Episode 129: The Power of Championing For Your Own Health
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In this episode, I’m joined by Dr. Nancy Klimas, the Director of the Institute for Neuro-Immune Medicine at Nova Southeastern University, and Cort Johnson, founder of Health Rising.
Dr. Klimas shares insights on how early outbreaks shaped the study of ME/CFS, while Cort discusses the role of advocacy and research in bringing these conditions to light. Together, they emphasize the need for effective self-advocacy and the critical role of knowledgeable healthcare providers in managing these complex illnesses.
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Nancy Klimas, M.D., is the Director of the Institute for Neuro-Immune Medicine where she directs a group of remarkable interdisciplinary scientists and clinicians. They collaborate to discover innovative strategies for treating and preventing chronic illnesses, while also focusing on training the next generation of clinicians and scientists. With 40 years of professional experience, Dr. Nancy Klimas is internationally recognized for her work in multi-symptom disorders, including ME/CFS, GWI, fibromyalgia, and Long COVID.
LinkedIn: https://www.linkedin.com/in/nancy-klimas-49255178/
Instagram: https://instagram.com/nancyklimas
Cort Johnson is the founder of Health Rising, a leading website covering chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) research and treatment. Despite battling ME/CFS/FM since the 1980s, Cort earned degrees in Philosophy and Environmental Studies. Dissatisfied with online ME/CFS resources, he launched Phoenix Rising in 2004, and later founding Health Rising in 2012 to expand to FM. Cort has authored over a thousand blogs, earning recognition from patients, supporters, doctors, and researchers. He's been honored by Prohealth and IACFS/ME. Cort currently travels the western U.S. with his dogs while advocating for ME/CFS and FM awareness.
Website: https://www.healthrising.org/about-us/cort-johnson/
LinkedIn: https://www.linkedin.com/in/cort-johnson-53097213/
Facebook: https://www.facebook.com/cort.johnson.9/
Transcript Below:
Haylie Pomroy: I'm Haylie Pomroy, #1 New York Times bestselling author of The Fast Metabolism Diet and the Assistant Director of the Integrative Medicine Program for the Institute for Neuro-Immune Medicine. Today we are going to be talking about ME/CFS. I have some very incredible guests here with me today. First and foremost, I have the Dr. Nancy Klimas. She is the Director of the Institute for Neuro-Immune Medicine at NSU. She is also the Director of Environmental Medicine Research at the Miami VAMC GRECC, we are so fortunate to be joined with Cort Johnson. Cort is the Director and Founder of Health Rising. This is a website dedicated to covering the latest research and treatment possibilities for chronic fatigue syndrome (ME/CFS), and fibromyalgia. Cort and Dr. Klimas, thank you both so much for taking the time to be here with me today.
Cort Johnson: Thank you.
Dr. Nancy Klimas: Great to be here.
Haylie Pomroy: It's going to be a good conversation on a big subject. Cort, I'm going to start with you. How did you become connected with the Institute?
Cort Johnson: I’ve been connected with Nancy for a long time. Way before the institute was developed. That was the culmination of all her work. But I've been following Nancy since the late 80s or early 90s.
Dr. Nancy Klimas: Late 80s, early 90s, really from very much the beginning. We met each other at the very first meeting that I can recall that happened in our field.
Cort Johnson: That's the thing about Nancy. She's there from the beginning. When ME/CFS craft kicks in, people just really didn't study it.
Haylie Pomroy: When you say from the beginning, is that from when we started to identify this as an actual disease process or a disorder? Is that what you mean when you say from the beginning?
Cort Johnson: That's an interesting question because there really was a beginning for us. And that really had to do with, these outbreaks that occurred across the country that got a lot of media attention. Chronic fatigue syndrome has been known through many names, throughout its history, it's been with us probably forever. But it really gained attention in the US, I guess, in the mid-80s or early 90s. I, for instance, got chronic fatigue syndrome around 1980 and there was no chronic fatigue syndrome back then. I guess we had really a confluence of interesting outbreaks that the media covered and it started. They really started to research.
Haylie Pomroy: Was there a trigger in conversation or was there some sort of infectious trigger? When you say outbreak, do you mean where we started to have a more intelligent dialog? Give me a little bit of color on that.
Cort Johnson: It was funny because across the country, in Nevada, in New York, and I think there was 1 in Florida. Whether or not these things were happening before, suddenly, at least doctors became aware that people were coming down with this chronic illness after an infection. And it really seemed like something was sweeping across the country, and nobody's ever identified that. Nancy would probably have some ideas on this. Whether this was something that was always happening, our picture is it’s always happening. We certainly know that ME/CFS was always happening because we know that common pathogens can trigger it. It's always been happening. But there seem to be these outbreaks, there's any kind village outbreak where this little tourist town in Nevada, scores of people came down with it.
Haylie Pomroy: My brain goes, was there something environmental that was a trigger there? When we see the individuals in the Gulf War time period, we know that there was a big identifiable environmental insult right to the body. I'm fascinated by these pockets or these pods of this happening. Dr. Klimas when they first started talking about this or when you said, in the beginning, were the patients discounted? Was their good diagnostic abilities?
Dr. Nancy Klimas: Cort would be an example of somebody who didn't get a diagnosis for at least a decade after he became ill because in 1980 we didn't even have a case definition or a name. There had been historically what’s quite alluding to us, Icelandic disease, all these little episodes of post-infectious, but sometimes post-war or major toxic exposure. Episodes were people remained ill when everyone else recovered and often they were given their own little name. In the 80s, there were these episodes that quite alluded to with different towns that had known, like influenza epidemic or something that ran through the town, and then all these people that remained afterward. It caught enough interest that the CDC And Tony Komaroff, who we hope to have a guest soon on our podcast, went to investigate to see what was going on at Incline Village. They showed up, took samples, and went back to their labs to try to figure things out. And that was sort of the beginning of paying attention. From my perspective, it happened right at the same time I started seeing my first patients and they did not have names. I was in the same window of time, starting to see clusters of patients coming through my clinic. Not necessarily because we had an epidemic in Miami, but because I was an immunologist and the patients were hunting for answers. So they came to see me thinking it was something in their immune system. They identified me, it wasn't me identifying this weird thing going on. Within a few months, I got my immunology paper out a few months before Dr. Levi got his out at UCSF. He teased me about it because we've had the same findings, which there was something wrong with the part of the immune system that could clear an infection.
Haylie Pomroy: Can I just punctuate that for a minute? When was that paper?
Dr. Nancy Klimas: 1989 to 1991, We were publishing our first things. 1991, I think was the paper he was alluding to.
Haylie Pomroy: Identity identifying that there's something wrong with the immune system that allows the body to clear this infection or episode.
Dr. Nancy Klimas: It vigorously attacks an infection when it comes on board. Interesting observation. But that made a bunch of people who were looking at different clusters get together informally and say, we're doing something, and then it was really Tony Komaroff and Dr. Blackshear, who was at the NIH at the time and said, we need to have a meeting and name this thing and create a case definition. They really started a way that a field could start by at least identifying what we thought we were looking at in a way that we could all begin to do research with a common diagnosis.
Haylie Pomroy: Cort and Dr. Klimas, I'm sitting here just going, we're talking 34 plus years ago, and we still, in our institute, see people come in 10, 20 doctors later that haven't had an adequate diagnosis or even are believed. It just sunk in for a minute.
Dr. Nancy Klimas: Cort would tell you because he's the one that goaded me all the time. One of the most frustrating things early on was the split in the type of people doing the work that were between, essentially, psychosomatic medicine and biologic underpinnings of an illness more in the frame of the way I might have framed it. And we were set against each other. We were often actually debating each other on stages. I think we wasted 10 long years of research just to refute that this wasn’t “all in your head.” It was really a hard time. And eventually, we got past that. We're way past that now. We've all agreed, let's go on and move on. I remember Cort challenging me as an investigator and as a clinician to be an advocate. I was saying that doctors are supposed to be advocates. Scientists are supposed to be able to stand back, be impartial, and judge the data. When you start into advocacy, you might not be able to do your job as an investigator. Then eventually he convinced me that the only people that could move us past this spot were the academic community, the academic and clinical community that had to step up and do something. When we formed our professional organization, the IACFS, we were supposed to be promoting research, clinical guidelines, that kind of thing. But somewhere along the way, we had this amazing event happen where we recognized our power as clinicians and as experts to make a difference. It actually happened in Norway. Cort, you might remember this, but in Norway, we were so broke as an organization that if they paid us to go somewhere, we'd say, you pay us to come, we'll put on a conference while we're there, but we need to meet face to face. We need a conference room, basically, we would go anywhere in the world just to pay us to come. Not individually. Just the organization needs a place to meet and someone to pay our expenses to get there so we can have a board meeting. We were doing that in Norway, and the Minister of Health came to the meeting and she completely did a 180 for their country. After this meeting she said, oh my God, it's real, it's biologic. We've been putting these people in psych units, we're going to stop. Today we were in our board meeting and I was probably the most advocacy-minded person on the board at the time and I'm saying, “See? It's knowledge that changes things.” We're knowledgeable and we have to stand up with our knowledge and make policy changes. This will change lives more than anything else we can do in our lifetime. Cort was the guy standing behind me in the years before that saying, you're not loud enough. You're not taking a big enough stand. Get up on that limb. Why aren't you out there talking more? And I'm like, why am I not? He made me think. How do you balance the balance of being a good scientist, a good clinician, and the best patient advocate you can be? And there is a way to do that.
Haylie Pomroy: And a person that disseminates science, too. Isn't hoarding the data. That's heartbreaking when we see that. Cort, I keep hearing from Dr. Klimas that you were driving. What inspired you?
Dr. Nancy Klimas: He’s a pushy guy!
Haylie Pomroy: Where does it come from? We don't do these things for no reason. What was the motivation? What's the inspiration? What drives you? Because it's a lot of energy and focus to work on your own health journey. Why were you so vested in the advocacy being there?
Cort Johnson: How can you not? This thing totally changed my life. If not this, then what? It just seems like a natural extension, and I've always been really interested in research and everything. I’m also fascinated in the advocacy aspect and organizational aspect. With regards to the NIH and why we're not getting the funding we're not getting and what the block is there.
Haylie Pomroy: When did you start Health Rising? When did you start the website?
Cort Johnson: I first started a website called Phoenix Rising, I think it was in the mid-90s.
Haylie Pomroy: At that point, had you had a diagnosis or were you working through this syndrome and not identified?
Cort Johnson: No. Actually, in the mid-90s I was running away from the diagnosis. I had heard about chronic fatigue syndrome. I heard it was a dead end, and I didn't know any associated with anything like that. It's a little sketchy for me at the time, but at some point I got it and I've always been really interested in research, so I'm looking all over the place, all over the internet for the answers and I'm seeing the same simple explanations or overview showing up everywhere and not really getting anywhere. I started a website in early 2000s. It's a front-page website if you remember. I just started reviewing the literature and trying to translate the literature so I can understand it, so other people can understand it. Advocacy is just key. I really wonder whether the development of the IACFS and me and this real, rigorous, professional scientific outlook, we're going to have conferences, we're going to have a professional research organization. I wonder if that's really what's held us apart from diseases like fibromyalgia. They don't have anything like that. We have centers, we have Nancy’s Center. There are a few other centers. We have some private funders, and even despite all the fatigue and all that, it's a very active community. It's really a very active community.
Haylie Pomroy: And a lot of brilliant, powerful people. I do agree with you that organizing, there's power in numbers and there's effectiveness in organizing. I think of all the people that have started to listen to this podcast and they're maybe starting to identify with some of the symptom profiles or they've been rejected or turned away or not getting things. I'd love to hear from both of you. Someone that feels like they need to seek possibly a diagnosis, and we're seeing with Long COVID, they’re saying something had changed in my body, something the way that my body responds, the way that my body reacts. What would you suggest that they do, what's their next step to become part of the organization, to talk to their doctor? What's the next step for them?
Dr. Nancy Klimas: I'm going to say that as much as I hate Dr. Google, and I do, there are very good places using the internet to learn as much as you can, and Cort’s website is perhaps the best source I know of well-written, crystallized up to date knowledge on what the illness is like and where the science stands and what we've learned, the things people have tried to do or that are evidence-based, things that are experiential. That's why I was so keen to have him on our podcast, just because I don't know anybody else that can take really complicated concepts and make them understandable and clear, and then get them down in words, on paper, or on the internet, or screen.
Haylie Pomroy: Cort is that healthrising.com, what's the website?
Cort Johnson: healthrising.org
Haylie Pomroy: healthrising.org Dr. Klimas I love the way you said that because oftentimes there's a big divide between, even the knowledge base if we have a physician or practitioner that has this knowledge base and accessibility to the patient and individuals like yourself that bridge the gap, that help people like me understand what's going on in the body. And I think also empathize because you've been in their shoes, seeking support and help. Cort, I want to ask you this question, which is what does self-advocacy look like in your mind?
Dr. Nancy Klimas: That's a good question. I love that.
Cort Johnson: Self-advocacy. That's a very interesting question. Part of it is going for yourself that this disease is real and serious and just knowing. Knowing that there's nothing wrong with you. That something has happened to your body and even though you can't participate in all these things that you wanted to participate in, it's not a personal flaw. It's just something that's happened and this is the path you're on right now. This is your path, make the best of it. Part of self-advocacy is simply making sure that you take care of yourself. That you put that first and foremost. Then self-advocacy is also being a stand for this disease with your doctor, that this is a real disease and a lot of doctors are getting that now. There is a lot of information on Health Rising about fibromyalgia and chronic fatigue syndrome. We have a page called “How to prove that your illness is not depression?” or “How to prove that fibromyalgia is a serious disease?” And we have a list of really neat… And when you're done with that, you get...
Haylie Pomroy: You have the right verbiage. I read something the other day that said, you're not looking for a practitioner that believes you, you're looking for a practitioner that's a fierce advocate for your truth. If you're having to convince someone, it's not a teammate that you're looking for, You're looking for someone that we knew and that's what's really unique about the institute. Being outside in my own health struggles, in dark times when you said 10 years of research was lost debating this, I got chills because I can tell you so much. Me getting help was lost in all the effort that I made to get somebody to believe that I needed help. And I think of all that time, work, effort, and googling to say I have enough evidence that shows that my concerns are valid, and you should believe me, which is just crazy.
Dr. Nancy Klimas: That's so terrible.
Haylie Pomroy: But it's so true. And how much energy, effort, time, money, and resources it takes just to get you to the threshold of beginning to be on the journey of either creating a new homeostasis or towards health. Dr. Klimas, what does self-advocacy look like to you?
Dr. Nancy Klimas: First being willing to fire a doctor. That's really important.
Cort Johnson: Yes, yes.
Haylie Pomroy: Dr. Klimas, my daughter was in the hospital and you told me to fire my doctor, or you gave me permission to fire my doctor. I, on behalf of this mama, I cannot thank you enough. And boy, did I get a gem of a doctor afterward. I mean, she was lovely, but I was afraid and I'm pretty ornery. Thank you for saying that to all of us.
Dr. Nancy Klimas: You are already sick. You have an illness that saps you of your energy, you've got about 15-20 minutes. If you're good at concentration, you shouldn't have to spend it fighting with your doctor. Doctors are supposed to have listening skills and compassion and all those things, and you're not likely to change the inner workings of a person if they're not showing their compassion, you're not going to make them get compassionate. You can't. That's not your power. Lose the ones that don't make you feel like you're on a path towards getting better. What's the point of that? You just spending money and getting big, expensive workups and it's not moving in. That's one thing. Another thing is to learn as much as you can. As irritating as it is to have a patient come in with 12 pages, single-spaced stuff, that they want you to read before you even get to talk. At least in some way, there’s learning something. I would be happy to do a whole podcast on how to use your doctor's time wisely. But at least I know that when I'm seeing someone that’s, I have this patient with Long COVID right now that's really challenging me, and I think I'm on top of things. Boy, do I know stuff, he knows stuff right before it's published. I'm like, wait a minute. No fear. You can't hold me accountable for science that hasn't been presented yet.
Haylie Pomroy: That's exciting though.
Dr. Nancy Klimas: He really challenges me and I now understand he’s advocating for his son, and he's amazing. Anyway, the point is to get rid of people that aren’t helping you and then building your team in a sensible way. One of the things I find, because there are only so many ME/CFS experts or Long COVID experts or the immunotoxicology experts in the country, in terms of lots of clinical expertise, I'm going to say you probably have less than 200 people like that in the whole world, trying to take care of an epidemic of post-viral illness, or post-environmental toxic illness. We should have lots more. But there are people who are solidly trained in it, and those are integrative medicine doctors. They go through a lot of training to try to understand how everything gets together. And you can find integrative medicine doctors, they are everywhere. I usually say, let's start by getting your quarterback to be the integrative medicine doctor. And the other is, if you can find one or if you have a primary care doctor that you love, then great, stick with them. If somebody is listening to you and learning, and learning on your journey, you got a great doctor. You don't have to change that. But if you are looking fresh for somebody because you just figured that one wasn’t helping, then look to somebody that's got some decent education on how complicated illnesses are glued together and how to unravel them.
Cort Johnson: Nancy said just reminded me something about having effective doctor appointments. One thing I would recommend for somebody who's new to this, to anybody actually, is a podcast called Unraveled. It's produced by Dr. Ruhi and Dr. Kaufmann, they’re 2 ME/CFS experts, and just talk about everything. I think they've done like 40 or 50 episodes. There's just a wealth of information on there. That's a great place to go.
Haylie Pomroy: In our community, we do this program that we call Request for Care. We help people get organized before their doctor's appointment if they want to have, like you said, Dr. Klimas, a note, volumes of data behind it, how to distill that data, and create a cover letter that pulls out the salient points so that you can maximize your visit. And we take our community, we took about 2300 people just recently through creating a request for care before they go in, whether it's a physical or something grander than that. But both of you brought up something, I'm hoping this is something that good that came out of the pandemic. I think that integrative medicine has been shoved to the forefront because of the possibility for the complexity of treatment in the complexity of what we're seeing right now happening in the bodies. I think we used to take a more reductionistic approach or maybe systems approach, like cardiology, or orthopedics, and say, we'll fix a bone or we'll fix the heart. But in these complex diseases like ME/CFS and Long COVID, the complexity of what's happening in the body is requiring complexity of care. There's this converging where something's got to change. We've got to treat the patient more. I don't know if I use the word holistically, but more whole body at least, or all systems on board in this. I want to ask both of you. I know you saw it coming with COVID or with this particular.
Dr. Nancy Klimas: Oh yeah. I was like oh my god, it's going to hit as big time. And look what happened.
Haylie Pomroy: I love your response. You didn't know I was going to ask you that question.
Dr. Nancy Klimas: I was just looking at our team and we are already booked and we're about to…
Haylie Pomroy: Get hammered.
Dr. Nancy Klimas: 5 or 10 times greater volume than we’re already managing.
Haylie Pomroy: And this whole thing about, in 10 to 14 days, as long as you survive it, you're going to be done. I had the opportunity to watch everybody at the Institute and watching you guys go… What did we learn with ME/CFS that just allowed us to catapult to the forefront with our Long COVID patients?
Cort Johnson: I don't know what allowed us to catapult. I think the ME/CFS, for me it was just amazing because when COVID hit, we all knew that Long COVID was coming.
Haylie Pomroy: But I hear you say that. But so many people said, no, what are you talking about? I'm out here, you guys all saw it crystal clear.
Cort Johnson: There's no doubt. You never know until you know but it was a big infectious illness, and ME/CFS has always been associated as a post-infectious illness, it just followed right along. It just made so much sense. But my question was how similar is it going to end up being in the research field? Are the findings going to line up? Is it going to be different because it's coronavirus? Are things going to end up looking really different? That wouldn't be so good for ME/CFS. We'd really like to have them be very similar because we want to get, we want to learn from this. Really astonishing and really made me very happy is just how similar these diseases have shown up to be. I mean from herpes virus reactivation to metabolic problems to blood vessel problems, even to the brain. Almost couldn't have had it any better, any closer. I think the Long COVID field is still really catching up to the ME/CFS field. I think we're way ahead in a lot of areas.
Haylie Pomroy: I think you guys will reach down and pull people up through research because there are people that are just starting to say, there seems to be some sort of an inflammatory or neuroinflammatory response or an immune modulation response. And I watch you guys all go, “Duh, yeah?”.
Cort Johnson: I'm sure there are some differences. But for me, it's been really nice to see the large similarities which makes me hope that it will help us understand Long COVID. But the one thing that I've been surprised at is that I thought, because ME/CFS was quickly identified with Long COVID, I thought that would lead to more funding at the NIH, and it just hasn't. I really don't understand that.
Dr. Nancy Klimas: I thought the same thing. The recovery network, which is a $1.15 billion and $500 million new money coming spent for Long COVID, which is, to be real in ME/CFS, our average year for a long time was $3 million to $6 million of funding for the entire field. The big year when they brought up the centers, we might have reached about, we've had a maximum of about $20 million a year in any given year of funding. And then along comes Long COVID with $1.5 billion in committed funds and there's a tremendous amount of work, which is so exciting. For the longest time, we've been saying to the NIH, if you put set aside money, they will come. And they said, no, there’s money there, just apply, you'll get it. And it's just not been true. And a few times when there’s been set aside, if there's a center award being out, they’ll say here's an extra $3 million, they get a lot more applications when there's the perception by the investigators that they might get funded. The recovery network, there wasn't a large university in the country that was left out of that application. 200 applications that involved multiple institutions went at the recovery network funds. 248, I think? We’re like how many large institutions with medical schools are there? They all went in. Everybody went in for a recovery network application. Think about what that means to that new money, a lot of money. It just swept a vast number of new investigators that weren't there before. Now, I will say, as one of the old investigators, that left us out because there was a decision not to compare ME/CFS to Long COVID in that money. Those of us that put applications in that had said, what we have to offer is all these experience and data and biorepositories and all this stuff that we know about ME/CFS, wouldn't you like to have that compared to other illnesses? And they said we can't compare them. Why? Duration of illness. These people with Long COVID, your patients for Long COVID, we can't come in with ME/CFS they have to be pre-2020. Already they have at least 3 or 4 years of illness, how are we going to compare them to someone with only 1 or 2 years of illness? And that was a decision made that we were not going to be allowed in or at least in that first sweep. I think that was perhaps an idea that it was going to go away, that Long COVID was going to burn out, and these people are going to get better and they're going to be different. Now, it's 2024, and 2020 people are still sick. Four years of illness, now they are long duration illness. And all of a sudden there's actually quite a bit more interest in comparing to ME/CFS. We're doing a Long COVID to ME/CFS that's funded by the CDC, not by the NIH. It's a good study intended to compare ME/CFS to Long COVID. That is its intent, its main hypothesis. What are the similarities and differences? But it took the CDC actually to fund that one. We had applied through the recovery network and that was what our…
Cort Johnson: That's an example of advocacy though. That 1.15 billion came from Congress, did not come from the NIH, came from a congressman who had, I've heard that he played a big role. He has a form of Long COVID.
Dr. Nancy Klimas: Knowing someone that has ME/CFS, actually it’s an interesting study, this was a Lenny Jason study that said, when you're looking for a doctor that knows something about ME/CFS, they didn't learn at medical school. They learned it because they have a family member with ME/CFS. They called all the doctors to see who knew anything, and then people who knew anything, or the people who actually had a family member.
Haylie Pomroy: That had to go back to school.
Dr. Nancy Klimas: No. Then they figure it out. And Long COVID, the same way when you talk about the congressman and funding, I remember very early, Cort you might remember this, remember Hyde and Kennedy, the two people that probably shouldn't be in the same elevator together. Senator Kennedy.
Cort Johnson: Byron Hyde?
Dr. Nancy Klimas: No, Byron Hyde, the Congress Hyde. The most right-wing on one side and Kennedy the most left-wing on the other side co-sponsored the bill for ME/CFS because they had staff members who have family members. In some way or other, they were connected. And we had a long time ago that was co-sponsored by Biden and Kennedy in Congress. And I said, well, the one thing that brings bipartisan support to anything, it's going to be around health and medicine. Right now it's about the hardest time you can imagine to get something, seen by both sides of the House or the Senate right now. But they are doing things, in bipartisan ways, for veterans with environmental toxic, the past cap, that was huge and they had to get that through. This recovery network works the same way. To get $1.15 billion into a budget to go after an illness in its earliest years.
Haylie Pomroy: Cort, on healthrising.org I know that there's a lot of information and data. Is there a way that people can take an action step and become involved in advocacy?
Cort Johnson: We frequently have, we're like a funnel, we promote the sovereignty initiative, which works in the legislative sphere. Which is where you can really get the most done. Actually this week, we’re participating in Advocacy Week. Anybody with Long COVID who's listening? There's a Long COVID moonshot bill that's just been coming out of Bernie Sanders's office.
Haylie Pomroy: A Long COVID what?
Cort Johnson: Moonshot. I think that’s asking for $1 billion a year in funding. So far as I know, Long COVID still does not, it's a problem with these diseases they affect so many different systems that they don't know where to put them. ME/CFS does not have a home in NIH, it's not affiliated with an institute and neither is Long COVID. The idea is to build a Post-infectious Disease Institute, where we can study ME/CFS, Long COVID, POTS, and all these diseases. If you think about it, you don't stay diabetes across 15 or 16 different institutes or heart disease, you have one institute. But that's how ME/CFS has been studied, and these other diseases, post Lyme disease. The Sanders bill from the ME/CFS perspective is flawed in that it does not include anything other than Long COVID. Does not include any other post-infectious diseases. We're going to be pushing to…
Haylie Pomroy: To shift that. Are you finding that individuals that had any ME/CFS prior to COVID that then became categorized in the Long COVID category are able to get Long COVID support or research, or are they taking it out of those research opportunities because they were previously diagnosed with ME/CFS?
Cort Johnson: No, they're Kryptonite or whatever. They need a clean COVID diagnosis. That's all they want.
Haylie Pomroy: Yeah, that's been really frustrating for me to watch because we've seen people that were doing well or doing better that get, I don't know exactly the right terminology, you both will have to help me, but get a new infection. It reactivates a historical infection or a co-infection. And they're back to square one or square zero and they can't get the support from. It's like, oh, you already had that before. You were just having a couple of good moments and we're not going to classify it over in here. That's hard for me to watch in our chat rooms, in our communities.
Cort Johnson: One great thing about the recovery network is they opened up all these Long COVID clinics. Nancy was talking about just the sheer mass of doctors who now know about Long COVID and therefore must know something about ME/CFS.
Haylie Pomroy: It took 10 years. I wrote this down, 10 years of fighting over whether to believe the post-viral chronic illness tissue wasn't psychosomatic. It took 10 years, long before COVID, our pandemic hit, of debating whether ME/CFS was true or not or biological or not, that fight was brought right to the doorstep when we had the pandemic. I feel like some of that's why they're able to just create these treatment centers because there isn't then, I don't know, it’s still going on out there. There isn't it's psychosomatic and it's just all in your head and you need to get more rest and exercise more. At least when we're out there talking, we hear a lot about that. Which leads me to my last question and I would love to hear from each of you. Why do you still feel like so many patients are misunderstood or misdiagnosed? Why is this still happening? The research is solid.
Cort Johnson: That's a great question. Isn't that funny? Nancy was talking about, it took ten years in the research field to stop focusing on psychosomatic stuff and move to biology. I think doctors are another case entirely. I just think it's been, my sense is, that it's been much slower for doctors to get that this is a real illness. They're probably very busy, it's hard to keep up with everything. They weren't taught about ME/CFS. Whatever they were taught about, it wasn't good. They don't have good treatment options. They don't like to, I'm sure it's difficult. With all these different symptoms.
Haylie Pomroy: There's a super straight line between high cholesterol and a statin or elevated hemoglobin A1C and metformin. You're right, I love that point. It's not a straight line. It takes a ton of creativity and a ton of work.
Cort Johnson: It takes a lot of work. As Nancy knows, it takes a lot of work to really properly evaluate an ME/CFS patient, you can't just do a lab test, I mean, there are many lab tests you can do, but there's not a definitive lab test.
Haylie Pomroy: I love what you said. I don't feel like it gives an excuse for a physician or a practitioner not heroically coming and throwing their cape on and identifying and validating. That's what I want. But it gives us, as the patient population, a little bit of understanding, and then we can become better advocates and better communicators. Dr. Klimas, will you add to that? We have tears in the clinic when you guys start pulling blood because people say what, you're going to actually do something from a biology perspective and actually ask my body if it's okay?
Dr. Nancy Klimas: It's discouraging to me. My first patient that I saw and I related this story already on the podcast, but she had seen so many doctors and she burst into tears when I said, there's something really wrong with you. That still happens today, all the time. It's still been 5, 6, 7, 8, 9, 10 doctors before they get to a doctor that is willing to do something to demonstrate that there's something actually really wrong. This is amazing, think about this case, Postural orthostatic tachycardia syndrome (POTS), dysautonomia, it's a problem where people's blood pressures go up and down and their pulse races and slows down, their blood pressure can be really low. How many times have I seen, I get a call from the patient in the ER where their blood pressure is 60/30? Anybody with their eyes closed in an ER would say this is not okay. But they give the diagnosis ME/CFS and they send them out without even volume, without even fluids. And I'm like, no! Anybody who walks into the ER with such low blood pressure, they can't stand up, they get an IV line and they get their volume replaced. It wouldn't matter what you called it. It always happens that way. But ME/CFS if they mentioned they have a disease, they’re like, get out of my ER. I hear it all the time. That means not only is a doctor not willing to think, they're not willing to believe in their own eyes. Here's something you can see, you can feel, you can prove. Here's something that is really wrong. Why don't you actually look at your own numbers that you just drew and say, that's not okay. But instead it's like, how did they fake that? How did they pick up low blood pressure? How do they fake syncope? How do they fake fainting? Get up because your pressure was so low. I’m just like, all the time like, come on guys. But you ask, what can we do? I've been at this for a long time as heard Cort and I talk about, it’s been more than 40 years and God knows how many hundreds and hundreds of lectures I've given, seen courses, and Ted talks, and anything I can think of to do, I've done it, and so is all my colleagues. Cindy Bateman, she's extraordinary. I can just tick them all off, it's not enough. One of the things that we require in our thinking is to get out of medical school. What test do you have to pass? Is there an ME/CFS question on that test? Because if there is, they will teach it. Instead of coming at it, we have it every way. Everything's case-based teaching these days. We've created cases and we've handed it to medical school curricula people and say, here's a case ready to go. Here's all the discussion points, here's the data, here's the evidence, it's ready to go. Attach it to your curricula. But if it's not on the board exam, then you go to the board people and say, why isn’t ME/CFS on the board exam? And now you begin to see it. Certainly long term it's even starting to creep in, beginning to creep in on the board exams. Then the curriculum development people say, we don't have something that's on the board. And then they have to come out and find the content and we've already made their content. That's medical school. But Cort was referring to something different. One of the reasons why doctors are so stubborn. In the 90s, there was a magazine cover that called this the Yuppie flu and identified as white middle class women. We have not gotten past this stupid Yuppie flu thing. It was wrong then, completely wrong. There is no data to support what they said in this press thing, but they said it and they said it on the cover.
Haylie Pomroy: And it was never retracted.
Dr. Nancy Klimas: We dealt with this stupid Yuppie flu thing for another 30 years. It's just crazy, makes me mad at this very moment. Who said that? Why did you ruin so many people's lives by creating some stupid name and putting it out there, and then putting it on the front page of your magazine? Doctors say, you mean the Yuppie flu? During those periods, doctors in my generation and younger that never went back to relearn anything. And they're just working off their 40 sammys a year and they're not necessarily keeping up.
Haylie Pomroy: My goal is to give a massive microphone, a massive megaphone to people like the two of you and just continue the conversation in a way that allows people to feel believed, to find hope, to give pearls of wisdom so that they can get help. And I cannot thank both of you enough, Dr. Klimas, all of your work and inspiration. You not only have elevated your work in your research, but you're dragging all of us along with you, and I can't thank you enough for that.
What a journey that I'm honored to be on. Cort, I've just been looking forward to meeting you. I've dug through your website. I've forwarded people so many things. I cannot believe you and your dogs, I love your dogs, don't you want to know how many I have? I can't believe all the work you've been able to manifest, all of the content you've been able to manifest, and the distillation of such a complex issue into content that people like myself can really absorb and take and help other people with. Thank you both. Please promise me you'll be back on. This was a great conversation about ME/CFS. I was shocked, I had chills, I am enraged, and I am inspired and motivated to keep the conversation going. Thank you. I hope to see you both on the podcast again soon.
Dr. Nancy Klimas: Thank you, Haylie! Remember it's healthrising.org this is Cort’s web page. And I don't know any better place to send a patient that's interested in this illness to learn in a very up to date and comprehensive way what's going on in this field.
Haylie Pomroy: Cort, I will make sure that we put a hotlink on all of these blog posts and also in our social media, I want to make sure that people have easy access to what can make a profound difference in their lives. Thank you.
Cort Johnson: I start out with chronic fatigue syndrome (ME/CFS) and then fibromyalgia and now Long COVID, POTS, and dysautonomia. We're covering the spectrum of illness. If you’re listening, have those, you can probably find some stuff.
Haylie Pomroy: I would love to have you back on to have the POTS conversation. I don't know if you're up on this, but it’s the #1 subject trending on TikTok right now. We are seeing so many young females and males, post-COVID. For individuals like you, this is not new news. There's so much vast learning in the millions of clinical hours that you and your colleagues can pull together in that knowledge base that can get us through the struggles, hopefully, quicker than all of the people that legacy before. Upwards and onwards. Lovely. Thank you. Thank you so much, you guys. This was great.
Dr. Nancy Klimas: Bye, Cort! Thank you so much.
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In this episode, I’m joined by Dr. Nancy Klimas, the Director of the Institute for Neuro-Immune Medicine at Nova Southeastern University, and Cort Johnson, founder of Health Rising.
Dr. Klimas shares insights on how early outbreaks shaped the study of ME/CFS, while Cort discusses the role of advocacy and research in bringing these conditions to light. Together, they emphasize the need for effective self-advocacy and the critical role of knowledgeable healthcare providers in managing these complex illnesses.
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Nancy Klimas, M.D., is the Director of the Institute for Neuro-Immune Medicine where she directs a group of remarkable interdisciplinary scientists and clinicians. They collaborate to discover innovative strategies for treating and preventing chronic illnesses, while also focusing on training the next generation of clinicians and scientists. With 40 years of professional experience, Dr. Nancy Klimas is internationally recognized for her work in multi-symptom disorders, including ME/CFS, GWI, fibromyalgia, and Long COVID.
LinkedIn: https://www.linkedin.com/in/nancy-klimas-49255178/
Instagram: https://instagram.com/nancyklimas
Cort Johnson is the founder of Health Rising, a leading website covering chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) research and treatment. Despite battling ME/CFS/FM since the 1980s, Cort earned degrees in Philosophy and Environmental Studies. Dissatisfied with online ME/CFS resources, he launched Phoenix Rising in 2004, and later founding Health Rising in 2012 to expand to FM. Cort has authored over a thousand blogs, earning recognition from patients, supporters, doctors, and researchers. He's been honored by Prohealth and IACFS/ME. Cort currently travels the western U.S. with his dogs while advocating for ME/CFS and FM awareness.
Website: https://www.healthrising.org/about-us/cort-johnson/
LinkedIn: https://www.linkedin.com/in/cort-johnson-53097213/
Facebook: https://www.facebook.com/cort.johnson.9/
Transcript Below:
Haylie Pomroy: I'm Haylie Pomroy, #1 New York Times bestselling author of The Fast Metabolism Diet and the Assistant Director of the Integrative Medicine Program for the Institute for Neuro-Immune Medicine. Today we are going to be talking about ME/CFS. I have some very incredible guests here with me today. First and foremost, I have the Dr. Nancy Klimas. She is the Director of the Institute for Neuro-Immune Medicine at NSU. She is also the Director of Environmental Medicine Research at the Miami VAMC GRECC, we are so fortunate to be joined with Cort Johnson. Cort is the Director and Founder of Health Rising. This is a website dedicated to covering the latest research and treatment possibilities for chronic fatigue syndrome (ME/CFS), and fibromyalgia. Cort and Dr. Klimas, thank you both so much for taking the time to be here with me today.
Cort Johnson: Thank you.
Dr. Nancy Klimas: Great to be here.
Haylie Pomroy: It's going to be a good conversation on a big subject. Cort, I'm going to start with you. How did you become connected with the Institute?
Cort Johnson: I’ve been connected with Nancy for a long time. Way before the institute was developed. That was the culmination of all her work. But I've been following Nancy since the late 80s or early 90s.
Dr. Nancy Klimas: Late 80s, early 90s, really from very much the beginning. We met each other at the very first meeting that I can recall that happened in our field.
Cort Johnson: That's the thing about Nancy. She's there from the beginning. When ME/CFS craft kicks in, people just really didn't study it.
Haylie Pomroy: When you say from the beginning, is that from when we started to identify this as an actual disease process or a disorder? Is that what you mean when you say from the beginning?
Cort Johnson: That's an interesting question because there really was a beginning for us. And that really had to do with, these outbreaks that occurred across the country that got a lot of media attention. Chronic fatigue syndrome has been known through many names, throughout its history, it's been with us probably forever. But it really gained attention in the US, I guess, in the mid-80s or early 90s. I, for instance, got chronic fatigue syndrome around 1980 and there was no chronic fatigue syndrome back then. I guess we had really a confluence of interesting outbreaks that the media covered and it started. They really started to research.
Haylie Pomroy: Was there a trigger in conversation or was there some sort of infectious trigger? When you say outbreak, do you mean where we started to have a more intelligent dialog? Give me a little bit of color on that.
Cort Johnson: It was funny because across the country, in Nevada, in New York, and I think there was 1 in Florida. Whether or not these things were happening before, suddenly, at least doctors became aware that people were coming down with this chronic illness after an infection. And it really seemed like something was sweeping across the country, and nobody's ever identified that. Nancy would probably have some ideas on this. Whether this was something that was always happening, our picture is it’s always happening. We certainly know that ME/CFS was always happening because we know that common pathogens can trigger it. It's always been happening. But there seem to be these outbreaks, there's any kind village outbreak where this little tourist town in Nevada, scores of people came down with it.
Haylie Pomroy: My brain goes, was there something environmental that was a trigger there? When we see the individuals in the Gulf War time period, we know that there was a big identifiable environmental insult right to the body. I'm fascinated by these pockets or these pods of this happening. Dr. Klimas when they first started talking about this or when you said, in the beginning, were the patients discounted? Was their good diagnostic abilities?
Dr. Nancy Klimas: Cort would be an example of somebody who didn't get a diagnosis for at least a decade after he became ill because in 1980 we didn't even have a case definition or a name. There had been historically what’s quite alluding to us, Icelandic disease, all these little episodes of post-infectious, but sometimes post-war or major toxic exposure. Episodes were people remained ill when everyone else recovered and often they were given their own little name. In the 80s, there were these episodes that quite alluded to with different towns that had known, like influenza epidemic or something that ran through the town, and then all these people that remained afterward. It caught enough interest that the CDC And Tony Komaroff, who we hope to have a guest soon on our podcast, went to investigate to see what was going on at Incline Village. They showed up, took samples, and went back to their labs to try to figure things out. And that was sort of the beginning of paying attention. From my perspective, it happened right at the same time I started seeing my first patients and they did not have names. I was in the same window of time, starting to see clusters of patients coming through my clinic. Not necessarily because we had an epidemic in Miami, but because I was an immunologist and the patients were hunting for answers. So they came to see me thinking it was something in their immune system. They identified me, it wasn't me identifying this weird thing going on. Within a few months, I got my immunology paper out a few months before Dr. Levi got his out at UCSF. He teased me about it because we've had the same findings, which there was something wrong with the part of the immune system that could clear an infection.
Haylie Pomroy: Can I just punctuate that for a minute? When was that paper?
Dr. Nancy Klimas: 1989 to 1991, We were publishing our first things. 1991, I think was the paper he was alluding to.
Haylie Pomroy: Identity identifying that there's something wrong with the immune system that allows the body to clear this infection or episode.
Dr. Nancy Klimas: It vigorously attacks an infection when it comes on board. Interesting observation. But that made a bunch of people who were looking at different clusters get together informally and say, we're doing something, and then it was really Tony Komaroff and Dr. Blackshear, who was at the NIH at the time and said, we need to have a meeting and name this thing and create a case definition. They really started a way that a field could start by at least identifying what we thought we were looking at in a way that we could all begin to do research with a common diagnosis.
Haylie Pomroy: Cort and Dr. Klimas, I'm sitting here just going, we're talking 34 plus years ago, and we still, in our institute, see people come in 10, 20 doctors later that haven't had an adequate diagnosis or even are believed. It just sunk in for a minute.
Dr. Nancy Klimas: Cort would tell you because he's the one that goaded me all the time. One of the most frustrating things early on was the split in the type of people doing the work that were between, essentially, psychosomatic medicine and biologic underpinnings of an illness more in the frame of the way I might have framed it. And we were set against each other. We were often actually debating each other on stages. I think we wasted 10 long years of research just to refute that this wasn’t “all in your head.” It was really a hard time. And eventually, we got past that. We're way past that now. We've all agreed, let's go on and move on. I remember Cort challenging me as an investigator and as a clinician to be an advocate. I was saying that doctors are supposed to be advocates. Scientists are supposed to be able to stand back, be impartial, and judge the data. When you start into advocacy, you might not be able to do your job as an investigator. Then eventually he convinced me that the only people that could move us past this spot were the academic community, the academic and clinical community that had to step up and do something. When we formed our professional organization, the IACFS, we were supposed to be promoting research, clinical guidelines, that kind of thing. But somewhere along the way, we had this amazing event happen where we recognized our power as clinicians and as experts to make a difference. It actually happened in Norway. Cort, you might remember this, but in Norway, we were so broke as an organization that if they paid us to go somewhere, we'd say, you pay us to come, we'll put on a conference while we're there, but we need to meet face to face. We need a conference room, basically, we would go anywhere in the world just to pay us to come. Not individually. Just the organization needs a place to meet and someone to pay our expenses to get there so we can have a board meeting. We were doing that in Norway, and the Minister of Health came to the meeting and she completely did a 180 for their country. After this meeting she said, oh my God, it's real, it's biologic. We've been putting these people in psych units, we're going to stop. Today we were in our board meeting and I was probably the most advocacy-minded person on the board at the time and I'm saying, “See? It's knowledge that changes things.” We're knowledgeable and we have to stand up with our knowledge and make policy changes. This will change lives more than anything else we can do in our lifetime. Cort was the guy standing behind me in the years before that saying, you're not loud enough. You're not taking a big enough stand. Get up on that limb. Why aren't you out there talking more? And I'm like, why am I not? He made me think. How do you balance the balance of being a good scientist, a good clinician, and the best patient advocate you can be? And there is a way to do that.
Haylie Pomroy: And a person that disseminates science, too. Isn't hoarding the data. That's heartbreaking when we see that. Cort, I keep hearing from Dr. Klimas that you were driving. What inspired you?
Dr. Nancy Klimas: He’s a pushy guy!
Haylie Pomroy: Where does it come from? We don't do these things for no reason. What was the motivation? What's the inspiration? What drives you? Because it's a lot of energy and focus to work on your own health journey. Why were you so vested in the advocacy being there?
Cort Johnson: How can you not? This thing totally changed my life. If not this, then what? It just seems like a natural extension, and I've always been really interested in research and everything. I’m also fascinated in the advocacy aspect and organizational aspect. With regards to the NIH and why we're not getting the funding we're not getting and what the block is there.
Haylie Pomroy: When did you start Health Rising? When did you start the website?
Cort Johnson: I first started a website called Phoenix Rising, I think it was in the mid-90s.
Haylie Pomroy: At that point, had you had a diagnosis or were you working through this syndrome and not identified?
Cort Johnson: No. Actually, in the mid-90s I was running away from the diagnosis. I had heard about chronic fatigue syndrome. I heard it was a dead end, and I didn't know any associated with anything like that. It's a little sketchy for me at the time, but at some point I got it and I've always been really interested in research, so I'm looking all over the place, all over the internet for the answers and I'm seeing the same simple explanations or overview showing up everywhere and not really getting anywhere. I started a website in early 2000s. It's a front-page website if you remember. I just started reviewing the literature and trying to translate the literature so I can understand it, so other people can understand it. Advocacy is just key. I really wonder whether the development of the IACFS and me and this real, rigorous, professional scientific outlook, we're going to have conferences, we're going to have a professional research organization. I wonder if that's really what's held us apart from diseases like fibromyalgia. They don't have anything like that. We have centers, we have Nancy’s Center. There are a few other centers. We have some private funders, and even despite all the fatigue and all that, it's a very active community. It's really a very active community.
Haylie Pomroy: And a lot of brilliant, powerful people. I do agree with you that organizing, there's power in numbers and there's effectiveness in organizing. I think of all the people that have started to listen to this podcast and they're maybe starting to identify with some of the symptom profiles or they've been rejected or turned away or not getting things. I'd love to hear from both of you. Someone that feels like they need to seek possibly a diagnosis, and we're seeing with Long COVID, they’re saying something had changed in my body, something the way that my body responds, the way that my body reacts. What would you suggest that they do, what's their next step to become part of the organization, to talk to their doctor? What's the next step for them?
Dr. Nancy Klimas: I'm going to say that as much as I hate Dr. Google, and I do, there are very good places using the internet to learn as much as you can, and Cort’s website is perhaps the best source I know of well-written, crystallized up to date knowledge on what the illness is like and where the science stands and what we've learned, the things people have tried to do or that are evidence-based, things that are experiential. That's why I was so keen to have him on our podcast, just because I don't know anybody else that can take really complicated concepts and make them understandable and clear, and then get them down in words, on paper, or on the internet, or screen.
Haylie Pomroy: Cort is that healthrising.com, what's the website?
Cort Johnson: healthrising.org
Haylie Pomroy: healthrising.org Dr. Klimas I love the way you said that because oftentimes there's a big divide between, even the knowledge base if we have a physician or practitioner that has this knowledge base and accessibility to the patient and individuals like yourself that bridge the gap, that help people like me understand what's going on in the body. And I think also empathize because you've been in their shoes, seeking support and help. Cort, I want to ask you this question, which is what does self-advocacy look like in your mind?
Dr. Nancy Klimas: That's a good question. I love that.
Cort Johnson: Self-advocacy. That's a very interesting question. Part of it is going for yourself that this disease is real and serious and just knowing. Knowing that there's nothing wrong with you. That something has happened to your body and even though you can't participate in all these things that you wanted to participate in, it's not a personal flaw. It's just something that's happened and this is the path you're on right now. This is your path, make the best of it. Part of self-advocacy is simply making sure that you take care of yourself. That you put that first and foremost. Then self-advocacy is also being a stand for this disease with your doctor, that this is a real disease and a lot of doctors are getting that now. There is a lot of information on Health Rising about fibromyalgia and chronic fatigue syndrome. We have a page called “How to prove that your illness is not depression?” or “How to prove that fibromyalgia is a serious disease?” And we have a list of really neat… And when you're done with that, you get...
Haylie Pomroy: You have the right verbiage. I read something the other day that said, you're not looking for a practitioner that believes you, you're looking for a practitioner that's a fierce advocate for your truth. If you're having to convince someone, it's not a teammate that you're looking for, You're looking for someone that we knew and that's what's really unique about the institute. Being outside in my own health struggles, in dark times when you said 10 years of research was lost debating this, I got chills because I can tell you so much. Me getting help was lost in all the effort that I made to get somebody to believe that I needed help. And I think of all that time, work, effort, and googling to say I have enough evidence that shows that my concerns are valid, and you should believe me, which is just crazy.
Dr. Nancy Klimas: That's so terrible.
Haylie Pomroy: But it's so true. And how much energy, effort, time, money, and resources it takes just to get you to the threshold of beginning to be on the journey of either creating a new homeostasis or towards health. Dr. Klimas, what does self-advocacy look like to you?
Dr. Nancy Klimas: First being willing to fire a doctor. That's really important.
Cort Johnson: Yes, yes.
Haylie Pomroy: Dr. Klimas, my daughter was in the hospital and you told me to fire my doctor, or you gave me permission to fire my doctor. I, on behalf of this mama, I cannot thank you enough. And boy, did I get a gem of a doctor afterward. I mean, she was lovely, but I was afraid and I'm pretty ornery. Thank you for saying that to all of us.
Dr. Nancy Klimas: You are already sick. You have an illness that saps you of your energy, you've got about 15-20 minutes. If you're good at concentration, you shouldn't have to spend it fighting with your doctor. Doctors are supposed to have listening skills and compassion and all those things, and you're not likely to change the inner workings of a person if they're not showing their compassion, you're not going to make them get compassionate. You can't. That's not your power. Lose the ones that don't make you feel like you're on a path towards getting better. What's the point of that? You just spending money and getting big, expensive workups and it's not moving in. That's one thing. Another thing is to learn as much as you can. As irritating as it is to have a patient come in with 12 pages, single-spaced stuff, that they want you to read before you even get to talk. At least in some way, there’s learning something. I would be happy to do a whole podcast on how to use your doctor's time wisely. But at least I know that when I'm seeing someone that’s, I have this patient with Long COVID right now that's really challenging me, and I think I'm on top of things. Boy, do I know stuff, he knows stuff right before it's published. I'm like, wait a minute. No fear. You can't hold me accountable for science that hasn't been presented yet.
Haylie Pomroy: That's exciting though.
Dr. Nancy Klimas: He really challenges me and I now understand he’s advocating for his son, and he's amazing. Anyway, the point is to get rid of people that aren’t helping you and then building your team in a sensible way. One of the things I find, because there are only so many ME/CFS experts or Long COVID experts or the immunotoxicology experts in the country, in terms of lots of clinical expertise, I'm going to say you probably have less than 200 people like that in the whole world, trying to take care of an epidemic of post-viral illness, or post-environmental toxic illness. We should have lots more. But there are people who are solidly trained in it, and those are integrative medicine doctors. They go through a lot of training to try to understand how everything gets together. And you can find integrative medicine doctors, they are everywhere. I usually say, let's start by getting your quarterback to be the integrative medicine doctor. And the other is, if you can find one or if you have a primary care doctor that you love, then great, stick with them. If somebody is listening to you and learning, and learning on your journey, you got a great doctor. You don't have to change that. But if you are looking fresh for somebody because you just figured that one wasn’t helping, then look to somebody that's got some decent education on how complicated illnesses are glued together and how to unravel them.
Cort Johnson: Nancy said just reminded me something about having effective doctor appointments. One thing I would recommend for somebody who's new to this, to anybody actually, is a podcast called Unraveled. It's produced by Dr. Ruhi and Dr. Kaufmann, they’re 2 ME/CFS experts, and just talk about everything. I think they've done like 40 or 50 episodes. There's just a wealth of information on there. That's a great place to go.
Haylie Pomroy: In our community, we do this program that we call Request for Care. We help people get organized before their doctor's appointment if they want to have, like you said, Dr. Klimas, a note, volumes of data behind it, how to distill that data, and create a cover letter that pulls out the salient points so that you can maximize your visit. And we take our community, we took about 2300 people just recently through creating a request for care before they go in, whether it's a physical or something grander than that. But both of you brought up something, I'm hoping this is something that good that came out of the pandemic. I think that integrative medicine has been shoved to the forefront because of the possibility for the complexity of treatment in the complexity of what we're seeing right now happening in the bodies. I think we used to take a more reductionistic approach or maybe systems approach, like cardiology, or orthopedics, and say, we'll fix a bone or we'll fix the heart. But in these complex diseases like ME/CFS and Long COVID, the complexity of what's happening in the body is requiring complexity of care. There's this converging where something's got to change. We've got to treat the patient more. I don't know if I use the word holistically, but more whole body at least, or all systems on board in this. I want to ask both of you. I know you saw it coming with COVID or with this particular.
Dr. Nancy Klimas: Oh yeah. I was like oh my god, it's going to hit as big time. And look what happened.
Haylie Pomroy: I love your response. You didn't know I was going to ask you that question.
Dr. Nancy Klimas: I was just looking at our team and we are already booked and we're about to…
Haylie Pomroy: Get hammered.
Dr. Nancy Klimas: 5 or 10 times greater volume than we’re already managing.
Haylie Pomroy: And this whole thing about, in 10 to 14 days, as long as you survive it, you're going to be done. I had the opportunity to watch everybody at the Institute and watching you guys go… What did we learn with ME/CFS that just allowed us to catapult to the forefront with our Long COVID patients?
Cort Johnson: I don't know what allowed us to catapult. I think the ME/CFS, for me it was just amazing because when COVID hit, we all knew that Long COVID was coming.
Haylie Pomroy: But I hear you say that. But so many people said, no, what are you talking about? I'm out here, you guys all saw it crystal clear.
Cort Johnson: There's no doubt. You never know until you know but it was a big infectious illness, and ME/CFS has always been associated as a post-infectious illness, it just followed right along. It just made so much sense. But my question was how similar is it going to end up being in the research field? Are the findings going to line up? Is it going to be different because it's coronavirus? Are things going to end up looking really different? That wouldn't be so good for ME/CFS. We'd really like to have them be very similar because we want to get, we want to learn from this. Really astonishing and really made me very happy is just how similar these diseases have shown up to be. I mean from herpes virus reactivation to metabolic problems to blood vessel problems, even to the brain. Almost couldn't have had it any better, any closer. I think the Long COVID field is still really catching up to the ME/CFS field. I think we're way ahead in a lot of areas.
Haylie Pomroy: I think you guys will reach down and pull people up through research because there are people that are just starting to say, there seems to be some sort of an inflammatory or neuroinflammatory response or an immune modulation response. And I watch you guys all go, “Duh, yeah?”.
Cort Johnson: I'm sure there are some differences. But for me, it's been really nice to see the large similarities which makes me hope that it will help us understand Long COVID. But the one thing that I've been surprised at is that I thought, because ME/CFS was quickly identified with Long COVID, I thought that would lead to more funding at the NIH, and it just hasn't. I really don't understand that.
Dr. Nancy Klimas: I thought the same thing. The recovery network, which is a $1.15 billion and $500 million new money coming spent for Long COVID, which is, to be real in ME/CFS, our average year for a long time was $3 million to $6 million of funding for the entire field. The big year when they brought up the centers, we might have reached about, we've had a maximum of about $20 million a year in any given year of funding. And then along comes Long COVID with $1.5 billion in committed funds and there's a tremendous amount of work, which is so exciting. For the longest time, we've been saying to the NIH, if you put set aside money, they will come. And they said, no, there’s money there, just apply, you'll get it. And it's just not been true. And a few times when there’s been set aside, if there's a center award being out, they’ll say here's an extra $3 million, they get a lot more applications when there's the perception by the investigators that they might get funded. The recovery network, there wasn't a large university in the country that was left out of that application. 200 applications that involved multiple institutions went at the recovery network funds. 248, I think? We’re like how many large institutions with medical schools are there? They all went in. Everybody went in for a recovery network application. Think about what that means to that new money, a lot of money. It just swept a vast number of new investigators that weren't there before. Now, I will say, as one of the old investigators, that left us out because there was a decision not to compare ME/CFS to Long COVID in that money. Those of us that put applications in that had said, what we have to offer is all these experience and data and biorepositories and all this stuff that we know about ME/CFS, wouldn't you like to have that compared to other illnesses? And they said we can't compare them. Why? Duration of illness. These people with Long COVID, your patients for Long COVID, we can't come in with ME/CFS they have to be pre-2020. Already they have at least 3 or 4 years of illness, how are we going to compare them to someone with only 1 or 2 years of illness? And that was a decision made that we were not going to be allowed in or at least in that first sweep. I think that was perhaps an idea that it was going to go away, that Long COVID was going to burn out, and these people are going to get better and they're going to be different. Now, it's 2024, and 2020 people are still sick. Four years of illness, now they are long duration illness. And all of a sudden there's actually quite a bit more interest in comparing to ME/CFS. We're doing a Long COVID to ME/CFS that's funded by the CDC, not by the NIH. It's a good study intended to compare ME/CFS to Long COVID. That is its intent, its main hypothesis. What are the similarities and differences? But it took the CDC actually to fund that one. We had applied through the recovery network and that was what our…
Cort Johnson: That's an example of advocacy though. That 1.15 billion came from Congress, did not come from the NIH, came from a congressman who had, I've heard that he played a big role. He has a form of Long COVID.
Dr. Nancy Klimas: Knowing someone that has ME/CFS, actually it’s an interesting study, this was a Lenny Jason study that said, when you're looking for a doctor that knows something about ME/CFS, they didn't learn at medical school. They learned it because they have a family member with ME/CFS. They called all the doctors to see who knew anything, and then people who knew anything, or the people who actually had a family member.
Haylie Pomroy: That had to go back to school.
Dr. Nancy Klimas: No. Then they figure it out. And Long COVID, the same way when you talk about the congressman and funding, I remember very early, Cort you might remember this, remember Hyde and Kennedy, the two people that probably shouldn't be in the same elevator together. Senator Kennedy.
Cort Johnson: Byron Hyde?
Dr. Nancy Klimas: No, Byron Hyde, the Congress Hyde. The most right-wing on one side and Kennedy the most left-wing on the other side co-sponsored the bill for ME/CFS because they had staff members who have family members. In some way or other, they were connected. And we had a long time ago that was co-sponsored by Biden and Kennedy in Congress. And I said, well, the one thing that brings bipartisan support to anything, it's going to be around health and medicine. Right now it's about the hardest time you can imagine to get something, seen by both sides of the House or the Senate right now. But they are doing things, in bipartisan ways, for veterans with environmental toxic, the past cap, that was huge and they had to get that through. This recovery network works the same way. To get $1.15 billion into a budget to go after an illness in its earliest years.
Haylie Pomroy: Cort, on healthrising.org I know that there's a lot of information and data. Is there a way that people can take an action step and become involved in advocacy?
Cort Johnson: We frequently have, we're like a funnel, we promote the sovereignty initiative, which works in the legislative sphere. Which is where you can really get the most done. Actually this week, we’re participating in Advocacy Week. Anybody with Long COVID who's listening? There's a Long COVID moonshot bill that's just been coming out of Bernie Sanders's office.
Haylie Pomroy: A Long COVID what?
Cort Johnson: Moonshot. I think that’s asking for $1 billion a year in funding. So far as I know, Long COVID still does not, it's a problem with these diseases they affect so many different systems that they don't know where to put them. ME/CFS does not have a home in NIH, it's not affiliated with an institute and neither is Long COVID. The idea is to build a Post-infectious Disease Institute, where we can study ME/CFS, Long COVID, POTS, and all these diseases. If you think about it, you don't stay diabetes across 15 or 16 different institutes or heart disease, you have one institute. But that's how ME/CFS has been studied, and these other diseases, post Lyme disease. The Sanders bill from the ME/CFS perspective is flawed in that it does not include anything other than Long COVID. Does not include any other post-infectious diseases. We're going to be pushing to…
Haylie Pomroy: To shift that. Are you finding that individuals that had any ME/CFS prior to COVID that then became categorized in the Long COVID category are able to get Long COVID support or research, or are they taking it out of those research opportunities because they were previously diagnosed with ME/CFS?
Cort Johnson: No, they're Kryptonite or whatever. They need a clean COVID diagnosis. That's all they want.
Haylie Pomroy: Yeah, that's been really frustrating for me to watch because we've seen people that were doing well or doing better that get, I don't know exactly the right terminology, you both will have to help me, but get a new infection. It reactivates a historical infection or a co-infection. And they're back to square one or square zero and they can't get the support from. It's like, oh, you already had that before. You were just having a couple of good moments and we're not going to classify it over in here. That's hard for me to watch in our chat rooms, in our communities.
Cort Johnson: One great thing about the recovery network is they opened up all these Long COVID clinics. Nancy was talking about just the sheer mass of doctors who now know about Long COVID and therefore must know something about ME/CFS.
Haylie Pomroy: It took 10 years. I wrote this down, 10 years of fighting over whether to believe the post-viral chronic illness tissue wasn't psychosomatic. It took 10 years, long before COVID, our pandemic hit, of debating whether ME/CFS was true or not or biological or not, that fight was brought right to the doorstep when we had the pandemic. I feel like some of that's why they're able to just create these treatment centers because there isn't then, I don't know, it’s still going on out there. There isn't it's psychosomatic and it's just all in your head and you need to get more rest and exercise more. At least when we're out there talking, we hear a lot about that. Which leads me to my last question and I would love to hear from each of you. Why do you still feel like so many patients are misunderstood or misdiagnosed? Why is this still happening? The research is solid.
Cort Johnson: That's a great question. Isn't that funny? Nancy was talking about, it took ten years in the research field to stop focusing on psychosomatic stuff and move to biology. I think doctors are another case entirely. I just think it's been, my sense is, that it's been much slower for doctors to get that this is a real illness. They're probably very busy, it's hard to keep up with everything. They weren't taught about ME/CFS. Whatever they were taught about, it wasn't good. They don't have good treatment options. They don't like to, I'm sure it's difficult. With all these different symptoms.
Haylie Pomroy: There's a super straight line between high cholesterol and a statin or elevated hemoglobin A1C and metformin. You're right, I love that point. It's not a straight line. It takes a ton of creativity and a ton of work.
Cort Johnson: It takes a lot of work. As Nancy knows, it takes a lot of work to really properly evaluate an ME/CFS patient, you can't just do a lab test, I mean, there are many lab tests you can do, but there's not a definitive lab test.
Haylie Pomroy: I love what you said. I don't feel like it gives an excuse for a physician or a practitioner not heroically coming and throwing their cape on and identifying and validating. That's what I want. But it gives us, as the patient population, a little bit of understanding, and then we can become better advocates and better communicators. Dr. Klimas, will you add to that? We have tears in the clinic when you guys start pulling blood because people say what, you're going to actually do something from a biology perspective and actually ask my body if it's okay?
Dr. Nancy Klimas: It's discouraging to me. My first patient that I saw and I related this story already on the podcast, but she had seen so many doctors and she burst into tears when I said, there's something really wrong with you. That still happens today, all the time. It's still been 5, 6, 7, 8, 9, 10 doctors before they get to a doctor that is willing to do something to demonstrate that there's something actually really wrong. This is amazing, think about this case, Postural orthostatic tachycardia syndrome (POTS), dysautonomia, it's a problem where people's blood pressures go up and down and their pulse races and slows down, their blood pressure can be really low. How many times have I seen, I get a call from the patient in the ER where their blood pressure is 60/30? Anybody with their eyes closed in an ER would say this is not okay. But they give the diagnosis ME/CFS and they send them out without even volume, without even fluids. And I'm like, no! Anybody who walks into the ER with such low blood pressure, they can't stand up, they get an IV line and they get their volume replaced. It wouldn't matter what you called it. It always happens that way. But ME/CFS if they mentioned they have a disease, they’re like, get out of my ER. I hear it all the time. That means not only is a doctor not willing to think, they're not willing to believe in their own eyes. Here's something you can see, you can feel, you can prove. Here's something that is really wrong. Why don't you actually look at your own numbers that you just drew and say, that's not okay. But instead it's like, how did they fake that? How did they pick up low blood pressure? How do they fake syncope? How do they fake fainting? Get up because your pressure was so low. I’m just like, all the time like, come on guys. But you ask, what can we do? I've been at this for a long time as heard Cort and I talk about, it’s been more than 40 years and God knows how many hundreds and hundreds of lectures I've given, seen courses, and Ted talks, and anything I can think of to do, I've done it, and so is all my colleagues. Cindy Bateman, she's extraordinary. I can just tick them all off, it's not enough. One of the things that we require in our thinking is to get out of medical school. What test do you have to pass? Is there an ME/CFS question on that test? Because if there is, they will teach it. Instead of coming at it, we have it every way. Everything's case-based teaching these days. We've created cases and we've handed it to medical school curricula people and say, here's a case ready to go. Here's all the discussion points, here's the data, here's the evidence, it's ready to go. Attach it to your curricula. But if it's not on the board exam, then you go to the board people and say, why isn’t ME/CFS on the board exam? And now you begin to see it. Certainly long term it's even starting to creep in, beginning to creep in on the board exams. Then the curriculum development people say, we don't have something that's on the board. And then they have to come out and find the content and we've already made their content. That's medical school. But Cort was referring to something different. One of the reasons why doctors are so stubborn. In the 90s, there was a magazine cover that called this the Yuppie flu and identified as white middle class women. We have not gotten past this stupid Yuppie flu thing. It was wrong then, completely wrong. There is no data to support what they said in this press thing, but they said it and they said it on the cover.
Haylie Pomroy: And it was never retracted.
Dr. Nancy Klimas: We dealt with this stupid Yuppie flu thing for another 30 years. It's just crazy, makes me mad at this very moment. Who said that? Why did you ruin so many people's lives by creating some stupid name and putting it out there, and then putting it on the front page of your magazine? Doctors say, you mean the Yuppie flu? During those periods, doctors in my generation and younger that never went back to relearn anything. And they're just working off their 40 sammys a year and they're not necessarily keeping up.
Haylie Pomroy: My goal is to give a massive microphone, a massive megaphone to people like the two of you and just continue the conversation in a way that allows people to feel believed, to find hope, to give pearls of wisdom so that they can get help. And I cannot thank both of you enough, Dr. Klimas, all of your work and inspiration. You not only have elevated your work in your research, but you're dragging all of us along with you, and I can't thank you enough for that.
What a journey that I'm honored to be on. Cort, I've just been looking forward to meeting you. I've dug through your website. I've forwarded people so many things. I cannot believe you and your dogs, I love your dogs, don't you want to know how many I have? I can't believe all the work you've been able to manifest, all of the content you've been able to manifest, and the distillation of such a complex issue into content that people like myself can really absorb and take and help other people with. Thank you both. Please promise me you'll be back on. This was a great conversation about ME/CFS. I was shocked, I had chills, I am enraged, and I am inspired and motivated to keep the conversation going. Thank you. I hope to see you both on the podcast again soon.
Dr. Nancy Klimas: Thank you, Haylie! Remember it's healthrising.org this is Cort’s web page. And I don't know any better place to send a patient that's interested in this illness to learn in a very up to date and comprehensive way what's going on in this field.
Haylie Pomroy: Cort, I will make sure that we put a hotlink on all of these blog posts and also in our social media, I want to make sure that people have easy access to what can make a profound difference in their lives. Thank you.
Cort Johnson: I start out with chronic fatigue syndrome (ME/CFS) and then fibromyalgia and now Long COVID, POTS, and dysautonomia. We're covering the spectrum of illness. If you’re listening, have those, you can probably find some stuff.
Haylie Pomroy: I would love to have you back on to have the POTS conversation. I don't know if you're up on this, but it’s the #1 subject trending on TikTok right now. We are seeing so many young females and males, post-COVID. For individuals like you, this is not new news. There's so much vast learning in the millions of clinical hours that you and your colleagues can pull together in that knowledge base that can get us through the struggles, hopefully, quicker than all of the people that legacy before. Upwards and onwards. Lovely. Thank you. Thank you so much, you guys. This was great.
Dr. Nancy Klimas: Bye, Cort! Thank you so much.
