What’s Going on in ME/CFS (and top tips) with Cort Johnson

head_shot_ari
Content By: Ari Whitten & Cort Johnson

Today I’m speaking with Cort Johnson, the Founder and Director of Health Rising, a website dedicated to covering the latest research and treatment possibilities for chronic fatigue syndrome ME/CFS, and fibromyalgia.

We’re talking about what’s going on in the world of CFS, ME, and Fibromyalgia.

In this podcast, Cort and I discuss: 

  • What is going on in ME/CFS? 
  • The most prominent effects CFS/ME has on your body
  • Is there a drug cure for CFS? 
  • The little considered impact CFS has on mental health
  • The potential effect of cold exposure on Fibromyalgia
  • Hormesis – the healthy form of stress
  • How Long COVID ties into ME/CFS
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Transcript

Ari: Hey there, welcome back to the Energy Blueprint Podcast. I am here with someone who I have wanted to interview for a very long time. I’ve been following his work and his articles on his website for I think at least four or five years now. His name is Cort Johnson, and he is a very big advocate for people with ME/CFS. He is the founder and director of Health Rising which is a website dedicated to covering the latest research and treatment possibilities for chronic fatigue syndrome ME/CFS, and fibromyalgia. Cort came down with EM/CFS/FM, fibromyalgia, while engaged in an ethical studies program at the University of California at Santa Cruz during the 1980s.

He’s done a whole bunch of other things since then, but obviously, that personal experience with it was the catalyst for his interest and obsession with ME/CFS. Dissatisfied with the level of content on ME/CFS on the web, he decided to take a deep dive into the research on that subject. The result in 2004 was a basic content-based website focused on explicating ME/CFS research and treatments called Phoenix Rising. By 2010 that became the most visited ME/CFS website on the internet. Then in December 2012, Cort left Phoenix Rising to form Health Rising and broadened his focus to include fibromyalgia. Over time he’s produced over 1000 blogs on ME/CFS and FM that have been hailed for their comprehensiveness and depth. I can attest to that. I’ve read probably not all thousand of them, but I’ve read probably a couple of hundred of them. They are experts talking about the latest research on the subject. With all that said, it’s such a pleasure to finally connect with you, Cort.

Cort: Thank you. I have to say that even though I was astounded that I’ve written almost or around 1000 or over 1000 blogs. I have at times stumbled across my articles and read them. I thought they were very good not realizing that I’d written them. [laughter] There’s a lot of content there. Not all of which I can keep up with.

Ari: That’s good that you’re reading your articles, and you’re, “Man, this guy really knows this stuff.”

Cort: Who is that person?

How people with CFS/ME are affected psychologically and metabolically

Ari: Nice. Having said that you’ve been doing this, you’ve had an interest in this since your personal experience back in the 1980s, and you’ve been doing this for I guess two decades-ish at this point? What do you think is the best broad overview as far as understanding what is going on physiologically in ME/CFS? There was a time for a long time where doctors just interpreted it as psychosomatic phenomenon. Would tell patients, “There’s nothing wrong with you. Here’s some antidepressants.” What’s changed since then within mainstream thinking on ME/CFS? What do you think is the most compelling explanation for what’s going on physiologically, metabolically in those with ME/CFS?

Cort: Well, that’s a great question. There’s no doubt a tremendous amount has changed, well, since I came down with it for sure, and really a lot has changed recently. I think a tremendous amount is going to change over the next couple of years. I think that’s because of the long COVID situation. As many people probably know, the lung COVID patients, many of them are looking very much like ME/CFS patients. That’s too bad for them, but that’s good news for us. I must say, if you’re going to come down with this disease or something like this disease, now it’s just the best time ever. If you have to, now it’s just the best time ever.

For one, we’ve been struggling for years to get money out of the national institutes of health, which is basically, they’ve just neglected this disease terribly. It affects from one to two and a half million people in the US. Studies have shown that it’s more functionally disabling than diseases like heart disease and heart failure and kidney disease. Believe it or not people with ME/CFS, they are significantly more functionally disabled than people with those very serious diseases. We’ve been pounding on the NIH for years to increase our funding. They really haven’t. It fell to just incredibly low depths about six or seven years ago, and they bumped it up a little bit, but it’s still just a pitiful amount of funding.

On a side note, ME/CFS is largely, not completely, but much of it is a post-infectious disease. For most people, it’s triggered by infections and the NIH had a lot of opportunities to find out what happens to the body when you have an infection, when an infection occurs, and it lapses into this long-term chronic illness. They turn their noses up at that. Now here we are with the long COVID patients and with hundreds of thousands, if not millions of people coming down with this very debilitating, potentially very debilitating illness, and nobody knows what to do.

The good news is that the NIH has received over a billion dollars to study long COVID. That’s going to make a tremendous difference for them. We’ve never had anywhere near that kind of funding, so that’s going to make a tremendous difference for them. It’s going to make a tremendous difference for us. I fully anticipate we’re going to have some real breakthrough. With some real breakthroughs are going to show up over the next couple of years because there’s a ton of research that’s going to go into determining what happens when somebody gets an infection and they don’t recover. That’s the good news. That doesn’t really answer your question.

We have a big clue with regards to ME/CFS. That’s post exertional malaise, which is a term that was actually introduced to the medical lexicon by chronic fatigue syndrome, because exertion, problems with exertion play such a role in this disease. Early on, we had a group of exercise physiologist from a small university in Northern California, one of whom had chronic fatigue syndrome. She started doing these unusual exercise tests, they’re called two-day maximal exercise tests. These tests are unusual, not because they were new, but because they haven’t been done by the medical profession for so many years.

The reason they haven’t been done by the medical profession, is that they’ve been tried in all sorts of conditions, all sorts of serious conditions again, and what they found was is if you put a person, even with heart disease or heart failure, all sorts of really, really very serious conditions. If you put them on a bike one day, and you have them exercise to exhaustion, and then you put them on a bike the next day, and you have an exercise to exhaustion again, they can still put out the same amount of energy the second day that they did the first day.

When she put people with chronic fatigue syndrome on the bike, though, they could not do that, during that first exercise period, something happened to their ability to produce energy which made them unable to produce the same amount of energy the next day. These researchers, they’re called the Workwell Foundation, just on the side they do these kind of rock-solid disability tests, because they can actually show a functional impairment happening in chronic fatigue syndrome. As they dug deeper into these exercise tests, they found that people with chronic fatigue syndrome, they enter into something called anaerobic energy production very quickly, and they exit out of aerobic energy production very quickly.

Now, aerobic energy production is where the body uses oxygen to produce ATP. It’s very efficient, it’s very clean form of energy. It’s a form of energy healthy people use when they exercise. People with chronic fatigue syndrome, unfortunately, they’re out of it and they’re relying on anaerobic energy production. Anaerobic energy production, you just produce a little ATP and it comes out at a great cost of it produces toxic byproducts, and it produces symptoms like fatigue and pain. That was a big clue that aerobic energy production systems of people with chronic fatigue syndrome are broken.

When they dug deeper, they also found that some people with chronic fatigue syndrome were not able, their ventilation, they weren’t able to pump as much oxygen into their lungs as healthy people, they found their heart rate, their heart rate wasn’t able to keep track as it should with exercise, they weren’t able to accelerate their heart rate to the right amount and they’re producing too much lactate. Right there we have a really good explanation. We don’t know why it’s happening., but we have evidence that something has gone really wrong with people with their energy production system.

The physiological abnormalities in people who suffer from Chronic Fatigue

Ari: Right there, that’s one of the big shifts in mainstream thinking around ME/CFS over the last few decades is what was once thought to be a purely psychosomatic thing. It’s all in the head, these are just hypochondriacs, these are depressed people. Now, we actually have quite a lot of solid research showing that there are very real physiological abnormalities in these individuals. Is that accurate to say?

Cort: Yes. It’s getting better. A couple years ago, a Harvard pulmonologist named David Systrom, he started doing invasive cardiopulmonary tests on people with chronic fatigue syndrome. In these invasivecardiopulmonary test, he puts a catheter into an artery, a catheter into a vein. He can measure the amount of blood that’s going to the muscles, he can measure the amount of oxygen and all sorts of things. When he did these tests on people with chronic fatigue syndrome, he found that about half of them, they were not utilizing oxygen, that is, he could measure the oxygen content going to the muscles and then when it came back on the other side, the oxygen levels were too high that for some reason, their muscles were not utilizing oxygen properly.

He’s uncovered three different reasons for this and chronic fatigue syndrome, one of which is mitochondrial dysfunction, if mitochondrial dysfunction is happening in some patients, one of which is hyperventilation. This is not a psychological reaction, this is a physiological problem, which is causing somehow, the signals for breathing are getting disrupted. When a significant number of people get on a bicycle, they are breathing too deeply and too rapidly, which is reducing the CO2 levels which is in their blood, which actually makes it more difficult for oxygen to leave the red blood vessels and flow into the mitochondria.

The third one is problems with the microcirculation. He’s finding that he’s measuring the blood going down to the muscles, and he’s measuring it coming back from the muscles, and there’s less blood coming back from the muscles. Somewhere along there, blood is getting dispersed into the system. He believes it’s getting shunted away from the muscles at some point. Here’s another real validation, this guy is from Harvard, this guy is well respected, he didn’t start out in this field, he’s somebody people will listen to. It’s been hard. It’s been hard to get other researchers to listen to the exercise physiologist in the field, these findings are so unique that they say, well, your machine must be broken because we’d never seen this before.

Ari: Just to summarize that, did you say there’s a defect from as far as the blood going to the muscles or to the cells, is there a defect there? Did he find that there’s less blood flow or less oxygen in the blood?

Cort: Yes, it’s somewhere blood is being lost probably before it reaches the muscles, therefore, it makes it hard to produce energy.

Ari: We have a defect there somewhere in the cardiopulmonary system. There’s a defect, we have a number of lines of evidence suggesting that defects at the cellular level and at the mitochondrial level, as far as the ability to use oxygen and efficiently produce energy. Then there’s also defects after that, as far as the blood going back to the heart and decreased CO2 levels and too high of oxygen and the returning blood and so on.

Cort: Oh, you got that very quickly.

Ari: One of the things that I think is interesting, and maybe this is something we’ll explore now or later on, but as I see it, I see two very different fundamental ways of thinking about solving these problems. On the one hand, I think you have the allopathic paradigm, a conventional medical paradigm that is very much looking for the physiological defect. The biochemical mechanism that is problematic in this condition and then looking for some kind of drug intervention that will correct this dysfunctional biochemical pathway.

The analogy if somebody is not following is, let’s say blood pressure is too high, let’s use a drug that alters some of the signaling of something involved in the blood pressure regulation system so that we lower blood pressure or cholesterol levels are too high, then let’s use statin drugs and just help the body make less of those cholesterol molecules. That’s how conventional medicine thinks about solving problems, but even just with what you’ve said so far with what’s going on in ME/CFS and I think you’d probably agree even that’s just scratching the surface as far as all of the findings of all the different things that we know are going wrong in people with ME/CFS.

My point is there is no one specific system and one specific biochemical pathway that seems to be the thing that’s going wrong. From my perspective, I think it’s going to be unlikely that we’re going to find a drug cure to ME/CFS. It’s possible that I’m wrong, especially if Dr. Robert Navio is right, maybe something that would block pure energy signaling. Maybe that could be some universal cure, but in my experience, I think it’s very rare to find drug cures for most diseases. Anyway, all of this is to say, what do you think of these two fundamental approaches to solving this problem? Do you think that it is likely, are you hopeful that there will be a drug cure? Do you think that that’s the most likely answer?

Cort: Well, that’s the answer I would like to have.

[laughter]

Ari: I think we’d all like to have it for everything.

Cort: As you say, this is unlikely in disease in general let alone something as complex as chronic fatigue syndrome. Now, I do believe it’s possible that a drug and I actually believe that ME/CFS will be most resolved. Well, at some point a drug will come along that will make a big difference. It’ll take a lot more research, but I just think it has to because unless we come up with some super supplement and I should say that we have a bunch of recovery stories on Health Rising and they cover the gamut.

There are people who’ve recovered using ketogenic diets. There are people who recovered using blood volume enhancers. There are people who recovered using antivirals. There are people who’ve recovered using functional medicine in which they do a whole bunch of things and they just slowly work their way out of this illness. That is certainly a possibility.

Ari: Yes, I can speak to my work in that regard and not that I specialize in ME/CFS specifically, but I certainly have lots of people that have followed my work, done my program, and used my supplements. I have with specifically ME/CFS, probably somewhere in the order of 50 to 100 recovery stories-

Cort: Oh, great.

Ari: -with full-blown ME/CFS that have fully recovered from that. Using nutrition, lifestyle modification, nutritional supplements, a comprehensive regimen of lots and lots of strategies, but that’s not to say that everyone with ME/CFS has recovered. I think that there are some people with very, very severe ME/CFS that maybe is from a combination of severe mold poisoning or mercury poisoning or I’ve had one story of a woman who grew up in England in a specific town. I forget the name of the place, but it was famous for having a lead poisoning incident in the public water supply.

From the time she was eight years old, she had insanely high levels of lead in her system, and now in her 55 years old and she’s been toxic in lead for 40 years. I think there are scenarios like that where it’s probably very difficult to get back to the level of health that you were in your pre-eight-year-old self, but all of this is to say that I do think recovery seems to be possible for a large number of people.

Cort: Yes, I’m not sure what to say. You’re getting a lot of recovery stories so that’s great. On the website, I deal with so many people who have tried so many different approaches and nothing has worked. Maybe they’re just not, and I’ve tried so many different things and I am always hopeful that maybe I’m just missing something. That I’m missing that essential ingredient and one of the challenges really with the functional medicine approach is that there are so many different things to try. Certainly, we have stories on Health Rising where people, they put the right endpoints in and they’ve done their pacing, and they’ve been careful with their diet and they just worked their way out of it.

It’s amazing really to go from such a functionally debilitated state to health and it seems like some people, they get to a point, and all of a sudden they turn. There’s somehow it’s all come together and there they are. With me, I’m pretty mild relative to most people. For many people, it’s a problem of money getting the right help, and certainly, your courses can really help with that since they are available online. It’s certainly worth a try by certainly. It actually makes me think I should try.

[laughter]

Ari: Well, happy to help out and one thing I don’t advertise, you mentioned people financially struggling there I don’t necessarily advertise this, but I guess I am now, people who are in financial difficulties, if they provide some evidence to that, bank statements or something to that effect, we never turned someone down who was in need of the course, but can touch. Anyway, we talked about some cardiopulmonary deficits, you mentioned mitochondrial dysfunction. I know you’re familiar with Dr. Robert Navio’s work around the metabolomic studies and the cell danger response and all of that.

What is your opinion about the idea that there’s a hibernation aspect of what’s going on in terms of the physiology of people with ME/CFS.

Cort: I think it’s a fascinating idea. Intuitively it kind of fits. It’s interesting because it’s coming at the problem with energy production from a different angle, and it’s finding the same thing and that is these metabolic studies where they assess the metabolites in the blood and the urine. They also suggest that people with ME/CFS are in a hypometabolic or a hibernation state. Naviaux has been a real leader here with the cell danger response, and interestingly, the mitochondria being the quick alert, providing the quick alert system for the body. I think it’s a very viable hypothesis.

Some researchers from Australia, Neil McGregor, and Chris Armstrong, they’ve been doing metabolomics studies for quite a while. They have found that people with ME/CFS are preferentially using amino acids for energy, that they’re not doing well with carbohydrates, which again are the glucose which provides quick clean bursts of energy. For some reason, their results indicate that people with ME/CFS are breaking down their muscles to produce energy. It’s an inefficient way to produce energy.

Then there’s Marian Lemle who, gosh, 10 or 15 years ago, she came up with the hydrogen sulfide hypothesis. She got that out of looking at hibernation presentation. She got onto that. That’s being studied at John Hopkins right now. I think it’s a very interesting hypothesis. I should mention that the metabolomic results they mirror what happens with people who are starving. When you’re starving, you go to your muscles to produce energy. For some reason, that seems to be happening in chronic fatigue syndrome, and that’s actually driving with some of the mitochondrial results, which suggests that the electron transport chain is working okay, but the point right before that is broken.

In your program, how do you attack this hypometabolic problem? Is there a specific strategy to deal with that or?

Ari: Yes. I think what I was getting at a minute ago when I asked you about these two fundamental approaches to how people approach and think about solving health problems. I think there’s a real important dividing line. There are different levels of analyzing and understanding a problem, and when you analyze and understand the problem in a totally different way, you’re going to arrive at different solutions.

I’ll give you an example. Let’s imagine two different people who are trying to farm land. I’m writing a script for a video I’m about to film. People listening might hear me talk about this in another video, but let’s imagine you have two different groups of scientists who are trying to farm land and make it as productive as possible. One of those groups of scientists has a very naturalistic paradigm and appreciation for nature, a desire to mimic nature and nature’s ways of doing things, and the other one says, “No, nature smature.”

We can use modern technology and modern science and do way better than nature can do. For example, we don’t have to rely on manual labor to plant all the seeds in the ground and irrigate all the things and put chemicals on the crops. We can just automatize that and use machines to do it all by just planting the same crop. On this whole field of 100 acres, we can just plant one plant instead of a diversity of plants like it’s in nature. You can just do one plant, right?

Cort: Modern agriculture.

Ari: Right. We only farm soy, or we only farm corn or something like that. Great, it is hyper-efficient in many ways. You don’t have to use so much manual labor. You can use machines to plant and to harvest and so on, but then you run into certain problems. You find, oh, those methods are depleting the top soil, and they’re heavily depleting the soil of minerals.

Because there’s no diversity of plants, now, the plants are very susceptible to pests. They say, “Oh, no problem. Science to the rescue, we’ll just create chemical fertilizers that replenish the minerals and we’ll create chemical herbicides and pesticides to deal with all the weeds and pest problems that we’re getting. Problem solved. We’ve got our chemical drug solutions to all of our health problems of our field.”

Then you discover there’s other problems. Now, all these chemical fertilizers and herbicides and pesticides are running into the rivers and the lakes and the oceans where they’re wreaking havoc on the wildlife, where they’re bleaching the coral reefs and disturbing the whole ecosystem of the entire planet. Now you have other groups of scientists trying to develop drugs to solve those problems.

There’s a whole cascade of problems that emerge because you didn’t start from the right set of assumptions, but there’s another way of doing things, which is to replicate nature to use more permaculture systems that rotate the crops in a certain way that use a diversity of plants that minimize, that make it so you don’t deplete the top soil, you don’t deplete the minerals in the soil and you make everything resistant to pests. You don’t wire all of those chemical inputs that led to all of that whole cascade of problems on the whole planet.

These are, in my mind, two fundamentally distinct problems. Now I start with an appreciation for nature. Just as if you break a bone or you smack your head or you smash your toe on something, or you fall off your bike and scrape your skin, your body has a natural drive, an innate drive to heal itself to recognize where there is damage and to heal itself, but it does that a lot better if you provide it with the right inputs. If you don’t provide it with the right inputs, then it doesn’t heal very efficient.

Routine infections, I just moved to Costa Rica recently, and I heard stories of people who are living in poverty, who don’t have the ability to give their children with routine infections, with diarrhea, with common cold, with flu, they don’t have the ability to feed them proper nutrition. You have little kids, one, two-year-old kids who are dying from common colds and normal childhood infections just because they’re not given the proper inputs that their body needs to be able to recover from that injury, that stressor, that insult.

I fundamentally conceptualize things from that paradigm, and I think that’s, in general, a good guiding paradigm. My fundamental question is basically how can we provide all of the right inputs for human physiology to thrive and work at its optimal? Anyway, I’m talking too much in your interview, but that’s how I conceptualize thoughts.

Cort: There are some really interesting techniques, and I wonder what you think of some of these, and some of these interesting nutrient delivery systems. There has been some like Nancy Klimas at Nova Southeastern. She’s experimenting with a two-drug approach that’s staggered overtime to get at the neuroinflammation and the stress response problems in chronic fatigue syndrome, but she’s also really interested in finding other ways to calm down neuroinflammation, one of which is through inter-nasal glutathione, and I believe she’s interested in inter-nasal insulin. I don’t know if you’ve tried those.

That’s an interesting way to perhaps get stuff into the brain. There’s increasing evidence of neuroinflammation in chronic fatigue syndrome, which could be at the heart of all of this.

Ari: I was going to ask you about the brain component. In my experience, I’ve seen people with ME/CFS,

I’ve seen them recover from nutritional interventions, and circadian and sleep interventions. I’ve seen them recover from mitochondrial-targeted supplements. I’ve also seen people who haven’t had a lot of success with those things but who have had amazing success where their big key was actually the brain-based interventions, was learning [crosstalk] techniques and other techniques and all key-based techniques to calm the negative thought patterns and the strike that’s going on in the brain. I’ve seen people say, “Nothing’s worked for me except these brain-based modalities.” There are certain people out there that group their program and a few others that are doing very brain-focused programs. I think for a subset of people, that’s quite effective.

Cort: Sure. Yes. I agree. We have some stories on Health Rising. It’s a touchy subject, but there is something going on with the stress response system. I feel it. I intuitively feel it. This fight or flight system that just will not quit. There’s physiological evidence to back that up. The limbic system of the brain, hyperactivated, hypervigilant. It’s there. It’s there for me. I don’t know where it comes from. It’s not a psychological. It came with chronic fatigue syndrome. When I got chronic fatigue syndrome, it came with it. This hyped-up, difficult to relax, difficult to rest and digest, difficult to get the parasympathetic nervous system going.

I think anything that can calm the fires down is helpful. I just intuitively feel. I actually feel that if I could get that under control, I would be in really good shape. I have actually worked at these things for a while. I don’t know if it’s because I just work too hard or I’m too driven. If I could just relax for six months, I don’t know. [laughs]

Breathing exercise for people with CFS ME

Ari: They’re good [unintelligible].

Cort: They’ve had just enough success to keep me going, but not enough to get me there.

Ari: There’s some interesting research on people with Type A, “self-critical perfectionist personality types” who tend to be very driven. These people who are very perfectionists. These people who tend to have a lot of thought patterns beating themselves up over things. They have a higher propensity for both burnout as well as ME/CFS. When I was listening to you talk there, I hear someone who’s very driven to work hard and I think probably a lot of people with ME/CFS would identify with that.

Cort: Sure. Really, in addition, how can you not be so critical when you’re out of the workforce, when you’re not bringing in money? You’re not doing the things that provide status in our culture. You have that laid on top of everything else. It’s a tough row to hoe to not be working, to not be productive. That comes with its own baggage. There’s its own stress. There is own stress overlay from that. I really think that these subconscious impulses, I think they’re part and parcel of the disease. I actually think they’re probably part of the sickness behavior response that gets triggered when you have a cold, which is designed to isolate you. It’s designed to have you conserve your energy.

I think it’s all packaged together. Plus, in ME/CFS, there’s a problem with energy production. I think there’s probably a problem with the blood vessels delivering enough blood flow to the muscles and to the brain. We just had a fantastic study last year. Really, a seminal study which showed that everybody with chronic fatigue syndrome, not just people who’ve been diagnosed with Pott’s or neurally mediated hypotension, everybody with chronic fatigue syndrome, when they stand up, they have reduced blood flows to the brain. Then there’s the CO2 thing that shows up, low CO2 levels.

Now, I’m wondering whether these breathing techniques that can raise the CO2 levels, whether that’s a viable option. I’m looking into that too. Wouldn’t that be nice to have–?

Ari: Yes. People were talking about Buteyko breathing, some advocates of Buteykobreathing, who have– I’ve actually seen some articles where they make reference to working with chronic fatigue syndrome patients and saying they found remarkable improvement by doing these breathing techniques. Unfortunately, I think when I actually went find the research, the actual peer-review publication, I think I wasn’t able to find anything. I think there’s certain claims floating around out there. As far as I can tell, I haven’t been able to actually locate the actual studies, but it’s possible especially given what you said, that there is low CO2 levels.

For people listening, Cort mentioned this earlier but, basically, there’s something called the Bohr Effect, B-O-H-R if you want to look it up, that has to do with how CO2 levels impact on the ability of oxygen to be released from the red blood cell [unintelligible] around in blood so that that oxygen can get into the cell. This is a counterintuitive thing for most people they hear like, “Why would I want to raise my CO2 levels? Isn’t CO2 just this waste product that I want to get rid of?” Well, in reality, CO2 plays a very important role in allowing for oxygen to be delivered effectively to the cells.

If you don’t have high enough CO2 levels, that doesn’t happen as efficiently. If you can’t get oxygen efficiently into the cells, obviously, you get problems with energy production. Anyway, just a background to help people understand it. I do think it’s possible that these breathing techniques can make an impact.

Cort: I’m sure you’ve heard of Wim Hof because with cold immersion and breathing techniques– I read a book written by somebody who worked with him and he brought all these middle-aged, out-of-shape people, some of them with some serious diseases. They climbed that mountain in Africa.

Ari: Kilimanjaro.

Cort: Kilimanjaro. He was told that he was going to lose some people on that trip. [chuckles] Actually, they actually survived, and they did very well. There’s this idea of cold immersion. Cold, as I understand it, activates the parasympathetic nervous system. There are some studies that show that brief periods of really intense cold immersion can help fibromyalgia, so maybe this is another way to approach this and to make some progress. Maybe if you get all of this stuff together, then you can shift the whole system, start to shift the whole system back to health, as you have been able to do.

Ari: I think the words that you used there to “to shift the system” is appropriate there because what we’re talking about is hormetic stress. It doesn’t work to just activate the parasympathetic nervous system. There’s some, actually, confusion around Steven Porges’ work around ventral vagal and dorsal vagal and that sort thing. There’s a part of the vagus system that cold exposure does activate, but it’s not really a relaxation response. It’s actually a stress response.

Cort: Oh, really? Oh, interesting.

Ari: Yes. Just like sauna exposure, just like exercise, and a number of other hormetic stressors, breath-holding, as well. Wim Hof is combining cold plus breath-holding, both of which are stressors. This is actually a big topic that I talk a lot about. I’ve also had the pressure of talking in person with Dr. Robert Naviaux about, and I don’t want to put words in his mouth, but he agreed with the basic principle of my thinking that hormesis or hormetic stress is an important aspect of helping the body to relearn a new setpoint of how to regulate itself. If these temporary challenges or stressors can help, as you said,

used the words to shift the system in a certain way.

It’s counterintuitive for a lot of people because you think if I’m unwell, I want to avoid stress. The reality is that in order for the system to learn how to regulate itself, it actually requires some input of stress to learn the appropriate way to regulate itself and to have the resilience to stress. If it’s never exposed to stress, it can never learn how to be resilient to stress. The challenge, obviously with people with severe ME/CFS is getting that dose right. Some people are so sensitive that even a small dose can send them into a bad place. That aspect of things is certainly a challenge, but I do think hormetic stress is a key aspect to healing.

Cort: Interesting. It makes sense to me. Nancy Klimas has done these, using these supercomputers, created these models of how people with ME/CFS systems have shifted. They indicate that they’ve shifted in this sub-optimal space, but that they’re embedded in this space. She shows it like there’s a hill, and then they’re down in this space. Their whole system has shifted this way. You have to climb the hill in order to get back to the optimal space. It suggests that it takes some real work. The system is stabilized. It’s not in a good place, but it’s stable. It’s going to take some work, which sounds like a stress thing.

Actually, I know somebody, his name is Dan Marcole, who had a terrible case of chronic fatigue syndrome. His limbs would flap around. He was told that his nervous system had just forgotten how to handle his limbs. He has a really interesting success story because he was so ill and he actually just used yoga and meditation and very, very careful, very slow exercise. Very slow. You wouldn’t even call it exercise, but he just slowly over time, he returned himself to health. It did require stress. It did require very small, very finely tuned additions of stress until they got bigger and bigger, and finally, he was able to– I think we would all love to do that. It’s just so hard. I’m sure every time I take my dogs out for a walk, I feel compelled to get them some exercise. I’m just pushing it a bit too much. It takes real discipline to do that.

Ari: Yea, and finding your personal correct dose for these things also [crosstalk] a lot of discipline. Not overdoing it, especially if you’re a very driven personality, you tend to overdo it.

Cort: [laughs] Yes. This drivenness, I think it actually comes with chronic fatigue syndrome. I don’t remember being driven like this before. I think it’s just [unintelligible 00:53:32]. It’s a weird thing. Your energy is depleted and yet you feel driven. It’s just the oddest alive and tired thing. It’s just the oddest thing.

Ari: You’re also maybe an interesting– I don’t know how unique of a case you are in that regard that you’re talking about, but you’ve found your passion obviously. Trying to help advance our understanding of that ME/CFS and help people with this condition is obviously a big driving motivating factor for you, as far as your own personal purpose and mission in life.

Cort: Yes, it is. I was lucky that way. I was really lucky that I was interested in science. Of course, there’s this huge thing that changed my life utterly. I was able to combine the two and still work, which is good. It’s good and it has its downside too because like I said, I’m driven.

What COVID means for people with CFS

Ari: Cort, do you have any thoughts on long COVID? I know you mentioned this at the beginning, but do you have any thoughts on long COVID and how that ties into ME/CFS just as far as all the funding coming into the research community to fund long COVID, and how that relates to ME/CFS? Is there anything else you wanted to say on that?

Cort: Yes, really just to stay tuned. I’m covering this subject heavily on Health Rising because, as I said, I think this is the breakthrough that we’ve been looking for. It will help. The more we understand about long COVID, the more options for allopathic medicine to treat it allopathically. Some of the things that have shown up, one really interesting finding from Avindra Nath who’s already studying chronic fatigue syndrome. He’s been doing these intensive two-week dives into ME/CFS physiology. He’s looking at exercise. He’s looking at the brain. He’s doing all these blood tests. It’s really an amazingly intensive study. He’s now carried on that study to [unintelligible] illness and to long COVID.

What he found that was most interesting was he did autopsies of our COVID patients who died most of whom, interestingly enough, had mild symptoms apparently before they suddenly died. He found leaky blood vessels in the brain. He believes that, depending on where those leaks occur is where he thinks the symptoms is– The different symptoms he’s finding correlate to the position of the leaks in the brain. The interesting thing about that is about 20 years ago, researchers, it was one of the first findings in chronic fatigue syndrome, they found evidence of these same leaks. They’re called punctate hypoperfusion, I think. They were scattered all over the brain. They couldn’t figure out what was going on because they were in different places and different patients. There was just no pattern that they could discern, and they just gave it up.

Maybe Nath is right. I experience these really hot muscle feelings if I exercise too much. Maybe there’s a part of the brain that my blood vessels are leaking that corresponds to that. They found potential problems with the microcirculation and potential problems with the brain stem. The brain stem is another really interesting avenue in ME/CFS and problems with the midbrain. I think that’s just the beginning. He’s going to get those patients on a bicycle and he’s going to exercise them. It’s going to be really interesting to see what he finds out. I think we can take heart. Both long COVID and ME/CFS patients can take heart.

Ari: Yes, absolutely. I have one more question for you. I think we’ve talked in this podcast about a lot of different aspects of the disturbed physiology, the abnormal physiology that’s going on in people with ME/CFS. We’ve talked about or hinted at many different treatment modalities that people can use, and even some portion of people have recovered from. If you were to say to individuals listening to this with severe chronic fatigue or ME/CFS, if you were to say your three pieces of advice for them as far as with everything you know, if you could distill it down to your top three pieces of advice to help people? These could either be specific strategies, “Do this.” Or, “Don’t do this.” Or just how to think about, a mental frame for how to approach it.

Cort: Boy, that’s an easy question. For the severely ill, first of all, I would just say, don’t give up hope. Do not give up hope. In fact, we’re going to do a series called Ending Suffering, which is designed to find ways to reduce the suffering just so people can keep going. Suffering, just being pounded by– It’s just so difficult, it is so difficult. How anybody with severe ME/CFS, or even ME/CFS doesn’t have a severe case of depression, I don’t know, because almost everything has been taken away. When you can’t function it just takes away so much. A lot of people, they can’t even watch TV. Some people, they can’t listen to music.

The state that some people end up in, I think it’s been hard for the medical profession to handle because they just don’t see it. They don’t see it much. Not in younger people who are healthy and functioning well, who don’t have cancer, and aren’t about to die. They just don’t see it much. Find a way not to give up hope, and find a way to combat just the depression. You look ahead and you just don’t see a positive future. That’s weighty stuff. That’s weighty stuff. You can find a way to find some appreciation and some peace, and just somehow come to grips, even just with a neutral position to the illness. Just a neutral position. I think that would be very helpful because that’s just quite a stressor in itself. Like you say, there’s no protocol that will reliably work with the severely ill.

The other thing would be to try as many things that are not drug-based because they can have really negative effects, and some people get themselves in real trouble. If you’re severely ill, you could probably get yourself in real trouble. Have somebody, get some people around you who can look at all the different options, from diet to blood volume. We did a blog on blood volume and there are some really good, inexpensive ways to increase your blood volume. That in itself can be helpful. I know people with severe ME/CFS that, just delving into this, delving into the many different treatment options, it’s just overwhelming.

Diet, I would cut out the carbs as much as possible and see if that works. I would try these breathing exercises. We’re going to have a blog on that coming up. Then I would give your protocol a try. These are safe things to do. People who are severely ill are very sensitive but these are generally safe things to do. Then I would just keep up on the science because things are happening. Who knows what’s going to happen over the next couple of years? Who knows?

The NAH started this, I think it’s a $170 million exercise study to find out what’s happening at the molecular level with regards to exercise and the body. Here we are with this huge exercise problem. Do you think we’re not going to learn a lot that we may be able to apply to fight ME/CFS? That study is a couple years old. It’s not one study it’s hundreds of studies. Yes, the future is brighter now than it’s ever been, okay? It’s not easy but it’s brighter now than it’s ever been so hang in there. Just hang in there.

Ari: [crosstalk]. Cort, this has been very, very enjoyable, it’s a pleasure to finally connect with you after, again, spending several years reading all of your articles. To everyone listening I highly recommend you go to healthrising.org, sign up for Cort’s newsletter. He’s constantly staying abreast of the latest science that’s coming out on ME/CFS and providing really excellent articles with commentary and research, and putting it into context of all the other research. Highly, highly recommend you go to that website, sign up for that newsletter, and just follow all of his work.

Cort, is there anything else you want to say as far as where people should follow your work or anything to that effect?

Cort: Yes, just subscribe to the newsletter. We are coming out with some programs, with a new program. One of the aspect, if it fits, the first part’s called Lives Interrupted, which will help people get a real understanding of the financial costs that people endure having ME/CFS. It’s also part of this big map project where we’re going to provide ways for people to contact each other locally and put themselves on the map, and put resources and doctors on the map, and rate them, and interact even if they want to date, or things like that. That’s coming along over the next couple of months.

Also, keep an eye out for our Ending Suffering project. We’ll probably use some stuff that you’re doing because you’re looking into how– I haven’t seen it, but you did something, how beliefs affect biology. We have this story on the website. This woman who had this autoimmune illness and she did all this mindfulness, yoga, meditation. At the end of the year, her immune scores had gotten much better, and she was much more functional. She wasn’t healthy, but it really helped.

Ari: Awesome. Cort, thank you so much again. Really a pleasure to have this talk with you, and I really enjoyed connecting with you in person, or in realtime, I should say. You’re obviously staying on top of all the latest research that’s coming out. As new stuff comes out, that’s exciting, that you’re finding, and that you’re doing analysis on, please reach out to me. I’d love to have you on the podcast again and to discuss all the latest stuff as it emerges. Thank you so much, and look I forward to doing this again with you, hopefully in the near future.

Cort: Thank you. Thank you. It’s been a real honor to be on the program. I appreciate that you reached out to little Health Rising, so thank you very much.

Ari: Thank you again for the work that you’re doing, just helping people with ME/CFS. I really appreciate it. I think a lot of people have benefited from your work tremendously, so thank you for that.

Cort: Thank you. Thank you very much. Yes.

Ari: Talk to you again soon, Cort. I hope.

Cort: Okay. Good.

Ari: All right, bye.

Cort: Good, good. Bye-bye.

Show Notes

How people with CFS/ME are affected psychologically and metabolically (6:55)
The physiological abnormalities in people who suffer from Chronic Fatigue (15:17)
Breathing exercise for people with CFS ME (41:30)
What COVID means for people with CFS (53:15)

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