Beyond Tired: Understanding ME/CFS
episode
The Neurotransmitters: Clinical Neurology Education
1h 19m
2 speakers
4 chapters
transcribed 2 months ago
Transcript
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Transcript generated automatically by AI and may contain errors.
Who is Dr. Aimee Nefcy and how did her medical background shape her ME/CFS experience?
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 Nefcy. 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. Nefcy, is it okay if I call you Amy for our conversation today?
Please.
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.
So I'm an ER physician. I'm actually, well, I'm double boarded. I do toxicology as well, which is a common subspecialty for EM. So I did my training in Detroit. That was in the early 2000s. And I And I did med school there as well. And then I have kind of hopped around with practicing since then. My toxicology training was at the Detroit Poison Control Center and did that for a few years as well. So I have a lot of nerdy trivia knowledge when it comes to medicine and a lot of pharmacology and things like that. So I was working during the pandemic in an area outside of Lansing, Michigan, a small rural critical access hospital that had very few resources. 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 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 remember complaining to my PCP that year about just like a pressure issue. right behind the middle of my forehead that was fogging my thoughts and making it difficult to concentrate. And I was losing words in the middle of a conversation and forgetting what I was going to say and things like that. And then I also developed 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 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. And, you know, my PCP, 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 Sertraline, which I had been on since residency 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 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. Like I stopped, I was on Montelukast, 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 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.
Wow.
With, you know, basically no deep sleep at all. 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 budge my ferritin at all.
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Chapters
4 chapters
1
Who is Dr. Aimee Nefcy and how did her medical background shape her ME/CFS experience?
0:00–10:17
2
What early symptoms and diagnostic tests led Dr. Nefcy to investigate sleep and iron deficiency?
10:17–36:29
3
How did misdiagnoses like fibromyalgia and dismissive advice affect her clinical care journey?
36:29–1:01:56
4
What signs of dysautonomia and orthostatic intolerance did she track with wearables and tilt testing?
1:01:56–1:19:57