yeah. And we need ways to manage this and navigate this transition from being a healthy, active part of our community to being a person with a chronic illness that's disabling. It's a really hard transition, especially for me. It's been really difficult to unlearn my internalized ableism and give myself compassion and grace as I'm dealing with this incredibly difficult illness that has no support.
Sheilah Kast: Melinda What advice would you give to people who have long COVID and who are experiencing symptoms that mirror ME?
Melinda Lipscomb: The first thing that I always say is listen to your body and believe yourself. For so long I know I personally it was, you know, put off to stress. It was put off to burn out. I was just overworked. You know your own body and you know that there's something going on. And the difference between you've experienced tired and fatigued before. And this is different to know that there are resources out there you might not be able to get it from your doctor or going online and you know, some of the med sites and finding it easy. But there are many of us out there and you can find us and connect with us through these different support organizations or advocacy organizations and through social media. And third, don't push yourself. You know, we we've grown up in this society where you're supposed to be on all the time and doing all the time. And it's about the hustle when it comes to ME and long Covid, it means that it can hurt you and it means that it can disable you. So rest, you know, even if it's just 30 minutes here a night off there, those things can keep you from the me turning into ME or ME getting worse.
Whitney Fox: One more thing I wanted to add to what Melinda said. I want long COVID patients to know that long COVID is recognized as a disability under the ADA and they have access to benefits and protections because of that. I didn't know how to advocate for those things when I first became ill, which is part of the reason why I pushed myself until I became bedbound and unable to work. But there are a lot of accommodations that could really help people at the onset of this so that it doesn't worsen or lead to things like remote work, flexible work hours, using mobility aides, noise canceling headphones, dim lighting and of course COVID mitigation measures, trying not to catch it in the first place and trying not to become reinfected, wearing masks, air filtration. Those are things that we should be fighting for and that a lot of people don't have access to short term and long term disability benefits. But using those when you need to have a prolonged period of rest to fully recover from this illness before jumping back in, I cannot recommend that enough. I wish I had done that with my onset, but like so many of us, I just I just kept pushing through until I couldn't anymore.
Sheilah Kast: Wow. Thank you both for telling us about this.
Whitney Fox: Thank you. Thank you, Sheilah.
Melinda Lipscomb: Thank you so much for having us today.
Sheilah Kast: Melinda Lipscomb and Whitney Fox are the co-chairs and co-founders of the Maryland chapter of #ME Action. We spoke in April.
Day before yesterday, August 8th, was Severe ME Day -- a day of remembrance for those who have died from ME/CFS or are experiencing acute symptoms. Since our last conversation, Melinda Lipscomb’s condition worsened and she is now suffering from Severe ME.
I’m SK. Thanks for joining us, OTR. Hope you’ll come back tomorrow.
