Beyond Tired: Understanding ME/CFS

Dr. Aimee Nefcy shares how myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affected her career as an emergency physician and how validation, pacing, and targeted sleep therapy changed her trajectory. We explore misdiagnosis, harmful advice, and practical steps that may help.

• Post-exertional malaise (PEM) as the defining feature of ME/CFS
• Dysautonomia management with salt, fluids, compression, fludrocortisone
• Why GET and simplistic “just exercise” advice can harm
• Wearables as trend tools alongside formal testing
• Incremental gains with low‑dose trials and supplements
• Validation over dismissal in clinical encounters
• Potential overlaps between Long COVID with POTS, hypermobility, MCAS
• Using IOM 2015 criteria and Bateman Horne clinic resources
• Pacing strategies for physical and cognitive load

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Chapters

• 0:00 Welcome And Framing The ME/CFS Debate
• 4:30 Early Symptoms, Work Stress, And Sleep Findings
• 10:45 Iron, PLMD, And The Limits Of “Fix The Lab”
• 17:30 Dismissed As Fibromyalgia And “Just Stress”
• 24:40 Orthostatic Intolerance, Tilt Tests, And Dysautonomia
• 32:20 Small Fiber Clues, Temperature Swings, And Wearables
• 38:30 Post‑Exertional Malaise And Learning To Pace
• 46:30 Career Impact, Stopping Work, And Aggressive Pacing
• 53:40 New PCP, Salt, Fluids, Compression, And Fludrocortisone
• 1:00:30 Fragmented Sleep, CPAP Limits, And Trazodone Benefits
• 1:07:10 Low‑Dose Aripiprazole, LDN, And Pragmatic Trials
• 1:14:30 Patient Communities, Supplements, And Incremental Gains

Transcript

Michael Kentris: 0:00

Hello and welcome back to the neurotransmitters. I'm your host, Dr. Michael Kentris, and today I am very happy to introduce our guest, Dr. Amy Nefsey. And we're talking about something perhaps a little controversial today, but I think that we might run into more than we expect the diagnosis or entity of myalgic encephalomyelitis or chronic fatigue syndrome, depending on which literature you're reading. Dr. Nefsey, is it okay if I call you Amy for for our conversation today?

SPEAKER_00: 0:30

Please.

Michael Kentris: 0:32

And you have a very unique perspective. So if you wouldn't mind, just give our listeners a little bit of your background and kind of how you came to be intimately familiar with this syndrome.

SPEAKER_02: 0:44

So I'm an ER physician. I'm actually, well, I'm double boarded. I do uh toxicology as well, which is a common subspecialty for EM. So I did my training in Detroit. Uh that was uh in the early 2000s, and um and I did med school there as well, and then I uh have kind of hopped around with practicing since then. Had uh my toxicology training was at the Detroit Poison Control Center, so um, and did that for a few years as well. Um, so I have uh a lot of nerdy uh trivia knowledge when it comes to uh medicine and um a lot of pharmacology and things like that. So um I was working during the pandemic in an area outside of Lansing, Michigan, a small rural critical access hospital that had very few resources. And, you know, we were overworked and understaffed, just like every other place during the height of the pandemic. So when I started getting tired, I thought, you know, I work nights and uh there's a pandemic going on, you know. Of course I'm tired. And that was in early 2021, but it just continued to progress and it got worse. And I uh I remember complaining to my PCP that year about just like a pressure right behind my the middle of my forehead that was fogging my thoughts and making it difficult to concentrate, and I was, you know, like losing words in the middle of a conversation, um, and you know, forgetting what I was going to say and things like that. And then I also develop not anhedonia per se, but just like I felt too tired to do any of the usual things that I would do in my spare time. You know, I I do arts and crafts and just little things with my hands, and I'm a fiddler, you know, and I like to fiddle with little things and I paint. So I stopped doing that because it was just like the thought of having to concentrate on it was exhausting. I stopped going on trips, you know, because there was just no motivation, and I was working so much that all I wanted to do when I was home and not working was just to veg out on the couch and, you know, binge Netflix. Um, and you know, my PCP, she she did all the usual things to start with with fatigue. It's got obviously a big differential. You know, we started with like vitamin D and B12 supplementation, and you know, she increased my surcharine, which I had been on since residency, uh, at a low dose. And we tried that for six months and did not feel any better. And in fact, it was feeling worse. And so I so she switched me to a new antidepressant, and we cut out all of the medications that I was on that could possibly be causing, you know, any kind of CNS effects. Um, like I stopped, I was on Montalucast, so we stopped that. And she had suggested going to get a sleep study, but I was, you know, like I don't have a sleep problem. I sleep just fine, you know. But eventually things did progress and and got to the point where nothing was helping. And so I did. I went to a neurologist and I got a sleep study. And when I got the results, I was floored because I thought I had the answer to why I was so tired. It was positive for periodic limb movement disorder, where I was having micro arousals up to 75 times an hour.

SPEAKER_00: 4:55

Wow.

SPEAKER_02: 4:56

With, you know, basically no deep sleep at all. Uh, you know, I did some reading about that and found out that it's associated with iron deficiency. And of course, once I checked my ferritin level, it was very low. It was 17. So started iron supplementation orally and did that for about I'd say three or four months, and it just it didn't, it didn't budge my ferritin at all. So I have GERD and I'm on a PPI, and I thought, you know, maybe I'm just not absorbing it, you know. I even tried taking it with vitamin C to enhance absorption and just was not doing anything. I I did uh decide that I needed to ramp up what kind of help I was getting. So I went to the local academic center, the university, and saw another sleep neurologist. And she was like, Well, have you done an iron infusion? And I said, No. So she did that, and I again thought, this this is it, this is what's gonna fix me finally. And um, I waited a month after I got the iron infusion before I messaged her and said, I really don't feel any different. When when is this supposed to kick in? Um, and it didn't. So uh, but my ferritin levels have been fine ever since then, and that infusion was almost two years ago, and I have continued to get worse. And by that point, I had looked at what the differential was on fatigue and had seen chronic fatigue syndrome in there, but I dismissed it because it includes some things like orthostatic intolerance and what's called post-exertional malaise. And I thought I don't have any of those symptoms. So, you know, I didn't think that it was that. But as I continued to not improve, my sleep neurologist said, you know, kind of as like an offhand comment at one point, she was like, Well, maybe you have chronic fatigue syndrome, you know. So I started thinking about it more seriously. By that point, I had seen quite a few physicians. I saw a rheumatologist because at one point I had a positive ANA because we were doing all the lab tests and you know, nothing was really coming up positive. I didn't have symptoms of a rheumatologic disease, but I thought maybe it would be worthwhile to see rheumatology. And I uh spoke to a very nice fellow who was uh, you know, attentive and listened to me and um asked good questions. And when I was done telling my story, she sat back and said, you know, um this is fibromyalgia. And I was flabbergasted because, you know, when I did my training, fibromyalgia was a pain syndrome, you know, and it was considered to be psychosomatic. So when I did my training back in the early aughts, where, you know, it was felt to be due to uh dysregulated pain sensation. You know, that was when you did like the the 18 touch points to see if there was sensitivity. And those patients, whenever I had seen them in the ER or in the urgent care, they were always very, they were annoying, to be honest. You know, back then I didn't have any sympathy for them because we treated them like they were drug seeking, you know. And when she said fibromyalgia, I my my instant reaction was rejection, you know. No, I don't have a psychiatric disease. What I have is real, there's something going on with me. And then the next response was that doesn't make any sense. I don't, I don't have pain, I just have fatigue, you know. I just I'm just tired all the time. I don't have any energy. And by that point, it was all still mostly a mental fatigue, you know. And she looked at me very kindly and and explained all the reasons why she thought it was fibromyalgia, you know, the association with IBS and the symptoms I described. And and I said, Don't you think it's possible that I have chronic fatigue syndrome instead? You know, uh I think that makes more sense as a diagnosis. And she didn't really answer me, but kind of doubled down on the fibromyalgia. And the attending came in and basically said, you know, you you've got too much stress in your life, you need to find another career, you know, quit emergency medicine. It's you gotta get rid of all the stress in your life, cut out the all the toxic people, go do yoga, learn how to meditate and and you know, stop doing CrossFit. You should you should go do water exercise with the little old ladies.

Michael Kentris: 10:06

Some helpful recommendations, I assume.

SPEAKER_02: 10:09

Yeah, it was very uh it felt belittling to me and my symptoms, you know, very flippant kind of advice. And you know, who who can change their entire career after basically dedicating their entire life to medicine? You know, for 15 years I did training, you know. It just it yeah. But I didn't want to be a bad patient, and um, and I had started noticing that doing the CrossFit was making me feel bad, like physically bad. I would get during the workouts, I would get to the point where I my heart was pounding so hard. I wasn't really breathing heavily, so it seemed odd that I was having to like lay just lay down on the floor, spread eagle, you know, just trying to recover right in the middle of a workout, and they were only like 20-minute workouts.

Michael Kentris: 11:04

Now, I just want to clarify. So, like during the time, like in the height of the pandemic when you're being overworked, you're still doing regular CrossFit exercise.

SPEAKER_02: 11:14

Yeah, because I had seen multiple physicians who said, your problem is that you don't exercise enough.

Michael Kentris: 11:20

Is that right?

SPEAKER_02: 11:21

Yeah.

Michael Kentris: 11:22

Interesting.

SPEAKER_02: 11:24

And they told me that I needed to lose weight, and they told me that I needed to go do yoga and learn how to meditate and all the usual things that get told to people who have, you know, chronic, poorly defined, vague symptoms. You know, go do yoga. Yoga will fix everything. Well, let me tell you, I tried yoga. I switched from doing CrossFit to doing the water exercise with the little old ladies. I did what she told me to do. And the water exercise was, of course, ridiculously easy. I didn't find it hard to do at all. I wasn't getting lightheaded like I was during CrossFit. So I thought, you know, oh yeah, you know, this is a better fit. But I also felt like I wasn't, you know, getting any benefit out of it. But then as things continued to get worse that summer, which by that point, this is in the summer of 2023, um, I started noticing that it was getting harder to go up the stairs. I would get very lightheaded at the top of the stairs, and my again, my heart would just be racing. I wasn't short of breath. And then um I started feeling like a heaviness across my shoulder girdle, you know, uh over the back of my neck, and um my arms and legs would just feel weak. And um one point it got to the point where I felt like just going up the stairs, I felt like I was gonna pass out. So I got a home heart rate monitor to wear and to keep track of things, and I noticed a very distinct difference in my heart rate ranges between laying down, sitting up, and standing up. So I thought, okay, this is what orthostasis is, you know. And um, so I went back to the neurologist and talked about this with him, and he said, Well, let's let's do a tilt table test. And, you know, you still don't have an answer for your fatigue. So we could do, you know, if you do have dysautonomia, you know, oftentimes there is, you know, problems with nerve conduction. So let's do an EMG and see what we find out. And um tilt table test uh was the final interpretation was that it was negative for orthostasis, but when they stood me up, my heart rate jumped up to 120. My blood pressure didn't drop though, so I was told that that the heart rate increase must have been due to a quote unquote panic reaction. And so the tilt table test was interpreted as negative. I've since read that the tilt table test can be negative in up to 50% of MECFS sufferers who have symptoms of orthostatic intolerance, and that a better test would be to do the tilt table test along with doing a monitoring of cerebral blood flow, which is usually done transcranially with I think like Doppler sensors, and and that that is a much more sensitive test. So I never had that done.

Michael Kentris: 14:36

In my in my fellowship, we would do um, because I'm a neurophysiologist by background, we would sometimes do, we call it an enhanced tilt table, where we'd put an EEG on. Uh, because not a lot of places, this is at Vanderbilt, so not a lot of places have continuous transclinal dopplers, but sometimes they'll put the EEG on during the tilt to see if there's any slowing of the brain activity kind of as an indirect marker, if you will.

SPEAKER_00: 14:58

Yeah.

Michael Kentris: 14:58

Yeah. So yes, it's not done super often. Uh and outside of like quaternary referral centers, almost never.

SPEAKER_02: 15:05

Right. There's a lot of literature coming out now, though, that I think is going to change it. I think in the future, we're going to probably have something, some sort of brain monitoring during a tilt table test be standard.

Michael Kentris: 15:19

I think it would be useful to be honest.

SPEAKER_02: 15:21

Yeah, absolutely. Because that is what drives all of the symptoms from it, right?

Michael Kentris: 15:26

That that generally speaking, yes.

SPEAKER_02: 15:28

Well, yeah, you know, the when you get lightheaded from standing up, it's from a lack of blood flow going to the brain. So we should be monitoring that.

Michael Kentris: 15:40

Makes sense to me.

SPEAKER_02: 15:42

And my EMG was also abnormal. I had some uh slowing of the nerve conduction in my my leg. We did an arm and a leg. And he said that that was consistent with something like small fiber neuropathy, but that he didn't consider it to be really uh earth shattering. He just sort of blew it off kind of thing, didn't say anything about it. And I don't have sensory problems in my legs. What I have is I have a lot of temperature dysregulation where, you know, my toes are pretty much cold all the time. And sometimes they get to the point where they actually go numb. And I'll be sitting on the couch with like, you know, wearing three or four layers and having a thick blanket over me. And my sister is sitting next to me with, you know, bare feet and shorts. And I'm just like, what? Why aren't you freezing to death? And she's like, it's 72 in here. So I always have cold fingers and toes, and uh, but they've never turned white. It's never been like a Reynolds phenomenon kind of thing. They're just cold, and I can be hot. I'll be hot and I I can get drenched in sweat at just the lightest amount of exertion and sometimes not even physical exertion, it'll be mental exertion, and I'll just break out in just profuse diaphoresis, and it's it's to the point where you know, people who are having a conversation with me will be like, What is wrong with you? You know, because most of the time with my illness, it's invisible. People don't see it, it doesn't show outwardly, you know. And so they they think that I'm fine, even though, you know, I've told my friends for years that there's something wrong with me, that I'm sick, that I can't do the things I used to do. And but it doesn't hit them until they're sitting in front of me just having a normal conversation on the couch, and I'm, you know, sweating like I'm running a marathon.

SPEAKER_00: 17:40

Right, right.

SPEAKER_02: 17:41

You know, so I'll be hot and my fingers and toes will be freezing cold. And yeah. So temperature dysregulation goes along with dysautonomia. Right. And then with the abnormal nerve conduction, I thought, you know, that must be what that is picking up. I've never had a biopsy though to look at the nerves because I, you know, I don't necessarily feel that it's relevant to my journey right now. If I do start developing, like, you know, disordered sensation in my legs, then probably I will. Uh in the meantime, I'm already on pregabalin, which was started because of the periodic limb movement disorder. First it was gabapentin, but that was so short-acting, it didn't let me sleep through the night. So, and extended release gabapentin is not covered by insurance. So we switched to the pregabalin, and that has been working out fine. I don't have restless leg symptoms anymore, which is the only thing that I notice physically about anything as far as the periodic limbs, because that all happens when I'm asleep, you know. So, but doing the the pregabalin and you know, noting that my sleep was better was not making me feel better. And I was continuing to get worse. I had developed the symptoms of orthostasis, and I was having feelings of being physically sick during exercise, and then after exercise, I would feel bad. You know, I'm sure everybody can who's exercised can comment on this. You you feel better after you exercise, you know, and some of that is due to the internal endorphin release, right? Um, that's right. That's why we have exercise addicts out there, you know, the fitness gurus that, you know, exercise like for two or four hours a day, which is crazy to me. But um, but it gives them an internal high, you know, and they they go for that. But I felt worse after exercise. And and then it started not just being a couple hours where I would have to take a nap after exercising, it would get to the point where it would knock me down for days, and I would just feel Feel I felt like I was run over by a truck. I felt my muscles were sore and my back was achy and my joints felt stiff and my uh glands felt swollen and my throat was sore. And a couple of times I was like, am I coming down with something? How is that possible? We mask religiously when we're outside. We're doing social distancing. You know, that that tapered off as the pandemic slowed down. But, you know, I didn't feel like I was having risk factors for getting viral infections. So then I started thinking, is this what they mean when they talk about post-exertional malaise? And PEM, as we call it, is the hallmark of MECFS. That is the thing that drives the illness. It is the thing that makes us worse. It is the thing that prevents us from exercising because exercise makes things worse. And the theory is that, you know, there's a limited amount of energy that we have. We don't have the ability to do, well, we we can do things, but we pay for them later. And so the mainstay of treatment is pacing, as we call it. You have to pace yourself and you have to be monitoring your your energy expenditure as you're doing every task throughout the day. And that doesn't just apply to physical exertion, it applies to mental exertion as well. I fortunately have not had a lot of that. There are people that have to sit in a dark room with noise-canceling headphones and no sensory input, and you know, can't be reading or on their phone or anything like that. They just have to be in the dark resting. Otherwise, they can't get up and go to the bathroom because they don't have enough energy to do it. So we talk a lot about spoon theory, you know, in the patient support groups that I'm in. Um, the idea being that you have a limited number of spoons per day. And if you go through those spoons, then you're gonna be into that overexertion range and you're gonna pay for it later. And it might not be just for a few days or a few weeks or a few months. It might be semi-permanent worsening of your disease. And that's daunting to think of because one of the things that we're taught in residency primarily, especially doing emergency training, is to power through. That's what you do. You can sleep when you're dead, you know? And so you're you're chronically sleep deprived, but it's okay because you're doing the right thing and you're taking care of patients, and that's what you have to do. And sometimes things are tough. And, you know, I I was treated badly when I did my training, so that's what that's what happens when you're a resident, you know. Shit rolls downhill.

SPEAKER_00: 23:05

Mm-hmm.

SPEAKER_02: 23:08

But that kind of attitude is exactly the wrong thing that you need when you have this illness.

Michael Kentris: 23:15

So obviously there's a a lot to unpack there. I would say, you know, emergency medicine after after the surgical specialties is probably one of the more physically demanding specialties in medicine. And that's gonna be very difficult. So how has this disease affected your your practice and career?

SPEAKER_02: 23:34

So when I started getting the fatigue and the brain fog, as I know it was, that's the term for it. I started cutting back on the number of shifts I was doing per month. When I was doing full time, I was doing uh 10 to 12, 12-hour shifts per month. And they were all night shifts, again in a small rural critical access hospital. And it, you know, you'd be up from 6 p.m. until probably 3 a.m., just on your feet the whole time, going back and forth, seeing patients. You know, we were very crowded. Um, and again, we were understaffed and under-resourced. So typically there would be 10 to 15 patients in the waiting room at any given point, and another 10 to 15 patients on your trekking board at the same time. And and at night, you're the only doctor in the hospital, so you're also taking care of all the patients upstairs, which you know mostly was the med surge nurses would do. But if something happened or, you know, you they needed a doctor at the bedside, that was you. You would drop everything in the emergency reproom and go upstairs. So somebody was coding upstairs, you had to go upstairs and run the code. So I started backing off on those shifts, and I went from 10 to 12 to nine, and then I started doing seven per month, and then um things were getting quite toxic at at that workplace because again, we were under-resourced, and you know, admin didn't see eye to eye with us when we asked for more. And um, and I was also always behind on my charts because I was struggling, you know. So I thought maybe the problem is I need to stop working nights. And this was a a an idea that had come from my PCP and other doctors that I was seeing who was they were basically saying, you gotta stop working nights. It's bad for your health. So so I started doing locums and I switched to days, and I was only doing six shifts a month, so six 12-hour shifts a month. And then I switched to a um when that contract was up, I I started working a contract in Maine, which was great. It was just a beautifully run ED in Bangor, and I loved it, and I loved the people there, and it didn't feel stressful, but it was too much. And I was, you know, I was missing things. I I missed a STEMI, which really hit me hard, and I was forgetting things. And when you're on the phone talking to a consultant, you have to be brief and you have to speak fast because their time is valuable, and you have to get to the point. And it and I was finding that hard to do. So that was last September. I haven't worked since then. And since I stopped working, my disease has stopped progressing, and I've actually gotten a little bit better with aggressive pacing starting this year, and I stopped all exercise. I got to the point where I couldn't even do the water exercise with the little old ladies because my heart would, heart rate would go out of control, and then I'd and I'd pay for it for days. And even yoga was was too much, and it wasn't helping. And at that point, I was still getting worse. So I thought we're gonna stop doing the yoga. And yeah, I tried all the things. I did the meditation, I did eight months of a guided imagery and mindfulness program. Um, and again, I was continuing to get worse. So that magic cure didn't work. Um, but the only thing that has worked is pacing and not powering through and paying attention to my limits and following them. And my sister who lives with me has has been the only one who has really seen, you know, the effects of it. And and she believes me like wholeheartedly. And I the heart rate monitor that I wear is tied to a program on my phone, and it will send an alarm, it'll, you know, make noise if I'm in the over exertion range of my heart rate, and and she'll hear the alarm and I'll be powering through, and she'll say, You need to go sit down. And I'm like, I just want to finish doing the dishes.

SPEAKER_00: 27:54

Yeah.

SPEAKER_02: 27:55

And and you can't because that's that's the thing. I also got a new PCP because it got to the point where my old PCP, the one who had you know been with me this whole time this at the beginning of this thing, she she finally just she got frustrated with me. She I think she just didn't know what what to do with me or what was wrong with me. And and I wasn't ever supposed to be a difficult patient, right? I was supposed to be an easy one for her. And you know, I never thought that I would be a a complicated patient or a diagnostic conundrum. You know, I didn't want this disease. It wasn't something I sought. I'm not pain-seeking, I don't have pain. So I might have fibromyalgia, according to one doctor, but I don't go out there asking people for pain medication. So it can't be psychosomatic in that sense, you know. And so with the, you know, diagnostic conundrum that I was, my PCP became convinced that all of my symptoms were due to depression. She said, you know, depression just explains all of your symptoms. And I don't understand why this psychiatrist that I sent you to that took eight months to get into, you know, wrote this letter saying that they think that your depression is secondary to your medical illness. The psychiatrist that she wanted me to see said, This is this is the medical illness. Treat the medical illness and the depression will go away. I mean, depressed if you if you couldn't leave the house and you can't do all the things that you like doing, you know, I love kayaking. I can't, I can't do that. I love hiking, I can't do that. You know, my artwork haven't done in months. It's hard to do, you know, when you pay for it afterwards. So I mean, this disease has been life altering and devastating. And the physicians that I've seen have used words like, Oh, it must be disappointing that you can't work in the ER anymore. And I'm like, it's not disappointing. That is my life's calling. It is what I do. My entire identity revolves around what I do. So, you know, I'm trying to find other avenues of work. Probably going to end up doing some sort of telehealth. And, you know, back in the day when I was a new attending, the thought of doing telehealth just made me want to vomit. You know, I am an ER physician. That is what I train to do. I don't do sniffly noses, urgent care, and over video, how can you do that? You can't examine a patient over video. This was, of course, before the pandemic, you know, and now telehealth is a part of everybody's daily life. Um, and not just doctors, right? But my PCP said, you know, maybe you've got all these specialists that you see. Maybe you should find a new PCP. And that was very hurtful.

SPEAKER_00: 31:11

Yeah.

SPEAKER_02: 31:12

It felt like a betrayal that she didn't believe me. I finally realized. So I did find a new PCP. And um she's a lot younger and recently graduated, and she was exposed to people who have uh CFS and uh POTS and uh MCAS during her training. And she said, Well, so nobody has uh done anything medical for your orthostasis? And I said, No.

SPEAKER_00: 31:44

I was gonna ask.

SPEAKER_02: 31:46

You know, I had kind of I knew that, you know, you needed to be drinking a lot of fluids, and I was having all kinds of salt cravings, so you know, I let myself have salt, even though I have had hypertension since residency. So she, you know, we did the whole four grams of salt per day and three liters of fluids per day and compression clothing from my feet to my ribs, and we did the all of that. And you know what I learned is that it it is really hard to drink three liters of fluids a day. It's a lot, it's a lot. And if you if you forget to drink the fluids while you're taking that much salt, you get dehydrated, obviously, because your body is eliminating all that salt. My kidneys work just fine, and I was peeing all the time. It just it was it was unsustainable, you know. So we started flugia cortisone, and that has been amazing. My orthostasis is basically gone. My heart rate monitor, it shows that my my heart rates are way down with everything I do, even sleeping, and I don't get dizzy when I stand up anymore. I'm still having a lot of like physical tiredness and weakness in my muscles. And if I don't get enough sleep, uh, I just feel again that feeling of being hit by a truck. I achy all over, you know, just can't get comfortable, feeling flu-like, and those are all typical symptoms of PEM. So I've become convinced that, you know, I was right at the beginning that that my sleep is intimately tied up in what's going on. And doing research, I've found out that MECFS is really also defined by fragmented sleep. And we don't know why. It's not something that people are researching, you know. And even my sleep neurologist who works at the university, and this is what she does, you know, she's paid more attention to the mild OSA that I have than the fragmented sleep. And, you know, she doesn't want to look at the data that I have from my uh aura ring that I wear. But it has been instrumental in for me understanding my sleep. And it might not be completely reliable as a polysomnogram, but it does, you know, do pretty good estimating your sleep level just based on your heart rate, I think. And I know because I wore it during both of my sleep studies, and you know what? It correlated really quite well to the sleep statement.

Michael Kentris: 34:26

That's very interesting. Yeah.

SPEAKER_02: 34:27

So, you know, I don't know if any of these wearables has been studied and in comparison to polysomnograms, which is obviously the standard of care. But any of you who have ever had one can say that it's impossible to sleep normally when you're in a lab.

Michael Kentris: 34:44

So I I had a sleep study done a couple years ago because my snoring was keeping my wife up. I have mild positional OSA, so as long as I'm not on my back, I don't have it. Uh that's the tricky part. But uh yeah, I took a picture of myself like all wired up with uh first around sound there. And it is, I think I got at most six hours of sleep that whole night. It was so uncomfortable.

SPEAKER_02: 35:07

And it's crappy sleep.

unknown: 35:09

Yes.

SPEAKER_02: 35:09

You know, you wake up very frequently and you want to roll over, but you're attached to all these things, and it's uh an ordeal, it takes like five minutes to roll over and become right.

Michael Kentris: 35:17

You have to like call the tech in to like, can you shift this wire so I can roll into my left side?

SPEAKER_02: 35:22

And and you know, and then you you get comfortable, but now you're wide awake, and how are you supposed to go back to sleep? And yeah, um I just I had terribly fragmented sleep. Um I finally just requested the medical records for my sleep studies, and I I was like, I want the whole thing, you know, give me all of it, not just the the one-page summary letter, you know. Um, and then when I finally got it and I looked at at them and I compared it to my aura ring, it was just like so clear, you know. And I don't really have obstructive sleep apnea. I have hypopnea, and and I only have you know 20 in incidents per hour. So I have an AHI of about 20, and and I never had any apnea. So, you know, I think it's simplistic to be all hung up on me using CPAP. And I I have been a good patient and I have been using my CPAP, and it and it has not made me feel better. And my sleep is not better whether I wear my CPAP or not, based on my aura ring. But you know, what has made a difference is Trazodone. It took four and a half years before somebody suggested Trazodone. And you know, that's like one of the first things that non neurologists reach for when it comes to quote unquote insomnia. And my PCP was was totally like floored. She's like, you mean nobody's ever tried you on Trazodone? And I did try it, and it was immediate night and day effect on my sleep reports with my ring and on how I was feeling. And I I think it's the one thing that has made me feel better because my fragmented sleep is better, and I went from having like 3% deep sleep with every night to 15 to 20%.

SPEAKER_00: 37:18

That's pretty good.

SPEAKER_02: 37:19

And I went from having to be in bed for about 13 hours a night in order to get any kind of amount of feeling like I could actually get out of bed and face the day, even though I don't have refreshing sleep ever, but um 13 hours in bed in order to get, you know, probably 11 to 12 hours of sleep according to the ring, and that was all fragmented with basically no deep sleep to speak of. And then, and now since doing the Trazodone, I can be in bed for eight or nine hours and get seven or eight hours of sleep according to the ring and 20% deep sleep, and I'm feeling better. So I found out that uh Trazodone is a 5HT2A antagonist, and that is where the its efficacy as a sleep agent supposedly comes from. So I started, you know, looking into well, what other things do 5HT2A? Because I feel like I have room to get better. Like I can dial my sleep in better, and maybe that that will help me improve because I've only seen you know minor improvements since the beginning of the year, which is when I started the Trazodone. And one of the things that came up on that search was Aripiprazole, which I found very interesting because one of the treatments that is promoted by Stanford for MECFS is what they call low dose aripiprazole. And they'll do like one milligram or even half a milligram a day.

SPEAKER_00: 39:03

Really?

SPEAKER_02: 39:04

And somehow it helps with fatigue for people who have CFS in a um a minority of patients, but with MECFS, if you're talking about 30% improvement, people will take that.

SPEAKER_00: 39:18

Right, right.

SPEAKER_02: 39:19

If it means not being housebound, you know. So that's next on my list of things to try. I've also tried low-dose naltrexone, which is something that I encountered early on in my research, is used for fibromyalgia and other chronic pain syndromes. And as a toxicologist, naltrexone makes sense to me because of its effects on the mu opioid receptors. But it hasn't worked for me. It hasn't done anything, and I don't really have a lot of pain. So maybe that makes sense.

Michael Kentris: 39:49

I've used it for folks with fibromyalgia or other kind of neuropathic pain syndromes. And like you said, kind of mixed results depending on the person. But as you said, if it if it works for some people, it's worth trying. And it is so low risk. But yeah, it is one of those things that until I had a patient come to me and ask me about it. And I was like, well let me look into it. And uh I was like, well, it seems plausible. It's one of those things where I think just re-emphasizes, right, our education is is not complete when we finish residency. And we've got to keep uh I mean, man, things, things just change so much. Like the Abilify thing. That's not something that I've heard before. I'm certainly going to have to read up more about that as well. It goes back to that pharmacological, plausible physiologic mechanisms of things. It's like, what's the harm in trying? I mean, sometimes there can be harm in trying. Like I I remember a guy who wanted to take um oh gosh, what was it? Uh I think it was gym citabine maybe for for chronic fatigue syndrome and a lot because he had like positive CMV IAGG. And I'm just like, I don't know about that. Like you're a young guy. It's caught can cause infertility.

SPEAKER_02: 41:04

Right. That's that that seems crazy to me. You know Yeah. So early on when I started considering the diagnosis of ME, it got into a lot of support groups that are for patients and stuff like that. And that was instrumental in cementing my diagnosis in my mind because I had the things that they had, you know, that they discussed in group, but they come up with a lot of a lot of out there things sometimes. But most of the time it's pretty benign you know like a supplement is is uh you know probably not going to be a problem. And and I have jumped on the the supplement bandwagon if if it's something that's been studied with MECFS and there's a a study out there that showed benefit, I'm going to try it, you know, and and I think that that as a toxicologist I'm more inclined to off label use because a lot of what we do in toxicology is off label and uh you know and I'm comfortable with knack and carnitine and things like that because we use it all the time in toxicology. So I am taking both. And you know I don't know necessarily what works but I'm I'm gonna take them until I start feeling better and then you know eliminate one by one and see if I can tease out which one if any is helping. But one of the things that you know we discuss in group with the patients that have gotten better is really it's not about any one thing because we don't know what causes this disease. And so if you have a medication or a supplement that that gives 30% improvement in functioning, you know, you take that and then you do another one that has another you know 10% improvement. You know, it's all little tweaks here and there and all and it adds up over time. And you combine that with aggressive pacing and people can eventually improve to the point where they can leave the house and have a semi-normal life. They can't do all of the things that they used to do and physical activity is not one of the things usually like you know they're not going to be out there running a marathon or something like that. But a lot of them exercise you know and and some of them describe being in that dark state where they were you know closed off to sensory input and sometimes were so bad that they couldn't even eat you know that the the physical exertion from eating sometimes makes people worse with MECFS. So the when you hear about deaths from this disease it's almost always from people who have basically starved to death because what happens is is they find out that if they do the physical exertion that is needed to eat it makes them worse they feel worse and they want to avoid that feeling so they don't eat and they uh they get you know they get dehydrated and their family is like oh my God this is terrible and they bring them to the hospitals and the doctors say oh they can eat look she could swallow she passed her swallow study so there's no reason why she can't eat I'm not gonna give her TPN or tube feeds because she can eat just fine. This is all psychosomatic and so there have been deaths not in this country but several very well publicized one in the UK two years ago and one in Australia last year of people who literally died while in medical care at the hospital of starvation in the 21st century. That just blows my mind you know do we let people with anorexia starve to death or do we force them into getting food so you think that this is a psychosomatic illness but you'd rather let the patient starve to death than admit that your treatment approach is not helping. And that's the thing is we took an oath we took an it's part of the Hippocratic oath to to do lifelong learning. Well it might not be part of the Hippocratic oath but it is part of the oath that we take I think it might actually have been part of the the old timey Hippocratic oath the original one to learn I think to learn from my colleagues is part of the the thing the old Greek one. Anyway so it just it just blows my mind to encounter physicians because I'm in also physician groups of you know well physicians talking about physician things and every once in a while somebody will ask you know what what's up with this uh you know chronic Lyme thing is that really a thing you know and it's completely divided you know between the people who have had experience by and large with this disease usually a family member or themselves and the people who are the non-believers who you know I look and say you know what what's a good example of a disease that like POTS mast cell activation syndrome but not even this autonomia not even the ones that are in this spectrum of diseases like diseases that that we didn't think were a thing. And the pandemic has actually been extremely helpful for MECFS as a disease because now all of a sudden there's 17 million people in this country who have long COVID and long COVID I think is is basically the same disease or on the same spectrum of disease you know it falls under that umbrella of MECFS and fibromyalgia and POTS and EDS and MCAS they're all related. We don't know I think so how they're related but they you know population wise they tend to occur together. And I found out just six months ago that I'm hypermobile I never thought of myself as being hypermobile but my knees go a little bit backwards and my elbows go a little bit backwards and you know I just thought that was normal. Everybody's like that, right? Everybody can take their thumb and uh touch their forearm right sure so I never thought of myself as being you know having hypermobility but I couldn't deny the the exam findings I was sitting right there and she did the exam and had positive findings and I was like okay and now that I know that you know you look back on things and you're like that makes that makes so much sense because I have XYZ you know and my mom she has a thing with her skin is really thin and very stretchy and she has a lot of issues now that she's older and also she had a lot of illness growing up she was sick all the time she used to call them her viruses but she gets them every two to three days without being exposed to anybody just being at home. So that's interesting. And you start thinking about you know where this disease came from. And I think that that it's it's time to be done with the pathogen model of disease that we teach in med schools. And that was a big part of of Western medicine that the theory that pathogens cause disease and if you can eliminate the pathogen you eliminate the disease and that was revolutionary and changed the face of medicine and the health of the planet back in the 19th century. But now we have eliminated pathogens because we have I mean we haven't eliminated them but but we have antibiotics and we have antivirals and a lot of those are imminently treatable. But now we need to think about disease as I like to think of it as no you've got a genetic you start with a genetic predisposition like cancer. You've got one hit to a gene it's not enough to cause disease and then something happens it's an insult right it damages that gene or it damages another gene. So now you've got the Swiss cheese effect right and it triggers a disease so you've got genetics plus an insult which is environmental or mental like a stress like PTSD or something happens some sort of big trauma to the system and then you have a disease so I firmly believe that I have a strong genetic predisposition and then I had the stress of first residency and then fellowship and then working as an ER physician in an underresourced you know facility and being taken advantage of by uh admin and the moral injury of being asked to treat patients based on insurance and what they're willing to reimburse. And then um the pandemic and did I get sick maybe I got sick with COVID early on and didn't didn't notice it because I I was vaccinated at that point or maybe the vaccine triggered it you know which is a whole different conversation there. But yes but there is evidence there is evidence that that the COVID vaccine can trigger illness and we know this is true of other vaccines. Oh yeah and I've got an anti vaccine yeah you know I I I mean I've personally seen folks who got I think it was the AstraZeneca one but they had a cerebral venous thrombosis or people who get the flu shot and get Guillaume Beret you know so the the flu vaccine can cause GPS just as much as the well less to a lesser extent but you know the the disease can cause GPS so does that translate to any illnesses from COVID and there was that study that came out recently and and then recognition from the CDC that and that was before all of this RFK junior madness that recognition that there is a post-COVID vaccine syndrome that can happen. And we only find this out because of the massive numbers that go through this vaccine because of the pandemic.

SPEAKER_00: 51:22

Right.

SPEAKER_02: 51:23

You know? And I think that all the diseases that we used to laugh at that I used to laugh at that were not a thing, chronic Lyme is a made up disease by grifters who take advantage of patients and put them on antibiotics for years and do untold harm and it's not a thing. But you know what? It is a thing.

Michael Kentris: 51:43

And so evidence has shown that yeah I'm kind of of two minds on the chronic Lyme not to get too down the rabbit trail. I think I think there's a post Lyme but I don't think they have a chronic infection with Lyme. And I think that's the problem is the the ones who do all the antibiotics, I do think that they probably are grifters.

SPEAKER_02: 52:03

But I'm not saying that they don't have a constellation of other symptoms that would necessitate and the patients that truly have the disease will come to a realization at some point that these antibiotics are not helping me.

unknown: 52:15

Right.

SPEAKER_02: 52:16

But they went to those grifters because we, the medical community failed them we didn't help them. We didn't believe them. We couldn't admit that we didn't know what was wrong with them. And that's a big thing that I want physicians to take away from this is we need to admit when we don't know what's wrong with a patient. We need to re-evaluate a diagnosis of exclusion and say, well everything else has been eliminated so it must be a psychosomatic or a functional illness. But the truth is is that and we all know this is true that medicine is not perfect. There are diseases that we don't know about there are diseases that will come into existence that are not in existence now because of something that happens in the future you know or we'll find out that you know I don't know all the BPA that's floating around in everybody's bloodstreams, you know, causes something that will will become clear with you know population analysis in the future.

Michael Kentris: 53:23

I don't know I mean they're already finding microplastics and carotid you know atherosclerotic disease so that's that's in the future for all of us.

SPEAKER_02: 53:32

When I did my tox fellowship back in the early 20s I did a a lab rotation in the toxicology lab and we did a GCMS on urine samples from patients and we'd be looking at these tiny tiny little peaks way down looking at you know trying to identify that particular substance but next to them there'd be this huge peak. And I was like what is that? Because every patient had it and you know what the lab director said and he's you know an amazing so smart way smarter than me PhD toxicologist you know and he said that's just phthalates oh is that awful I'm like what it what is phthalates phthalates spelled with a P P T H A L A Thalates is it is a microplastic and it's in everybody's system. Everybody has it and it is not from the lab equipment it's in our urine it's in our blood we all have it. So the people who are like I need a BPA free bottle you know what that ship has sailed and we're transmitting it from generation to generation mothers give it to babies and babies are born with it. And what does it mean?

Michael Kentris: 54:50

Well we haven't figured that out yet so I wanted to kind of touch on something you'd referenced a couple times and uh this this tendency of calling something psychosomatic and in the in the neurology field you know we we would have like this the functional neurologic disorder kind of camp right and these previously would be called like psychogenic whatever when I was when I did my training. Yeah that was before the functional well I mean during my training as well but right there's there's been this shift like well it's like a well actually right I'm kind of of the mind that psychosomatic as as a term as a concept probably doesn't really exist which I know is like kind of inverse to say that about a psychosomatic not existing but but I think it is it kind of comes out and I've talked about this with with friends on the podcast before is that um this kind of Cartesian dualism right like that the mind is separate from the body is a bunch of baloney it's not right right we are embodied beings right there there is no mind without the body and there is no body without the mind or at least there is no perception of body. So trying to separate them in this artificial way again right at kind of this like post-Enlightenment you know thinking let's say I think it's just left a really problematic area where it's like yeah it's like well this patient's depressed I'm like yeah because they're sick. And you know it can be a chicken in the egg thing where it's like well they're depressed and they became sick sure that can happen too but it doesn't change the fact that you have two separate problems. Perhaps they're linked perhaps they're not but you should be approaching both of them in an equal fashion and I think that's the problem you know this is going to sound uh perhaps a little self-serving right I'm uh I'm a DO by training so we kind of always have like your holistic care. I'm doing air quotes uh for the listeners but uh but it is true right it's a lot of times I would get patients in my clinic who they have symptoms that I don't know what this is and you know as a neurologist I am kind of by default a nerd so I spend some of my time reading philosophy and one of my favorites which a lot of people probably have read is Plato's Apology where Socrates says like you know to paraphrase the only thing I know is that I know nothing and by virtue of that he declares himself the wisest man in the city. But I think that's true. It's I know just anecdotally over the course right I've been in in neurology for 11 years now and postgraduate for seven that there are entities that exist now that have antibodies named now that did not exist when I started training. And I can't expect that to change. If anything it would only accelerate so if someone has a problem I think it's it's reasonable to take it at face value. And I I have several patients now who I you know I'm still working them up. I don't know what's wrong. They have pain or fatigue or things like this and we're kind of working our way through these right where I I feel bad because you like you said, right, if we're going to settle on a diagnosis of exclusion you want to make sure that you're not missing something because that to me is one of the worst things is when you do miss a diagnosis for something that has a definite treatment and you know you kind of are just finding your way a little bit for these things that don't have good treatment guidelines or paradigms and you're kind of doing little scraps of research here and there and hopefully coming to something. But when you're not a specialist in that disorder sometimes you kind of feel like you're out of your depth at times.

SPEAKER_02: 58:43

Yeah. And and I think that um that quality of admitting that you don't know what's wrong is the first step in being able to diagnose these patients. And even if you can't diagnose them the grace that you give them the validation that you give them by believing them I have had patients that you know in the in the ER that you know I've sat down with like literally people love it so much when you sit in the ER. I sit next to the patient's beds and I talk to them and I ask them questions and I listen and I make it clear that I'm listening you know because I get I repeat back to them what they've said you know and and patients will say things to me like and I get this all the time you know nobody's ever said that to me before nobody's ever explained it to me before or you're the first person that has ever you know been able to connect these dots and and it just makes me feel so bad for them even before I knew that I was sick. You know, but being sick has has changed my perspective a lot. Again, going from uh the totally devastating and complete rejection with my entire being of the idea of having fibromyalgia to now being able to discuss it as part of my diagnoses, even though I'm, you know, not 100% convinced that that that is really a diagnosis that I should have. But but I know that it falls under the umbrella of the diseases that I do have. So yeah, it changes my perspective. And I I think that that the first reaction should be to believe patients. But the thing that I got overwhelmingly from my residency, I was taught, this is how I was taught, was to not believe patients. We don't believe them. We assume that they're drug seeking, we assume that they're malingering, we assume that there's secondary gain. Why do we do that? Why are we so suspicious?

Michael Kentris: 1:01:01

I mean, it's it's easier than believing because if you believe, then you have a moral duty to try and do something about it. And that's a lot harder. Right.

SPEAKER_02: 1:01:10

But and again, you don't have to come up with a diagnosis for patients. But when you believe them, when you validate them, you know, I've treated a delusional parasitosis in the ER. They come into the ER with their little matchboxes, the positive matchbox sign, right? And they they come in and they've seen so many physicians and they get blown off. And they come in being expecting to be blown off yet again. But the best thing you can do for them, and this is this is what's taught now about delusional parasitosis and how to get these people effective treatment is to first validate their concerns. You don't frame it in terms of I I uh I believe that you have a parasite under your skin. No, I believe that you feel that there's a parasite under your skin. I I believe that you are feeling that there is some sort of alien thing there, and that that must be so distressing. Imagine how distressing that would be. If you think about like that's my like ultimate terror as a as an ER doctor, is to have some of the diseases that I see patients having. When I have my worst nightmares, that's it's usually body horror, you know, like seeing it one of my arms or legs have like some kind of weird flesh-eating thing where there's like holes in it and you can see down to the tissue, like, you know, that's the kind of thing where you're you look at that with patients and you're like, oh my God. So that's the thing is you've got to put your put your brain into their shoes and think about what must it feel like to have this thing that is going on and not know what it is and not have an answer. And on top of that, to have doctors tell you you just need to believe that you're well.

Michael Kentris: 1:03:02

I mean, that's what a CBT is, basically, right?

SPEAKER_02: 1:03:04

I think CBT has its place. I think that's I know.

Michael Kentris: 1:03:08

I'm just being facetious.

SPEAKER_02: 1:03:09

But you know, CBT as a term is triggering to the entire MECFS community. CBT and GET, which is graded exercise therapy, they have been uh disproven to be helpful and often can be harmful in MECFS patients when they're used as the primary treatment modality. We know that exercise, when it's not done within your power or energy envelope, makes people who have MECFS worse. So graded exercise therapy in theory sounds great, but in practice, it's not. It will make patients worse if they have long COVID, if they have long Lyme, or you know, chronic mono or any of the things that you want to talk about, you know, things that that you might not think of as real diseases, but you tell patients that exercise will make you better, it's not completely true.

Michael Kentris: 1:04:08

I know there was that, I think it was a UK study where they showed slight benefits, and I know it was, let's just say, uh, greeted with some uh controversy as well as the validity of the results.

SPEAKER_02: 1:04:21

Aaron Powell You know, the UK is light years ahead of the U.S. right now when it comes to acknowledgement of the disease and treatment of the disease. There's a there's a treatment guideline in their NIH guidelines for MECFS. There is no such treatment guideline from the CDC. The CDC, the well, the Institute of Medicine put out a set of diagnostic criteria for MECFS in 2015. So I should have been able to be diagnosed years ahead of what I had. And I was the one that diagnosed me. No other doctor diagnosed me because either they didn't know what was wrong with me and had no idea what CFS was when I suggested it, or they say, Well, you know, I don't know about that disease. I don't really feel comfortable. I don't feel comfortable diagnosing you, even though there's a published set of diagnostic criteria from the Institute of Medicine sitting on the CDC website.

Michael Kentris: 1:05:18

That's a phrase that kind of drives me crazy in medicine is the not feeling comfortable, quote unquote, doing something. So I mean, there's right, there's a lot of things that sometimes like I'm not comfortable doing this, but it's probably the right thing to do.

SPEAKER_00: 1:05:30

Yeah.

Michael Kentris: 1:05:31

So it's one of those things where we we just love to shoulder responsibility to somebody else.

SPEAKER_02: 1:05:37

Aaron Powell Well, I think that we practice defensive medicine too much.

Michael Kentris: 1:05:41

It's probably true.

SPEAKER_02: 1:05:42

And I well, I see it in the ER a lot. The ER physicians are kind of divided into two different camps. You've got you've got the cowboys and you've got the defensive medicine practitioners who will order every test and get a CT on every patient and do way too many LPs, and you're like, why? Why? Yeah. Because because they might come back and sue me.

Michael Kentris: 1:06:08

Yeah. It it only takes one time to, you know, kind of change your opinion, I suppose.

SPEAKER_02: 1:06:12

Yeah. But you know, I've never been sued, and I've never had a patient, I've had patients who've been upset with me.

SPEAKER_00: 1:06:20

Oh sure.

SPEAKER_02: 1:06:20

You know, it happens. But I think that when you practice the what I was talking about, the validation and the acceptance, and you know, I believe that you have symptoms. I don't know what's causing them. And being able to admit that to a patient, that kind of humility, I think improves the doctor-patient relationship to the point where no malpractice claims are much less likely to happen.

Michael Kentris: 1:06:47

That's true. I mean, one of the things I noticed, you know, because I I still do a lot of resident and medical student teaching, is just talking to people like they're people can get you a long way.

SPEAKER_02: 1:06:58

Yeah. And this is my my way of practicing medicine. I've developed myself over years, but it was not the way I was trained. When I was trained in Detroit, we were old school. This was before Obamacare, and we were the primary care for half the city. And we were working in the inner city, and our population, by and large, was African-American, and we, by and large, were white, and we were very paternalistic. There was no such thing as shared decision making. And informed consent was something that you did because it was required on the forms, not because you were actually trying to inform the patient on anything. Yeah. So we would go in and talk to the patient and examine them and then tell them, you know, we'll come back with some test results. You wouldn't tell them what you were going to order or why, which I always do now. And and you wouldn't ask them what you wanted, what they wanted done. And I'm not saying you you just ask the patient, well, what do you want to do? No, nobody likes that. You're in charge. Yes, we understand that, but they do have some agency, but I was not taught that as a resident.

Michael Kentris: 1:08:10

Yeah, I know there's different practice environments, different relationships that people have with the medical system. Kind of got a mixed bag where I am presently, some more urban, inner city population, but then the rural areas are very nearby as well. Um and so I think back to like like just like, for instance, the sheer number of questions that someone would have for me um about their condition, on average, significantly lower where I am now. So I have to explain and I ask, like, do you have any other questions? And they're like, no. I'm like, oh, okay. And I'm like surprised by it. I still, I've been here for like four years. I'm still surprised uh when someone says no. So I'm like, well, I'm maybe I'm doing a really good job explaining things, but I think it just may be a difference in the, you know, the population.

SPEAKER_02: 1:08:59

Yeah, definitely. That population in Detroit was trained by us as physicians to expect that they were not gonna have any say in what was going on in the emergency department. And so there was a a little bit of learned helplessness, I think, and they did not participate in their care. I didn't learn that until I got to the suburbs. And all of a sudden, if you're trying to treat a white person for an STD without telling them what was going on, oh, that was that was not gonna go over well. I learned that real fast.

Michael Kentris: 1:09:29

So to kind of bring us around to kind of close the loop, if you were gonna say, like to a physician or a medical trainee, what what should they know about MECFS and kind of what would be the best way to deal with someone who you suspect might have that condition?

SPEAKER_02: 1:09:50

Well, one of the fallacies that I hear repeated a lot by the medical community about my disease is that people think, well, how are you supposed to diagnose a nebulous disease that doesn't have, you know, guidelines or diagnoses or diagnostic criteria or a test or something like that? And I say, there are guidelines. There are guidelines. There are diagnostic criteria, as I mentioned, the IOM criteria from 2015 on the CDC website. But also there are several centers, and there's not enough people who treat MECFS compared to the numbers of sufferers, especially after the pandemic, the explosion of long COVID. So a lot of them, you know, they want to help you. They, those specialists have put out guidelines. The Bateman Horn Center, Bateman Horn is one of the big uh treatment centers for MECFS. Yes, they are private. They're in Utah, but they are a center of excellence and they do medical teaching. They have CME videos on their website, all related to this class of diseases, including long COVID. They have treatment guidelines, they have stuff for patients, they have stuff for doctors, they have stuff for physical therapists. There is help out there. If you think that you might have a patient with this disease, there are resources. It did not take me very much searching on the internet to find this stuff, you know, and Stanford, another big center for treating this disease. Mayo Clinic also does CFS. They don't have any, they do have there was the Mayo Clinic proceedings from uh 2021. So they've got a brief paper with uh some treatment recommendations. So, and you can always just pick up the phone and talk to somebody. One of the biggest things that I found to be helpful in the ER when I didn't know what what to do is to be able to pick up the phone and call a specialist and say, hey, this might sound like a stupid question, but and if they're reasonable people, they'll be okay with you asking the question.

Michael Kentris: 1:11:55

Yeah. I mean, I still call like other neurologists and other subspecialties, like, hey, I got this weird thing. Yeah. You ever heard anything like this before? And you know, it's it's always good to bounce ideas off of your colleagues. I, you know, two heads are always better than one in these types of situations.

SPEAKER_02: 1:12:11

Yeah, a hundred percent. And until a single specialty takes ownership of this class of diseases, which I don't know is going to happen until we find a cause. And we're close. There's a lot of research that's being done suggesting a Krebs cycle problem that is related to the innate immune system. So, so they're close. And as soon as we know what is the cause and we start developing targeted treatments, it's gonna fall into a specialty, you know, just like HIV fell into a specialty.

Michael Kentris: 1:12:43

I have a suspicion that it's probably going to be multiple different entities that are currently living under one umbrella, like so many things in medicine. But yeah, I I think that there will be, I mean, eventually, you know, things these things do come to light.

SPEAKER_02: 1:12:57

But there's so many terms for this illness, right? Because it has come up under different specialties, and because you have patients that have gone without diagnoses for so many years that they come up with their own names for it, you know. And I think that that uh the rheumatologists call it fibromyalgia. I think that calling it myalgic myeloenceph or encephalomyelitis is the most ridiculous misnomer. It comes from the 1930s.

Michael Kentris: 1:13:23

I dislike that name intensely.

SPEAKER_02: 1:13:25

It comes from the 1930s. It you know, they had no idea what was going on, and um, and they thought that it was truly a brain inflammation.

Michael Kentris: 1:13:34

But maybe it is it makes me think of like uh maybe like, oh, I got a bad case of dropsy. That's what kind of puts me in mind.

SPEAKER_02: 1:13:40

Right. Absolutely. But but it's better than me saying to patients that or saying to people, especially my friends and family, that I have chronic fatigue syndrome. Because that, you know, everybody's like, well, I'm tired. No, right. You have no idea. Chronically, you don't understand. That's like saying that you stubbing your toe is the same as me breaking my femur. You don't understand.

Michael Kentris: 1:14:03

Right. And I I did read some criticisms of that name also for exactly that reason, where it's like a diminution of symptomatology.

SPEAKER_02: 1:14:11

Some people have suggested other names. There is a systemic exertion, something, something, S E I D. And then also to try and bring all of the different causes under one term, there's also infection-associated chronic condition. So that the IACCs include, you know, chronic Lyme, chronic mono, all of those things. And again, you're right, is just because uh a virus triggered my illness doesn't mean that I still have that active viral infection. And we know this about patients that have long COVID. They don't actively have COVID anymore. It just triggered this illness. But we still call it long COVID. And so I think that long Lyme is a reasonable name.

Michael Kentris: 1:15:01

I tend to, at least when I'm writing my own charts, I tend to refer to things as post-infectious, fill in the blank. Because, as you said, I don't want to give people because you know, with charts being open access to the patients, and then obviously to hopefully educate colleagues who are reading my notes. Kind of my my thought process as well. So thinking like, I think there is a thing here, I think this is what triggered it, trying to be as you know, again, right? That's that neurology coming out in me. Uh that as as precise as possible with with what I'm saying.

SPEAKER_02: 1:15:40

But there was a name for it before COVID came along.

Michael Kentris: 1:15:44

But we didn't have social media back then, did we? But I do agree that these are probably all of a piece with one another to greater or lesser extents. And I I'm very interested where where the research will lead us, uh, hopefully to some better treatments, if not even better diagnostic criteria to identify this. Because even better, maybe if we can recognize these earlier, can that change the course of the disease for people and the long-term outcomes? Because that would be even better than finding a treatment.

SPEAKER_02: 1:16:11

Yeah, if this disease, you know, becomes something preventable, like AIDS, that would be amazing. I don't want this disease. Maeve in the UK, who died, she didn't want to starve to death. That's what, you know, you get these physicians who say, well, she that was her, she did that. And I'm like, but she didn't want to starve to death. Patients don't want to starve to death. Patients don't want to die. They don't want to sit in the dark. They didn't ask for this.

Michael Kentris: 1:16:42

Yeah. No, it's uh it's a it's definitely a tough spot. And yeah, that kind of bouncing back and forth between different specialists, you know, is this quote unquote in your head, which I've already given my opinion about that. But uh it's uh it's it's a very challenging place to be in as a patient. I know I've had some friends and family go through like similar things, and you always try and avoid being in inserting yourself too much if they don't ask you, uh, as far as like you know, being the family member who's the the doctor. It's um just like, well, why is your doctor doing that? That doesn't make any sense. So it does, right? It's it's kind of like the uh, you know, we we like to quote Oslet around here, but it's like uh, you know, listen to your patient, they're telling you the diagnosis type situation. So I don't know. I I do think it it ultimately comes back to the story, and if you do a thorough investigation and you're left with these symptoms, maybe you know what they are, maybe you don't. Can I pathophysiologically come up with some things that might help ameliorate someone's symptoms? A lot of times, yes. Sometimes it's a bit harder, but but I that's something I always say, I have to remind myself of this sometimes too, right? Because we've all had those patients who are more just say taxing on us. Yes. It's just like I know this is gonna be a rough clinic visit because I don't know what's wrong with this person and I don't have any good treatments. I've tried several things, side effects have abounded, you know, and just like you just gotta mentally brace yourself and keep trying to do your best. That's that's kind of my slap together approach.

SPEAKER_02: 1:18:19

For sure. I tell I tell the residents the same thing, too, is your, you know, 95% of your diagnosis is going to be in your HPI. You gotta just ask the patient questions and tease things out. Your physical exam should be to confirm what you're already thinking. And then you do tests to cement the diagnosis. But at the same time, you already should have an idea in mind of what's going on. And so you can't neglect to treat the patient while you're doing all of those things in the ER at the same time.

Michael Kentris: 1:18:54

Well, this has been a very educational conversation for me, and I appreciate your time. Uh Dr. Amy Nefsey, if people want to find more, I don't know if you do any work online or if you have any resources that you would direct people towards. Anything that you want to plug at the end of our conversation today.

SPEAKER_02: 1:19:12

Aaron Powell So my pluggables, as Robert Evans would say, include my Instagram, which is not extremely active, but um I do little talks blurbs. So you can find me um at ToxKittyM D. There's a story behind that name, but that's for another day. T-O-X-K-I-T-T-Y. That's pretty much it for now.

Michael Kentris: 1:19:34

All right. Well, thank you so much. I appreciate your time. And as always, uh, you can find me on uh Twitter slash X at uh DR Kentris, Dr. Kentris. And you can always visit our website, theneurotransmitters.com. And uh please uh go ahead and share this episode with someone you think might benefit from it. And thank you all for listening.

SPEAKER_02: 1:19:54

Thank you very much for having me.

Michael Kentris: 1:19:56

My pleasure.

SPEAKER_02: 1:19:57

Bye.