Nancy Klimas, M.D., Director of the Institute for Neuro-Immune Medicine at Nova Southeastern University and the Director of Environmental Medicine Program at Miami VA Medical Center, talks about an illness that causes extreme fatigue and brain fog.
Interview conducted by Ivanhoe Broadcast News in October 2016.
Obviously you’re an expert in chronic fatigue syndrome, what is chronic fatigue syndrome if you had to explain it to someone, but what is it and why is it so misunderstood?
Dr. Klimas: It is an illness that involves inflammation in the brain. In Europe they call it myalgic encephalomyelitis; in this country we recently put the slash, ME/CFS, to try to better explain that this is not just a fatigue syndrome. It is an inflammatory condition in the brain that affects a lot of different things. For instance, it affects how you think, it affects your cognition, it affects your hormone regulation, and it’s inflammatory so your immune system is involved. Because it’s in your brain, all these neural peptides up there, that are supposed to be regulating everything we do, get a little bit fuzzy too. Even things like blood pressure control or the rate of your gut motility can be affected by this.
Is it common in this country?
Dr. Klimas: It’s far more common than people think. There are about a million people in this country with this condition, far more likely to be women. Around one in 150 women have this condition. In men, around one in 300 have it; maybe just a little less than that. But, it’s far more common than people think. It is terribly misunderstood. I’ve been doing this since 1986, and I feel bad because truthfully I don’t see a lot of progress in the number of clinicians that know what to do with this. It’s not in most medical school curricula to this day (it is at NSU). These patients suffer mightily not just from the illness but trying to find an expert that can help them. I feel we, as medical educators, have fallen down; we haven’t done our jobs. If we had, there would be a whole generation of doctors who said, “Oh yeah, yeah I know what that is. I know what to do.”
Is it just misunderstood or is it misdiagnosed?
Dr. Klimas: It’s kind of complicated. ‘Chronic fatigue syndrome’ was the first label. It got known as all kinds of silly things. The yuppie flu was one the early names of this thing and people were dismissed as whiny. It was so misunderstood, it was ridiculous. Multiple sclerosis is a wonderful example. MS was called hysterical paralysis; that was its original name before we had a CAT scan. Doctor after doctor sent people with paralysis out of their offices telling them it was all in their head. So it took a CAT scan to get that transition. Where we are with ME/CFS is sort of the same; we’re way beyond this being a fatigue syndrome. It’s certainly not some aberrant depression or psychiatric thing; it’s a biologic condition. The Institute of Medicine put out a report last year that said that categorically this is a biologic condition. It’s real, it’s serious, and it needs to be treated with a serious response. So that’s good news. Now there are beautiful pictures of the brain, with new technology, that let us look at inflammation and the brain is inflamed and “lit up.” I don’t need more than that, that’s an inflammatory condition, it’s serious, it’s real and it’s really messing people’s entire systems up. It affects everything in their regulatory system, from breathing, gut motility and blood pressure to hormone control, immune control and all of those things. We’re treating it very seriously. Nova Southeastern University has assembled a remarkable group of researchers to try to approach this from a variety of angles. We’re so lucky to be here at Nova Southeastern University because they really invested in us. We were sort of scattered around the country and we had the opportunity to write a great big grant together and we said, “Wouldn’t it be fun is we were all in one place?” It was just at the point when I was moving universities and I said, “Why don’t we try to gather the team here?”, and it worked. So we brought the computational biology team from the University of Alberta, a tremendous team under the leadership of Gordon Broderick, Ph.D. We brought Marianna Morris, Ph.D. from Wright State University, where she was running the autonomic modeling program with animal modeling; Mary Ann Fletcher, Ph.D., from the University of Miami with her extraordinary biomarker discovery in a CLIA Certified Reference Laboratory; and, my own clinical team that I brought up also from the University of Miami.
Now that you’ve all come together, what are you looking to do with these patients? What would be in your estimation the latest research or treatment?
Dr. Klimas: Here’s the deal, for years we’ve been all looking with blinders, “oh, is this an immune system problem?”, “oh, there is a blood pressure problem”, “oh no, it’s not that, it’s this”; when in fact it’s all of this. It’s integrated and our whole bodies are in a balance, a very careful balance which is called homeostasis. We are in this homeostatic space that makes us well. But when you’re sick chronically, you’re in homeostatic space that makes you sick. We perceive the cure of this ailment as trying to make this sick space go back up and land in the healthy space. It’s a really challenging thing. What we do is work with this kick ass group of computational biologists that don’t seem to be overwhelmed by a problem like that. They just think: “that’s cool, let us try”. They use some super computers and terabytes and a computational approach. We give them vast amounts of data and they keep saying, “Oh, we need some more”. It’s like “oh man, I just gave you nine million data points per patient”. When they’re like, “oh no, that’s not enough”. It’s very exciting to work with them. We dynamically model these illnesses. Chronic fatigue syndrome being one, and Gulf War illness the other that we look at. The patients are made worse by effort, so rudely we put them on a bike and we measure bloods before, during, and a lot of times after that; immediately after they exercise. We measure computational team every gene that gets turned on and off, panels of six hundred thousand probes of genes. We look at gene regulation, we look at hormones and cytokines and cells that are circulating at each point. Like I said, nine million bits of data per point and we hand this off to these people and they’re like, “oh, okay”. They begin to model something that’s so thoroughly complete that they can then do something called virtual clinical trials. Now we’re getting somewhere. Why would you gather a team like this? You have a team who in a very hypothetical way can create a trial. Not only that, they can create 250,000 trials and tell me what the top 10 choices are, which is what they do. They go through this system and they run thousands and thousands of clinical trials trying to make these balance back to normal in these systems. Then they say, “Hey Nancy, I’ve got this idea. You know what if we did this and this?”, and I say, “oh no, that would kill the patient.” The first time they ever did this to me they said, “Could we just clamp the adrenal gland for four hours?” And I’m like “no”. They are saying it in a hypothetical way since they’re like electrical engineers. They’re shutting this off for four hours and then rebooting you know. And I’m like, “okay, but the world doesn’t work like that.” The world works with gradients. We can turn something down for a while and then let it release, but we can’t turn things all the way off. So it’s pretty cool. They did all of this. What they can do then is give me the top things and then I can put it in to the next layer of trial. With Gulf War illness, we have an animal model so we can put it in to an animal study. In chronic fatigue syndrome, we don’t; we just have a laboratory cell culture model, but we can do it there and that’s what we do. Then, if everything is gelling right, boom, we move it in to human trial. How cool is it for a team that worked on all these different angles, if they were the cell culture people, the animal people or the computational people to see the end result of their game in a human in our team quickly? That’s what we do.
So are you finding because from what you’re saying from what Paula one of your patients has been telling us, are you finding because she said after she saw you she had a complete upswing from where she was because you put her on certain—–she was depleted in certain supplements.
Dr. Klimas: We can learn a lot. Maybe it’s not perfect yet and it’s not because we’re on this trajectory of trying to find that right cure. We are hell bent that we’re going to get there right. But in the meantime we’re a bunch of docs that have really sick patients and we know a lot. We know where this is going. We can apply the knowledge that we’re learning as reasonable. It’s not all evidence-based enough yet, but how hard is it to fix someone’s supplements to the point to where they’re actually feeling better? I can do that. I can do things to enhance immune function. I know a lot of tricks for that that are evidence-based. I can definitely manipulate the endocrine systems toward normal as a doc. I know what I’m doing, I’m trained in that. Now, would I say that what I’m doing today is what I’m going to be doing in five years? Probably not. Some of it, sure, but I’m going to be doing something so much better that I’m hoping will be able to flip it back. One of the most exciting things that happened for our team happened in the last few weeks. In Gulf War illness, we have an animal model that had the same exposures as the Gulf War veterans had. You then age out to the equivalent of 25 human years which is not that long in a mouse. Then we do these tricks that we were just talking about, hit the button and see if we can flip them back into normal after the equivalent of 25 years of illness and it worked. We’re very excited. The guys getting the data said: “hit this button and that button” and we went and did exactly what they said. We could take a 25 year ill model and flip it back.
Someone with chronic fatigue syndrome: does that mean they were born with this illness or something triggered it along the way?
Dr. Klimas: They’re not born with the illness; they have been born with some genetic predisposition. More often than not, some immunologically hard hit happened. Like a profound viral infection, like mono, way worse than the usual mononucleosis, or a really bad flu. They basically turned on their immune system. Now in our models it would say it is caused due to an exuberant stress response because your body makes things to quiet down inflammation, and if you overshoot that seems to be the thing that makes this chronic. If you hit the stress response really hard at the same time you have a bad virus or a great big toxic exposure like our Gulf War illness guys, that’s when you sort of fix the neuro-immune path down the chronic disease path.
And that’s kind of why Paula who was a Camp Lejeune veteran there might have been a correlation—
Dr. Klimas: They had a lot of toxic exposures. Camp Lejeune is one where the water was contaminated with compounds from the dry cleaning.
How soon do you see a total breakthrough?
Dr. Klimas: The way this is going it’s exciting. Here’s the trajectory: with Gulf War illness, we’re very well-funded and we had a four-year funding window to go from our animal model to a human trial; we’re on target. We’re starting a human trial in the next couple of months; in a three-year window we got it done. That’s remarkable. In chronic fatigue syndrome we’re actually further along in the modeling, we have no animal model but we’re further along. We could have actually been there by now but the funding hasn’t been there to back us up. So we’ve been searching for ways to do this. One of the real problems is in research of the field and particularly chronic fatigue syndrome because it had this silly name and it was put in the wrong institute. It had this minuscule amount of money and it just didn’t attract the critical mass of scientists that it deserved. It’s now trending in a new direction and they’re announcing these great big initiatives that should be in place next year. It’s been a struggle as a person from the beginning to find the base to let these great big Eureka’s move on. I mean it’s kind of interesting in Gulf War illness, they were using congressionally mandated research funds, the congress said to do it. Give them money, get it done. They created this consortia that has been just remarkable. But with chronic fatigue it’s like one grant at a time, small grant at a time, and they don’t even know when they’re to go in for clinical trials so that’s been a problem. Supposedly, that’s going to change. In the meantime, we found a private foundation that might be able to help us with our first Eureka clinical trial. We plan to be in the human trial this spring.
Well that’s a huge, that’s huge. So if someone is sitting at home when they see this and they think that they might have this illness what should they do, what is the first thing they should do?
Dr. Klimas: I have this great coffee mug says your Google does not beat my medical degree. But in this case sometimes your Google is better than the medical ignorance that you’re up against when you have this illness. I would start with going to the advocacy community online, the CDC website or the NIH website. The sites have a fair amount of information and they get a sense of whether or not your illness seems to jive with the basic illness. The big deal in this illness is exercise induced relapse, in society that’s a very rare symptom; it almost always infers a neuro inflammatory state, like MS would also have it. But there are very few illnesses where exercise doesn’t make you feel better. In this case, exercise is a wall you hit that puts you down for days. That’s a unique symptom. The other two unique symptoms are cognitive issues, what they call a brain fog. It’s all about energy. You use up all the easy energy and as soon as you have to start making it yourself you have brain fog. The other is autonomic nervous system problems. The tachycardia, fast heartbeat, drops in blood pressure. Those are cardinal symptoms that define this illness. If you have the three, there’s no other good answer. There’s a pretty good chance you’ve got this illness. The next trick is harder, trying to find an expert to care for you. The International Association for CFS/ME held its conference recently in Ft. Lauderdale, with Nova Southeastern University serving as the host university. It was a great conference. They have a website with their providers list. Honestly, in the end, it’s the advocates. They will help steer you to a good doctor in your area.
So the most important thing to take go from this is the research that you guys are doing is moving quickly, it’s progressing; you’re nearing a human clinical trial but there’s hope that if you were just diagnosed if you think this is something that you have or are dealing with or a loved one there is hope.
Dr. Klimas: There’s a lot you can do right now. If someone walked in my door they wouldn’t walk out with a: “hey, see you when the trial is over.” We’d be: “no, let me help you. You know, your blood volume is low, let’s fix that. Your nutritional situation is such that your precursors for energy aren’t there or you have way too much oxidative stress. Let’s rely on some really powerful antioxidants”, and so on. We just start picking up the pieces trying to put some of them back in to their healthiest state they can be in for right now. Then we teach them a lot about not hitting the wall. Pacing, pacing, pacing. Don’t push yourself beyond your limit. If you have this much energy, let me use half of it because otherwise tomorrow there’ll be this much energy. That’s a hard lesson to learn almost everybody with this illness. Every human being has learned at some point to push through the pain and this is not the illness to do that. You know, it’s bad.
Why have you dedicated your life to chronic fatigue syndrome?
Dr. Klimas: It’s a couple of things. The very first patient I saw struck me. I worked her up, she came to me and said, “you know, there’s something wrong with me, I’ve been to 17 doctors and they all say it’s in my head. Would you look at my immune system?” And I said, “well, that’s what I do”, so I did and I came back to her and said, “oh my God look, the cell function is lousy, and the inflammation is high, and this that and the other thing.” She burst in to tears and I thought I had devastated her when in fact I had told her there was something real. She was so relieved. It struck me. Then I listened to her story, which was appalling, that they had dismissed her. My feminist soul went nuts. I just could not deal with the thought that there are women out there being treated this badly. One patient makes five, which makes 15, which makes more and more. I wrote a paper at about 30 patients very early on, and it made me an instant expert because there wasn’t any other paper. Then they started trekking and before you knew it, I was the mecca.
Dr. Klimas: It’s been a very rewarding career. I mean it’s really awful to think that during Hurricane Andrew we did a little study where we looked at people who were in South Florida where the Hurricane was bad and in South Florida where it hadn’t been touched. We just looked to see what happened to their illness, to see if it was stress related relapse, and we did. People trying to do super human feats without any real substance relapsed. And, the people up here in Ft. Lauderdale weren’t touched at all. But underneath that, in that workup, I did a PTSD assessment because I thought the hurricane might cause PTSD. Well, it turned out the people up here in Ft. Lauderdale had PTSD. It was doctors telling these people that there was nothing wrong with them causing PTSD to the point where it was a recurring nightmare. I mean, it just galvanized me, I said “Holy Moley, if the one thing I did in my career was make that stop, that would be something.”
END OF INTERVIEW
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