E104: Understanding myalgic encephomyelitis/chronic fatigue syndrome through research and personal experience with Dr. Leonard Jason

Episode 104 December 20, 2022 00:56:12
E104: Understanding myalgic encephomyelitis/chronic fatigue syndrome through research and personal experience with Dr. Leonard Jason
The POTScast
E104: Understanding myalgic encephomyelitis/chronic fatigue syndrome through research and personal experience with Dr. Leonard Jason

Dec 20 2022 | 00:56:12


Hosted By

Cathy Pederson Jill Brook

Show Notes

Dr. Leonard Jason, world renowned father of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) research, shares his very personal story with this illness along with what he has learned in his 30+ years of ME/CFS research. The energy envelope, yo-yo effect, prospective studies looking for biological markers of vulnerability, long COVID and so much more is discussed. Many in the POTS community also suffer from ME/CFS. Do you recognize yourself in this episode?

Learn more about Dr. Jason's work.

You can read the transcript for this episode here: https://tinyurl.com/potscast104

Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!

If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

View Full Transcript

Episode Transcript

E104: Understanding ME/CFS with Dr. Leonard Jason [00:00:00] Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions, and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive but thrive. This is the Standing Up to POTS podcast. [00:00:30] Dr. Cathy Pederson (Host): Hello, POTS patients and lovely people who care about POTS patients. I'm Dr. Cathy Pederson, your guest host for today. And today we have an episode of the ME/CFS Matters. Our very special guest today is Dr. Leonard Jason who is a professor of clinical and community psychology in DePaul's University College of Science and Health, and he's also the director of DePaul's Center for Community Research. A DePaul faculty member since 1975, Dr. Jason is a foremost authority on the epidemiology of chronic fatigue syndrome and myalgic encephalomyelitis. In addition, he studies recovery homes, school violence, and methods for community building. In addition, he's an editorial board member for several journals and published extensively. He is a busy guy. Dr. Jason, thank you so much for joining us today. [00:01:31] Dr. Jason (Guest): Thank you for inviting me. [00:01:33] Dr. Cathy Pederson (Host): I am unbelievably excited to have you on the show. And I don't know how many people are really familiar with ME/CFS research, and we're gonna be talking about this throughout listeners. ME stands for myalgic. encephalomyelitis, and CFS is chronic fatigue syndrome. But for people that are in the know, Dr. Jason is the guy, right? So we are absolutely thrilled to have him on the POTScast. So let me ask you, Dr. Jason, how did you become interested in this field of study in the first place? [00:02:14] Dr. Jason (Guest): Well, I got involved in the field in the late 1980s, early 1990s, and at that time I had a very personal experience. I got infected with the Epstein Barr virus, which causes mononucleosis. And mono is one of the leading causes of people not recovering and basically ending up with persisting symptoms. I would say 50 or 60% of people with ME CFS have that route in, but there's many routes in for ME/CFS that being one of them. And I got reactivated when I was in my late thirties and, and I felt pretty depleted and not well, and I actually left the university for about a year and traveled around the country and tried to figure out what had happened to me. But when I came back, I was one of the fortunate people because I had a very good track record and had brought in really millions of dollars in NIH grants in the area that I was working in, and that had to do with tobacco and school issues. So I had a welcome position to come back, even though when I came back I was really just working about an hour a day, but they welcomed me and that's unusual. Most people who have a devastating chronic illness are not welcome back and they're excluded from work settings and often from social settings. So, because I had a personal experience, I said, "well, gee, I'm pretty good at writing grants. Let me look over the literature and see what's needed." And this was 1990-91, and I found some interesting things. Number one, it seemed like it was a very rare disorder. Number two, it had a case definition that was not really well-validated or what we think of as empirical. It seemed like it didn't really have any treatments, and it seemed like also that had the reputation of being a yuppy flu disease, primarily affecting white middle class women. So I looked at these findings and I said, "gee, there's a lot of research out there that's probably not conducted too well that has all types of biases." And I thought to myself, with my limited energy and what I could make a contribution on, you know, what would be the area that would be the most important? The case definition was terrible. The name was trivializing. Treatments were not available, and there was basically tremendous lack of knowledge about etiology. So with all those areas, I selected with a colleague of mine, Judy Richmond, who's at the University of Illinois, who also was touched by this illness to say, let's focus on epidemiology. And she's an epidemiologist and I'm a community psychologist, so you kinda might wonder why did we focus on epidemiology? That's a big word, and that has to do with prevalence. And if people feel the prevalence of an illness is extremely low and it doesn't affect many people, and those that it affects primarily are people who are yuppie flu folks, then it's not gonna be taken seriously and it's probably not gonna be provided many resources. So, we spent 10 years doing basic epidemiology and that was it. We just sort of said, "we've gotta focus on this. This has to be the first area." And I might add that we had the write multiple grants to NIH and NIH stands for National Institutes of Health. And NIH basically said it really, it's ridiculous for you to study this because it's so rare. So if you basically do a community-based sample, you won't find anyone. So, there was a bias and there was studies done that were inappropriately done. And because of. that, it made it very difficult for us to get grant funding to do the study we wanted, which is really, again, it's the politics and science which are fascinating and from a psychological point of view, that's always intrigued me. So, what the CDC had done in the late 1980s and early 1990s was did a study of four cities and it had basically people that were nominated to have this illness. So, and then they would get worked up, but a physician had to say that the person had this illness. In other words, case ascertainment was the physician saying, "okay, we think they have this illness." And there's two problems with that. A lot of people don't have physicians because it's very expensive in this country. And a lot of physicians don't believe the illness exists, so why are they gonna nominate patients for the catchment study in these four areas? So they estimated that there were less than 20,000 people in the country with this illness. Well, if you have that few people, you're not gonna get a lot of attention. And at the time, the Center for Disease Control were getting 4,000 phone calls a month with people with severe fatigue, suggesting that there was something wrong with those estimates. And the self-help organization for this illness had more people than they think they were counting. So again, what happens is you have a model or paradigm and you have pieces in it that don't make sense, anomalies, and you sort of say there's something wrong with this vision. So, what we wanted to do was a community-based study where we didn't rely on physicians to nominate people. Where we could go right to the people, a random community sample, and basically sample them. And then those who had some of the key symptoms of the illness, we would bring into a medical facility and we would have them worked up medically and psychiatrically. So, it took us a while to get the grant. It wasn't easy. We had to challenge the review process at one point and said, "how can you review us without having an epidemiologist on the review committee?" So, it was a fascinating process, but eventually we got funded. We were able to do a very large scale community-based intervention study, and we were able to actually find out that rather than 20,000, closer to about 900,000 people, we thought had this illness, and the vast majority of them had never been diagnosed. They would've never known they had the illness, so they would not have been counted. So it was important to basically do a direct reach into the community. And because of that one study by the late 1990s, early two thousands, by doing one piece of good science, I was basically elevated into a credible source, and then I could launch other studies and I could have both the commitment from the federal sources for funding, which I've had funding for over 25 years from NIH, I could have commitment from the scientific community that I was a legitimate person in that area. And in the patient community, I was thought of as someone who was not trying to de-legitimize or trivialize the illness. So I was in a very unique situation that was very special and I was privileged to basically be a person who could talk to multiple parties and try to make some contributions. [00:10:19] Dr. Cathy Pederson (Host): Wow, listeners, this guy is a hero. And I have to say I love a patient advocate. You know, I think it's very difficult when you are that ill to stand up and find a way to make a difference. In my case, you know, my daughter has POTS, our listeners know that my daughter has POTS. But her very first diagnosis was actually chronic fatigue syndrome, and she was 10 years old. And it was a very similar situation to what Dr. Jason just said. They diagnosed her with mono, which is very unusual at that age, and she never got better. And she's 20 now. It's been a decade, and she is still very fatigued, brain foggy, all these things that I think that you're gonna talk about as we go through this episode. But if you don't mind, can I ask if you're feeling better now or, I know you said when you started back to work years ago, you were working an hour a day. Are you still battling symptoms? [00:11:20] Dr. Jason (Guest): I've been fortunate to basically not take the advice of most of the experts at the time, and the advice of most of the experts in the early 1990s was to do what's called cognitive behavior therapy or graded exercise. What that involves is, you know, go to the aerobics gym and work out a couple times a week. Do things to sort of push yourself activity-wise, and that will basically help clear up. And the model, cognitive behavior therapy, there's nothing wrong with that. I'm a psychologist and I believe in the model. It was inappropriately used for patients with ME/CFS because it was based on the thesis that people were phobically avoiding activity, and that because of that, they were deconditioning. So basically the whole premise was let's get people to sort of recognize there's nothing really wrong with them and to basically increase their activities regardless of symptoms. I did not endorse that model. I did not try that, and I realized that it was not gonna help me because I was pretty depleted. So rather than that, I began in 1992 and really came up with the term "energy envelope". And that term, if you can believe it, came from a patient who basically said, "I live within an energy envelope and that's how I survive." So what is an energy envelope? And to me it made perfect sense. You have a certain amount of limited energy, let's say it's available energy, and you have a certain amount of energy that you basically put out, you expend. If you expand more energy than you have available on a consistent basis, what you're ultimately doing is wearing your battery down. So, most people have a battery, say like zero to a hundred, that they're a hundred. So, they're healthy. Well, they can sort of run a marathon where they're up to 150 and takes a little while they recover, but they're fluctuating around a hundred and they can basically get a lot done. Well, a person with ME/CFS on a hundred point scale of available energy, that battery might be at a 10, might be at a 20, might be at a 30. And they got a lot to do. They've gotta clean the house. They've gotta do food shopping. They've got food preparation, they've got possibly work, taking care of family. Almost impossible to do all those things with 10% of your available energy. And if you're down to 5% or 10% , then you're actually probably close to bedbound and you're not gonna be able to do any of those things. So, if you're trying to push yourself to do more, when you basically have very little available energy and you're constantly putting more out than you have, that battery is gonna drain. And that became intuitively obvious to me, and I began actually doing research on the energy envelope, and, um, we found that if people could learn how to control how much they did, so one of the classic things that happens with ME/CFS, and I'm sure some of your audience members will relate to this, is that they sort of expend energy and then they collapse, and then they wait a period of time until they feel better, and then they have so much stuff that they haven't done. It's kinda like the yo-yo effect. They then have to basically try to get it all done, clean the house, do some shopping, do some critical things, doctor appointments, and then they crash. So, it's kind of like getting energy back, losing it. And that type pattern, every time you basically have a crash, you're basically doing some negative things to your brain, to your neurons. Every time, you know, you've heard this sort of story about alcohol and drugs and what it does to your brain. These crashes are doing the same thing, so you want to avoid them. You want to do everything you can to basically find a way of not having that. Easy to say, very difficult to do. But that was my style of basically being very careful and slowly, slowly over time, kind of building back that endurance, that stamina, that I could take more and more activity. So I have certain limitations that I live with. If I stay within those boundaries, I seem to be doing okay, and I know if I go beyond those boundaries, symptomatology will begin to occur, so I know how to cope with it. So, I'm very privileged to have been there, seen what it's like, and have, in a sense, if I could describe it, it's like walking on a pavement and there's a hole in the pavement and you fall through and you're in a different world. In that different world, you can't really explain to people who haven't been in that world. So my job has been to try to help people understand and characterize what it's like to be in that world and how different it is. And I use mostly quantitative methods, but sometimes qualitative methods, to try to help have people who don't understand that world get it. And it's been a 30, 30+ year kind of process and involves lots of different areas. But if I were to sort of bring it down to its core, that's what I'm doing. [00:17:21] Dr. Cathy Pederson (Host): Wow. That was a really elegant way to talk about the illness. We've talked about the energy envelope before. We had Dr. Byron Hyde on the show a while ago. He also took a year off and then went back to his medical practice and changed to myalgic encephalomyelitis work, and it sounds like that is the way to go, that graded exercise, that yo-yo effect that you were talking about is very difficult, but I think a lot of our listeners resonate with that and are battling that all of the time. I'm really concerned that you said it hurts the neurons. I'm a neurobiologist by trade, that's my day job, and my daughter does this. Now, she hasn't been diagnosed with ME, which maybe is a little bit stricter criteria, but she definitely seems to have that rebound fatigue, that post exertional malaise.. So now you have me worried. We've gotta work on that energy envelope. And she's a college student, so, you know, that's a tough time, too. [00:18:28] Dr. Jason (Guest): So, one of the biggest challenges with patients, whether it's a family member or your daughter, or it's a friend or someone that you, you know, is that there's always that tendency to do more, to push oneself, and that is a problem because if you're always pushing yourself and you're always exhausted, and if you're having symptoms, those symptoms aren't good and they are having effects on the body. They're affecting the immune system, they're affecting their neuroendocrine system, they're affecting the brain. And patterns get rooted. I have a feeling that, again, this is just a theory, but you know, epilepsy once was considered something very different than it is today, as a lot of illnesses have changed over time as we've gotten to know them better, but the model for epilepsy, more or less, most scientists believe it's kindling. And kindling occurs from very low levels of stimulation will get the brain excited. And then what happens is you get kindled. And that kindling is something that can slowly, very low levels of stimulation can produce that kindling effect, and that kindling effect's not good for the brain. And I think there might be something like that that's happening with this illness. And if that's the case, if you look at the MRI scanning and you look at FMRIs, MRIs, QEEGs, you know, you just see the effects on the brain and they're there. [00:19:59] Dr. Cathy Pederson (Host): Yeah. I think a lot of people are gonna be listening and taking note to these things that you're talking about. So, you've described a little bit the symptoms of this disorder in adults. You were an adult when you developed ME/CFS, but I know you published a paper in children within the last year or so, a pediatric population, and I'm wondering what kind of functional deficits or differences you see in children that have myalgic encephalomyelitis or chronic fatigue syndrome. [00:20:31] Dr. Jason (Guest): Children have sometimes more difficulties, particularly when they're very young, expressing some of the conditions that they're affecting. So one kind of problem, kind of with the child is that, or, or youth, is just being able to understand what they're going through because they don't know what they're going through and they're confused. And I might add that Court Johnson recently did, um, a survey of adults and they asked them kinda, when did you first get some of these experiences? And a large portion of that sample said when they when they were teenagers, when they were in their youth. So it's very possible that there's some early symptoms occur early on, and it's just not recognized until later. So there's the vocabulary, there's the understanding, but then you have the other situation of people in the external environment, often family, friends, school people, they don't understand what's going on. So you have someone who, let's say, was a higher achiever and doing great, and all of a sudden they're not coming to class. They're not able to be attentive. They're not feeling well, and the immediate suspicion is this is some type of school phobia and that the child is malingering. So that the child has to deal with not only the fact that they're ill, not only the fact that they're getting isolated, they're losing context, which is so important for youth. You know, when you're young, up to 11, family's really important, but as you're a teenager, the peer group becomes critically important. And if you're estranged from one or both of those groups, that's a compounding issue. Then on top of that, in the worst cases, we actually see some of these children taken away and put into psychiatric hospitals because they think that the parents are actually causing the problem. And uh, I've talked to some parents where this has actually happened and it seems like in Great Britain it has happened a number of times. And I can tell you it's amazing. This one parent said that her kid was very sick, was taken away from her and put into the hospital and they'd throw the child into deep water to kinda prove the child that they could actually paddle. And then the child sinks and they'd jump in and get the child, or they'd put the child in a wheelchair and they'd start rolling down the hallway and then they'd stop figuring the child would hold onto the wheelchair. The child goes forward flying. These are things that have been talked to me about or told me, and it's like, you know, what world are we in? You know, how could this possibly be occurring? The only way it occurs is because you have a complete misconception. So, these children and youth who have this illness are going through incredibly difficult developmental times where they're trying to figure out who they are and who they are in relationship to the family and friends, and to have an illness like this during this time is devastating. Now, the good news, I, I'm not just all gloom and doom here, I hope , um, is that, you know, the prognosis has been characterized by youth as being more positive. When they've done prospective studies of adults, they find very few seem to completely recover. Some seem to be able to cope better with it as they go older, but most of them seem to have the illness. With youth, the research has basically characterized as youth has a better chance of basically recovering. Now, David Bell who was a very famous pediatrician out of Lyndonville, New York state, who's now retired, did a study where he basically in the 1980s had a outbreak, which he followed the kids for many years. And I worked with David Bell on a follow up study of some of these youth decades later, and it was really fascinating to kind of talk to the kids and have them fill out some standardized questionnaires. That's, by the way, one of the things I, I work on is developing ways to ask questions to children and adults, and that's a whole other story which we'll talk about at some point. But what we found, which was fascinating, is that the kids said they were okay, that they were better, that they were doing all right, and yet when we took their symptomatology and compared it to their peers, they weren't. They were not doing well at all. But what happened is their social comparison had changed. They had remembered what it was like in their earlier years, how sick they were. They had gained some functioning, and now they had basically a different depiction, even though they really weren't well. They were coping, but they had significant symptomatology. So, it's fascinating in terms of how to understand the experience of youth with this illness. The study that you're talking about that we published a couple years ago was a child pediatric epidemiology study. As I said, we spent 10 years working on an adult epidemiology study that basically suggested at about now we think maybe about a million and a half people have this illness. Well, there'd never been a really good community-based epidemiology study for youth. So, we spent another 10 years working on a youth epidemiology study, which we published. And it turns out that the prevalence rates are actually, um, pretty high as well. So this is not an uncommon illness among youth. We suggested that rates might be like 0.7, a little bit less than 1%. So that means out of maybe 130 people or youth, one person might have this. And what was fascinating, again, just like with our adult study, is if you were diagnosed with it, based on us bringing you into a hospital and having some of the symptoms and having a complete medical and psychiatric examination, over 90% of those families and kids had no idea they had this illness. [00:26:55] Dr. Cathy Pederson (Host): Wow, that's amazing, and says some not very good things about our healthcare system. And so much of what you're talking about, I feel like applies directly to the POTS community. You could absolutely be using the word POTS instead of ME/CFS, as far as children being dissociated from peers, and I know my own daughter really went to high school one or two periods a day through middle school and high school. She really struggled with stamina and illness, and college has been a breath of fresh air for her, but she's had so much to sort of make up for in a way that many children don't even consider. So, so she's got the illness, but she also may have some social barriers. Her life experience is so different from those of her peers that it makes it difficult. What have you found related to quality-of-life issues then for people with ME/CFS? [00:27:54] Dr. Jason (Guest): It's very interesting, that quality of life. Let's kind of talk about reduction in functioning across kind of wide variety of areas. We generally have used something called the SF 36, which measures functionality. And when we compare individuals with ME/CFS with the variety of chronic other conditions, we find that they've had a larger, substantial reduction in functioning across a variety of social, health, occupational, areas than just about any other illness. So, it's fascinating that here you have an illness that people suggest, like you know, have been said, it's kind of like the last couple months of living with AIDS - dying. You know, that's not a very good place to be and yet our society continues to think of people with ME/CFS as having somewhat of a trivial illness. Maybe that's beginning to change with long-COVID. But I can tell you that there's still a tremendous group of healthcare workers, physicians, nurses and others who don't understand this illness, haven't been trained to understand it, it's not in their curriculum, and still tend to not differentiate those who have ME/CFS versus those who have kind of what we call ordinary fatigue. It's very different. So, all I can say is that a lot of the problems that people with POTS and people with ME/CFS have encountered, are now being encountered by people with long-COVID. We just have finished a qualitative study with five kids who have been diagnosed with long-COVID. Fascinating thing is each of these families had someone in their family who was directly connected with healthcare, either a physician and a nurse, and they said they didn't know what to do. They were basically completely bewildered by the lack of understanding what was going on with their kids. The same thing has been happening with ME/CFS and POTS for decades. [00:30:10] Dr. Cathy Pederson (Host): Right, and I think part of the problem for ME/CFS, and this is something that I know is a drum that you beat regularly, is that there's no set diagnostic criteria. In fact, there - aren't there three different bodies who have three different sets of criteria? And so, even healthcare practitioners who care, who wanna do the right thing, they may be confused about what counts as chronic fatigue syndrome and what counts as myalgic encephalomyelitis. Do you wanna talk about that and why we need a consensus statement to help folks? [00:30:48] Dr. Jason (Guest): This is actually my favorite topic. It has to do with diagnosis and case definitions. Every scientific area, every disease, has a critical task to accomplish, and that is determining who has this particular disease or syndrome and who does not. And if you get that wrong, it's like a house of cards. That foundation is basically going to create havoc in everything else that you try to do, including trying to understand etiology, trying to find biomarkers, trying to estimate prevalence, trying to do treatment, because all these things are based on identifying cases. And if you can't do that identification of cases correctly, you're in big trouble. It's actually called Criterion variance, and most causes of unreliability are due to that. That's a little bit of a technical term, but what it comes down to is if you have over 20 case definitions, there's over 20 in the ME/CFS arena, and each one has slightly different mix of symptoms, and you then have different people using different case definitions, ultimately they will have slightly different or maybe even more profoundly different patients in their labs and they're doing research on slightly different types of people. And if they don't find similar immunological findings or biological markers, then what's the conclusion? The conclusion is this is not a biological illness. This is a psychological psychiatric condition, and let's face it, forget all this biological research. It's not worth investing in this case. So that's why case definitions are critical. And in this area, we've made some profound mistakes and it's just, it's unfortunate. We have a research case definition that was developed in 1994. It's called the Fukuda criteria, and you don't have to have the core symptoms of the illness and you can have it. Does that make sense? I mean, think about it. Post-exertional malaise, unrefreshing sleep, cognitive impairment, those things are characteristic of this illness. You do not have to have any of those things, and you can meet the 1994 case definition. It's a research case definition, and then in 2003, and 2015, we developed a clinical case definition. And so the clinical case definitions are being used as research case definitions. It gets even wonkier. In 2015, the Institute of Medicine tries to come up with a consensus to get all the parties together. They invited me to be part of that group. I refused. I said, "we don't need another clinical case definition. We need a research case definition. Unless you're gonna do a research case definition, I don't want to be anything to do with this." Little did I realize what they came up with, a clinical case definition, they're now using as a research case, definition. and it gets even worse. They took out almost all exclusionary illnesses. So they basically said, "yeah, you can have this illness with these exclusionary illnesses." Well, that just muddies the pie and makes it much more harder to come up with a homogeneous group. So, I continue to work on case definitions. I do have an idea as to what could occur, and my most recent research is really talking about a narrow case definition, that's a research case definition, that's homogeneous, and a larger clinical case definition that's broader. And if you differentiate patients into those two large categories, you have tremendous power to make differences with those ill people and healthy controls. And to the extent that you want to really move the field, you wanna use a research case definition which is narrow, which excludes a lot of people, that basically gets the same people in different labs. So you basically have a case definition that identifies symptoms. The next step is you have to have questionnaires that ask the questions so that you can assess those symptoms. And the third thing is you have to have thresholds so that you can determine when a person has a burden for that particular symptom that you've assessed. If you fail in either of those three things, you create chaos for a scientific area, and that's what has been created and that's what I've been working on for 30 years. [00:35:56] Dr. Cathy Pederson (Host): So let me be sure that our listeners understand and that I understand. So, what you're saying is what we need, especially in research, is a very narrow definition of M/CFS, so that we're not confusing it with depression or with diabetes symptoms or with other things, that you're purely looking for research purposes, purely looking at those core symptoms, those people with that illness only, right? [00:36:29] Dr. Jason (Guest): Yes. [00:36:30] Dr. Cathy Pederson (Host): And when you do that, what that means is that when you do these biological markers, you can be sure that that change is because of ME, and not because of some comorbid illness that they might have. Is that correct? [00:36:47] Dr. Jason (Guest): That is correct. It gets actually even more subtle, but more nefarious. And let me kind of give an example of what has happened in one particular instance that has created ripple effects throughout the world in, it's called The PACE trial. And it was published in The Lancet, and this was a group of very distinguished psychiatrist in Great Britain. And they basically concluded that cognitive behavior therapy was pretty effective with people with ME/CFS. But then what you needed to do is say to yourself, were they differentiating people with major depressive disorder from people who have ME/CFS? The reason that differentiation is very important - if you have a purely psychiatric condition, like major depressive disorder, you're gonna have some similar symptoms. You're gonna have, in a sense, unrefreshing sleep. You're gonna have some joint aches, you're gonna have some cognitive problems, memory problems. So if you basically bring those people who have a different illness into the fold of ME/CFS, and then do an intervention that's particularly effective with people with, for example, major mental health issues, like a major depressive disorder, and a good percentage of them get better, then you assume that those who do not get better from the treatment, it's their fault. That is the message that has gone around the world such that it's not uncommon for people in primary practice to basically recommend to their ME/CFS patients, "well, why don't you just work out a couple times a week or just walk further or go to the gym?" That's not the prescription that's going to be helpful. But if you basically are mixing these two conditions together, and by the way, major depressive disorder is the second most common mental disorder only after substance use disorders. So it's frequent. Four to 5% of the population have a major depressive disorder. So, in primary care you've got lots of people coming in who have depressive disorders because of lifestyle issues. And if you see enough of those people, you just assume they all have this, and you lack the ability to differentiate the ordinary types of depressive illnesses with those who have something that's very different, much more serious, much more debilitating, and cannot be treated the same way. [00:39:28] Dr. Cathy Pederson (Host): We did an episode on this recently. Why people with POTS, and actually there are a lot of people with ME/CFS that are in that study, and they're told that they're depressed first before they get the physical diagnosis, the correct diagnosis. And part of the problem is that the somatic symptoms of depression are so similar to what we see in ME or what we see in POTS, and so they go to depression first. It's a, it's a huge problem, I think in both of our communities, and I think what we need is to write a depression scale that doesn't have any somatic symptoms on it at all, so that you're really only looking at mood, so that people that have these chronic invisible illnesses like ME/CFS and POTS aren't being elevated, having their scores over inflated by those somatic symptoms. [00:40:24] Dr. Jason (Guest): So there is a depression score, it's called the Beck Inventory, and it's possible to take the somatic symptoms out. And we've actually done research with that where we took the somatic symptoms out. And you're right, you get findings that are very different. Let me just kind of mention two quick studies. What instruments are you using if you use the DIS diagnostic interview schedule? It was never developed to measure psychiatric symptoms for medically ill population. The scan the structured clinical interview was if you use those two instruments to measure psychiatric symptoms with an ME/CFS population, one, you'll get basically exaggerated rates of mental disorders because it's the wrong instrument. But if you take the same patients and give them the appropriate psychiatric instrument, then you will get basically levels of mental health problems that are within the ordinary population. We did that study, we presented it at a conference. A couple scientists came up to me after and said, "well, that's interesting, but we've been using the DIS for years and we're gonna continue using it." It's easier. [00:41:28] Dr. Cathy Pederson (Host): That's the problem. [00:41:31] Dr. Jason (Guest): And let me kind of mention that if you basically have a group with major depressive disorder and you have a group who have ME/CFS, and you use the right instruments, you can make 100% differentiation into two different groups. So it is possible. Caroline King did her dissertation on that. It's published. And for listeners who wanna have a real simple, easy way of doing it, just ask a person with ME/CFS, what would you do tomorrow if you were well? They'll give you a list of things. Ask a person with a major depressive disorder, what would you do for your well? And they're often say they, they don't know. So, you get a different kind of anhedonia with depression you don't get with ME/CFS. The same way you could ask them if you exercise and do activity, do you feel better? The depressed person is often gonna feel a little bit better, which is the other person with ME/CFS will experience that post-exertional malaise.. Now, this isn't to say that a person with a major depressive disorder can't have also ME/CFS. But it's interesting, whenever you have a chronic illness that is so socially unrecognized you're initially traumatized by the illness and you're re-traumatized by the reaction of your family often and your work associates or your school. So of course there's gonna be people who have depression, but people can often say it happened after, and they can often differentiate. I know what's my ME/CFS, I know what's my depression. So it is possible. But I'm just saying that there is depression that is solely an effective psychiatric condition that is not ME/CFS, nor should it be confused. [00:43:18] Dr. Cathy Pederson (Host): Absolutely. Do you mind if I shift gears a little bit? All right. Let's, let's talk a little bit about long-COVD. It's in the news. I think the POTS community is welcoming way too many new members. I think the ME/CFS s community is welcoming way too many new members as a result of this virus. Do you know what the current prevalence estimates are of ME/CFS that would include these new members, these post-COVID long haulers? [00:43:50] Dr. Jason (Guest): We recently published a paper that suggested that our estimates out long-COVID would probably be about one and a half million people in the United States. With long-COVID, those numbers are probably at least double or triple, and the healthcare consequences will also be exponentially increased. And the reality is you have, again, different variants of the COVID from the initial cases to what's occurring now, it's hard to sometimes understand the effects because you have so many people who are now vaccinated or who have had the illness. But the reality is something like 60, 70% of people seem to get the infection and somehow over time they're, they're feeling pretty good. Maybe some symptoms, but they're basically functional. So something like 30 or 40% seem to continue what we call long-COVID with the long haulers. Among that group, we estimate that about maybe half of them might end up being diagnosed with ME/CFS. So, when you think about the millions of people that have an exposed to long-COVID, yeah, that the numbers are staggering. [00:45:03] Dr. Cathy Pederson (Host): That's truly terrifying to think about that kind of number all at once. The blessing of it though, or the silver lining of this horrible pandemic is that for researchers, you've got a population that you know what the cause is, they're in large numbers. You can sort of track it from the beginning, which is something we have not seen, I think, in either of our communities, in these kinds of numbers over time. So I'm wondering based on what you said a minute ago that, you know, some people are fine after they get Epstein Barr virus. You weren't, my daughter wasn't, but most people are fine. Same thing with COVID. Is there a metabolic difference that might make some people more susceptible after a viral infection like this? [00:45:54] Dr. Jason (Guest): You know, we've been trying to understand pre-illness variables and we have actually have a prospective longitudinal study going out of Northwestern, where we have 4,500 students who participate and given us blood samples, as well as filling out some questionnaires. And then we went on to sort of see some of them develop mono and some of them didn't recover. So that's what's called the prospective longitudinal study. So I think what you wanna do is kind of go back before they got precipitating event, which is the viral infection, whether it's the Epstein Barr virus or whether it's causes COVID. So, the reality is this is a very new area of trying to understand. We have some data suggesting that there might be some characteristics of individuals, and a couple of the studies that we have, we've suggested that sometimes gastrointestinal problems seem to be an earlier marker of what happens. And then when the event occurs, those markers even become more pronounced. But that later on, those markers tend to disappear, and what you get is other markers like post-exertional malaise. So it's really kind of a fascinating, very complex story. But yes, you know, we do know that women tend to get both ME/CFS and long-COVID more frequently than men. So, that's one kind of factor. We know people who are older. certainly with long-COVID, are more likely to end up long haulers, or even kind of mortality, and certainly those people who have preexisting illnesses, whether it's their immune system has somehow been affected prior to the insult with the virus. So yes, we do have some of those markers, but it's still pretty early for us to be able to unravel. I might add that, you know, we work with computer science folks at the DePaul University, Jacob first working with two of his students this summer. It's really kind of fascinating that we have data on a sample of about 300 people with long-COVID, and during the first two weeks we had them fill out our, what's called DePaul symptom questionnaire. And then six months later, and we were looking at, well, can we predict at couple weeks of the illness, is there something that tips us off to who's going to recover and develop ME/CFS versus not? And we could do it with basically something like 95% sensitivity, specificity, and accuracy. And that is with a 54 item questionnaire, but even if we got it down to a few items, it turns out that there were eight items that were pretty good. Of those eight items, four of them - half of those items - involve post-exertional exertional malaise. And by the way, you're the first group to hear these results. [Laughs] [00:48:52] Dr. Cathy Pederson (Host): All right! That's super exciting. Hot off the press! [00:48:55] Dr. Jason (Guest): It's actually just being written up. [00:48:58] Dr. Cathy Pederson (Host): That's amazing. So the first step is to identify those markers, right? But the hope is that if you identified people in the future, , maybe you could do something about it? [00:49:09] Dr. Jason (Guest): Yeah. [00:49:10] Dr. Cathy Pederson (Host): Before they caught the virus or as they catch the virus, you do something to try to prevent this longer illness? [00:49:16] Dr. Jason (Guest): Well, I think that there's some people that are gonna be higher risk for not recovering. And whether they're higher risk or not higher risk, it's really critical that when you have non recovery occurring after a couple weeks of COVID, you want to do some things for that person. And the thing that you wanna be careful about is, as we've learned with ME/CFS and, and by the way, there's all types of lessons with POTS and ME/CFS that can extend to the long-COVID arena. And one thing we've learned is if the system is under duress, you don't want to continue to push it and push it. Just think about Africa. You know, a lion gets mauled in a fight with another lion. It goes into the bushes and it rests for two or three days. It doesn't eat, it just rests. It lets its body recover before it basically goes on with this travels. There's something about our natural biological systems that needs to respect some of these symptoms. And if we listen to them and if we don't do things that continue to aggravate the situation and if we focus on trying to do some of the symptoms in a very specific way, we can actually, I think, do a lot to prevent these types of long-COVID situations. [00:50:36] Dr. Cathy Pederson (Host): Wow. That's the dream, is that we'd stop others , we prevent them from joining our communities somehow. Yeah. We'd love a cure for those of us that are suffering now and we would love to prevent others from joining our ranks, for sure. I know in the POTS community, long-COVID has been sort of a blessing because the government's paying attention. You mentioned the National Institutes of Health earlier. I know that there's funding now for long-COVID, which includes POTS and ME/CFS. What do you think about the fact that COVID is being so heavily funded, but we still are not going after the basic science for myalgic encephalomyelitis and chronic fatigue syndrome? You know, we're not funding that basic research. And why is it so hard to get people to, to understand that this is not a yuppie flu? This is not just being tired after a long day of work? [00:51:33] Dr. Jason (Guest): I can assure you that funding at NIH remains at a very low level for these types of illnesses. And I think there's some people at NIH that are doing everything they can, but it's difficult because you have a battle of, in a sense, ME/CFS and POTS has variety of different kind of variations of why people came into that illness and that creates difficulties for science. And also, the people have had it for varying periods of time and that creates difficulties for science, whereas with long-COVID, you can sort of say, here's an episode, it's a viral attack, and now we can follow it over time. It's a very specific precipitant. So, there's a lot more interest in long-COVID, but let's face it, there are hundreds of thousands of people who are very sick, who require better treatment, better research, more research for their conditions. So we need to remain vigilant and try to, and there's some very good ME/CFS organizations, ME Action South ME/CFS Initiative and others that are really hammering away at trying to get them into the pie. I'm one of those people that, from a scientific point of view, is making arguments saying, "Hey, look, if you create this, Questionnaire, let's make sure we have questions in it that at least can tap ME/CFS," because you want to, at least if people have long-COVID, you want to find out whether or not they also have ME/CFS and you need the right questions to do that. And also, let's make sure we have comparison groups where we not just are looking at long-COVID, we also have ME/CFS groups. And I am an advocate for those things, working hard on committees within recover to try to advocate for that scientific position. And I must say that the patient activist groups are very much for this type of venue. [00:53:45] Dr. Cathy Pederson (Host): Yeah. I have to say, I think in both of our communities, a lot of the research has actually been done by these nonprofit organizations, so they're asking folks for money. I know Standing Up to POTS has a research fund and we give grants out, and I think a lot of these communities are doing it because the government is not, because the National Institute of Health is not doing that. And so, I hope that this interest in long-COVID will bring some answers to both of our communities that are generalizable, that we can use, you know, if there's something post-infectious that they're finding with ME and POTS and in long-COVID that maybe it generalizes to Epstein Barr, that it will help you, that it will help my daughter, that it will help so many other folks in the community. For POTS, 40% of POTS patients think that it was triggered by infection. There's so much work still to be done, and I really think that you are a hero of the movement, and I so appreciate that you used part of your energy envelope on us today. You were so articulate and I think expressed so well what it feels like to have myalgic encephalomyelitis and, and chronic fatigue syndrome. So thank you so, so much for being with us today. [00:55:08] Dr. Jason (Guest): And thank you for the invitation. I feel very privileged to be able to offer some help. [00:55:15] Dr. Cathy Pederson (Host): Okay, listeners, we hope that you enjoyed this discussion. We'll be back with you next week. Until then, thank you for listening. Remember, you are not alone, and please join us again soon. [00:55:29] Announcer: As a reminder, anything you hear on this podcast is not medical advice. Consult your healthcare team about what's right for you. This show is a production of Standing Up to POTS, which is a 501(c)(3) non-profit organization. You can send us feedback or make a tax-deductible donation at www.StandingUptoPOTS.org. You can also engage with us on social media at the handle, @standinguptopots. If you like what you heard today, please consider subscribing to our podcast and sharing it with your friends and family. You can find us wherever you get your podcasts or at www.thepotscast.com. Thanks for listening. © 2022 Standing Up to POTS, Inc. All rights reserved. [Transcriber’s note: if you would like a copy of this transcript or the transcript for any episode of the POTScast, please send an email to [email protected]].

Other Episodes

Episode 45

March 05, 2022 00:40:03
Episode Cover

E45: Diary with Russell from Washington

Meet Russell, a rockclimber from Washington who developed POTS as a teen and continues to battle his way back. His main symptoms are dizziness...


Episode 71

July 02, 2022 00:46:42
Episode Cover

E71: Diane from Washington

Diane is a retired dietician who shares her journey with POTS as well as her knowledge of the MTHFR gene mutations and nutritional changes...


Episode 196

March 05, 2024 00:22:02
Episode Cover

E196:Jolie is Miss Chattanooga, spreading awareness of POTS at the Miss Tennesee Pageant

Jolie was first featured in episode 160, and she's back to talk about how she's doing, how she successfully manages her POTS, and some...