Episode 93: Viral epidemics are related to myalgic encephalomyelitis (ME) and POTS with Dr. Byron Hyde

[00:00:00] Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTS. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions, and we are committed to explaining the basics, raising awareness, exploring the research and empowering patients to not only survive but thrive. This is the Standing Up to POTS podcast.

[00:00:30] Jill (Host): Hello, fellow POTS patients and most super people who care about POTS patients. I'm Jill Brook, and today we have an episode of the POTS Practitioners with someone who has incredibly extensive and specialized knowledge and experience with patients who have chronic fatigue and/or myalgic encephalomyelitis. Dr. Byron Hyde has been a physician in Canada for almost 60 years. Yes, that's 6-0, 60. And has dedicated most of his career to studying and helping people with chronic fatigue and working to figure out the causes of it. He has insights and experience you don't hear from anyone else. He has written books about it. He has founded The Nightingale Research Foundation whose mission is to explore, understand, and treat patients disabled with ME, fibromyalgia type illness, and post immunization injuries. He has data from his thousands of patients he has seen over the years, and also perspectives and knowledge that I don't hear any other doctors discussing. Dr. Hyde, thank you so much for making time for us today.

[00:01:43] Dr. Hyde (Guest): My pleasure.

[00:01:44] Jill (Host): Could we just start by asking you to talk a little bit about your unique background? Can you share how you became a physician specializing in ME/CFS?

[00:01:56] Dr. Hyde (Guest): Do you want the short story or the long story?

[00:01:59] Jill (Host): I want the interesting story. [Laughs]

[00:02:02] Dr. Hyde (Guest): I became a physician because I was a brat. I, um, was always doing the wrong thing. And, um, I was swinging on a rope in England and the, the nail came out of the wall and I went head first, opened up my skull.

[00:02:17] Jill (Host): Oh!

[00:02:18] Dr. Hyde (Guest): It, um, messed up everything I was wearing because I had blood everywhere. I was first spanked by my mother for messing up my clothes and then hauled off to this hospital she wasn't allowed in, which was really wonderful. And I got intoxicated by the chloroform and the ether. It's such beautiful perfumes. And I said, Wow, what a lovely place to work

[00:02:45] Jill (Host): [Laughs]

[00:02:46] Dr. Hyde (Guest): And when the, it was during this, uh, first or second World War. And the doctor said, Look, we've got only so much freezing material. If you let me sew up your head without freezing, it's gonna hurt. But if you don't move and don't make a sound, I'm gonna give you a silver sixpence. I said, I'll take the silver six pence. So they sewed up my head. And um, I didn't move, didn't make a noise. I got the silver six pence and I said, I wanna be a doctor. I mean, I can make kids and I can give them silver six pences. And that's how it all started.

[00:03:23] Jill (Host): Oh my gosh. Get out. Wait, so, so this was during World War II, you said? In England?

[00:03:30] Dr. Hyde (Guest): Yeah.

[00:03:31] Jill (Host): Yeah. This just shows kind of the range of experience that you've had. I mean, you are the only person I know of who talks about ME in the context of early polio outbreaks.

[00:03:46] Dr. Hyde (Guest): Actually, I'm maybe the only person you know, but most of the people that know anything about polio know that all of the early epidemics in the first major, major epidemic was in 1905 in Sweden and in Norway. And at that time, that was the first time that people even believed in polio. In the United States, they called it the European Disease, wasn't real. That was polio. And when this happened, the first thing that was noted, and it's in our book, um, Understanding ME, is there was also at the same time, a huge epidemic of ME. They called it missed polio, but they described it very, very well. So polio and ME were associated ever since that epidemic, every major epidemic. The one in Iceland, it was polio and ME. The one at London Royal Free Hospital was it? Again, it was during a polio epidemic when that broke out amongst the staff. And that's another thing which is really important. Almost every polio epidemic, every ME epidemic that occurred together, and there was at least a dozen of them, occurred when polio and ME occurred at the same time. The second thing which was important, it was the people most exposed to viruses that came down. It's mainly nurses and doctors that are dying. And this is really terrible because in the last three years you can't get a bloody patient into see a doctor because they're frightened, stiff of the patients. And that's not what you're supposed to do, uh, and they didn't, and so many died, particularly in England and in, uh, Italy, I know less so in, in Canada. When the ME epidemic hit in 1983-84 in the States, but it started in Canada in '83, I had 50 doctors down with ME.

[00:05:56] Jill (Host): Wow.

[00:05:57] Dr. Hyde (Guest): What was good about that was they were able to get their disability pension immediately. The women, the nurses who came down with ME at the same time, because there were women, it was anxiety neurosis. So, there was a real, sexist prejudice in this. I would say, i, some 50 doctors we used to have on our records that fell ill with ME, most of them never got back. The doctors and I met one of them from, uh, the London epidemic in the, um, '50s, and he retired to Australia with his daughter. He never got back to work. I met, uh, two patients for 34 epidemic, uh, in Los Angeles. They never got back to work. ME is a disastrous disease, and if you see enough of them, you run into a big problem because you cannot tell where ME stops and starts and where polio stops and starts. It's like this.

[00:06:59] Jill (Host): Really?

[00:07:00] Dr. Hyde (Guest): They overlap.

[00:07:02] Jill (Host): So do you mind talking about that a little? Because I think our audience feels like polio was eradicated by the vaccine and we have no more polio anymore. What should we know about polio?

[00:07:15] Dr. Hyde (Guest): We will send you the hardbound copy, this third edition, and this was done with WHO [World Health Organization] in Geneva and me.

[00:07:23] Jill (Host): Okay. This is your book you're talking about?

[00:07:24] Dr. Hyde (Guest): Yeah. And this tells you all the polio in the United States. This little boy on the cover, Carter, that's him with his two teddy bears, he died. Why did he die? He went to the hospital with his mom. I think he was four years old. The doctor said, "Go away and come back in a week, and if you're not better, we'll see you then. You just got a bad cold." Why did the doctor say that? Because there is that little COVID machine that you take a sample of your nasal thing and you get a indication within 10 minutes whether you've got COVID or not, or had COVID or not. It doesn't exist for polio, doesn't exist for ME, and they're the same bloody group of viruses. So one of the problems is doctors are lazy. They really are, and I love medicine. I love physicians, and I know some of the great physicians to the world. But in general, the only way they make money is by seeing patients fast, getting them in and out. They're really not interested in in depth investigation because they're not paid for it. There is no schedule in Canada or United States that I know of, unless you're a psychiatrist, to see a patient for an hour and take an adequate history and take a adequate physical. Now, if you are a doctor, in the States or in Canada, if you do a complete physical, you are paid anywhere between $60 and $80. If you do that history and physical in five minutes, you're paid $80. If you do that history and physical in two hours, you're paid the same. And so doctors say, "look, if you've got a sore throat, if you got, you're feeling good, I I'll see you. No problem." But when it comes down to if you've got a chronic disease that requires a better history, the only person who's going to take that history is a psychiatrist. And unfortunate, most psychiatrists that I know in Canada who see these say "there's nothing psychiatric about this patient. This is physical." They send them back to the internist and the internist said that, "Well, I did a few tests, and then everything's fine." So maybe we could start, Jill, by saying, How do you diagnose a patient with ME or POTS? Which one do you wanna start?

[00:09:51] Jill (Host): Okay. Well let's start with ME since we've been talking about ME.

[00:09:55] Dr. Hyde (Guest): Okay. They're very similar. What doctors are doing wrong, Uh, and I'm talking about every research center I know of that is continually hitting the public for money, for funds, for research. First thing is none of those people running those institutions are physicians. They're PhDs. They've never seen a patient. So people are sending them millions of dollars. They're taking the blood and they're saying, "Oh, look what we found. Well, who are these patients?" And they're looking at them. They're looking at patients with fatigue. And one of the books, this Masso,

[00:10:32] Jill (Host): Fatigue by Masso, Okay. [Transcriber's note: The book is called Fatigue, written by Angelo Mosso.]

[00:10:37] Dr. Hyde (Guest): 1892.

[00:10:37] Jill (Host): 1892??!! He was writing about...

[00:10:39] Dr. Hyde (Guest): Amazing man. Amazing man. He actually had patients with fatigue with a hole in the top of the head that had had been blown off, and he put a machine on the head and he was able to show that he could measure fatigue and that fatigue was central nervous system. You didn't feel fatigue if it wasn't from the brain.

[00:11:01] Jill (Host): Oh, interesting.

[00:11:02] Dr. Hyde (Guest): So that's the start of ME. It's also, in terms of understanding, if you got ME, if you got POTS, if you got any dysautonomia disease, you have to go to the brain. So what do doctors do? Patient comes in, they say, "Doctor, I got this terrible fatigue." Now the first problem is there are at least 100, 200, 300 diseases that have severe fatigue. Most of them are post activity, post mental activity, post physical activity fatigue. In our original book, we showed [inaudible] incredible discovery on this. This was an ME patient’s brain with an old spect. Okay?

[00:11:52] Jill (Host): So for our listeners who will only hear this, you're showing me a bunch of brain scans.

[00:11:56] Dr. Hyde (Guest): Yeah, this is going to be free download.

[00:11:59] Jill (Host): Perfect. And we'll put a link in the show notes so that our listeners can download this for free. Thank you for your generosity.

[00:12:05] Dr. Hyde (Guest): That is a patient with ME, okay? So what they then did was they stressed that person. They stressed them by reading, they stressed them by physical activity. And as soon as they did that, this is what happened to the brain. Dark red is the functioning brain. You see what happened to it.

[00:12:25] Jill (Host): Oh, so their functioning part of their brain decreased?

[00:12:28] Dr. Hyde (Guest): Absolutely. Whether you gave them addition and subtraction tests to do, whether you gave them a book to read, whether you put them on a stress machine, that is what happened immediately.

[00:12:39] Jill (Host): Yikes.

[00:12:40] Dr. Hyde (Guest): Then a week after they, look at this.

[00:12:43] Jill (Host): They still had not recovered a week later.

[00:12:45] Dr. Hyde (Guest): A week after, they were actually worse.

[00:12:47] Jill (Host): Whoa.

[00:12:48] Dr. Hyde (Guest): We know this. We knew though, and those tests came from 87 and those were in a patient from a Lake Tahoe epidemic. Did the CDC, did NIH investigate them properly? No, because they secretly believed these were anxiety neurosis. You have to listen to the patient. You have to believe them. I have this wonderful book, it's called The Principles of Practice of Medicine by William Osler, and that is from 1905, this book. He has the best definition of chronic fatigue syndrome, ME, whatever you wanna call it. I hate the term chronic fatigue syndrome because it could be a hundred different diseases. But let me just read this off. This is his definitely mission. They called it neuro seenia then. Okay? Often arises after an infectious illness. Okay?

[00:13:42] Jill (Host): So they knew this?

[00:13:44] Dr. Hyde (Guest): Yeah. It is caused by cerebral and cardiovascular and gastric symptoms, so that goes to your area as well. Okay? [Reading from The Principles of Practice of Medicine] "It was me who asked John Chia to start working on the gastric side. He found enteroviruses. The other thing is there's a striking lack of accordance with the patient's complaints and physical findings."

[00:14:04] Jill (Host): In other words, they look fine?

[00:14:06] Dr. Hyde (Guest): Yeah, they look fine. [Reading from The Principles of Practice of Medicine] "Due to the fact that physicians are unable to assist the patient, they fall easy prey to charlton's and quacks. Some of the symptoms include imperfect sleep, inability to perform normal mental work, difficulty in doing addition, or even writing a letter." Disturbance of articulation, speech, loss of fixed attention, hyperesthesia, pain. Pressure joints are painful. Pain in the skin, eyes, joints, blood vessels. That's primarily the beginning of the disease. Head pains, primarily beginning. Anxiety in almost all patients fear of approaching death. Most of these patients who are really ill, they really think they're going to die." I mean, the pain, the loss of all your abilities is so terrifying and the doctors do a few blood tests. They check your sugar, they check your kidney function, they all come back normal and they say, This is anxiety. So this is a real problem. Hearing disturbances weariness on the least, exertion, numbness and tingling in coordination. Muscular weakness can be extreme. gastralgia and gastric hyperethesia, tachycardia, pain in the heart, air, palpitations, sweats, cold extremities, transient hyperemia." That's 1905.

[00:15:28] Jill (Host): Wow.

[00:15:29] Dr. Hyde (Guest): Yeah, it's in our new book. Uh, Understanding ME. So what happened to the doctors?

[00:15:35] Jill (Host): Right. Well, in other words, why, why so little progress? Is that kinda what you're saying?

[00:15:40] Dr. Hyde (Guest): Yes, and I think it's mainly because they don't have time to investigate these patients, where, I was lucky, we have a system in Canada where we can order any test on every patient in Canada, free of charge to the patient. Brain test, blood tests, urine tests, MRIs, PET scans, spect, anything, doesn't cost the patient anything. So I basically had a multimillion dollar financing by the Canadian government to investigate patients, as I saw a fit. Now did this make me wealthy? I have not made a penny in ME patients. Since I really started this seriously in in '85, '86. I've actually lost money both years. But as I told you at the beginning, I'm a brat. I've been playing the stock market since I was 12.

[00:16:38] Jill (Host): That's amazing [Laughs]

[00:16:40] Dr. Hyde (Guest): So I had something that these other doctors didn't have. I didn't have wealth, but I did have this obsession with making myself financially independent at an early age, and that was really important. But in terms of medicine, all of a sudden I get these patients I can't diagnose, and this started in 1983. So let's go back right to the beginning and say, You are ill. You were perfectly well yesterday or last year or a week ago, and all of a sudden nothing is working. And you look for a name. You go to the doctor and his doctor says, "Oh, we'll check your blood," and they check and the blood comes back normal. One of the things that was mentioned in this 1905 definition was something is wrong with the brain. So what do doctors do? Finally, they get around, they do a CAT scan, a CT scan of the brain comes back normal, unless they pick up a brain tumor, which has nothing to do but can cause fatigue. So the patient pushes 'em in more and they say, "Okay, we'll do an MRI.". MRI comes back. "You don't have MS - multiple sclerosis - miss. Uh, I think this is anxiety." What doctors don't is to get a good view of the brain, like this poor woman who was doing her masters and working in a hospital in Kingston, Ontario.

[00:18:08] Jill (Host): Mm-hmm. And you're holding up your Understanding Myalgic Encephalomyelitis book that you wrote.

[00:18:13] Dr. Hyde (Guest): And you see the black area of that girl's brain?

[00:18:16] Jill (Host): Mmm hmm.

[00:18:16] Dr. Hyde (Guest): That might have been a stroke.

[00:18:18] Jill (Host): Oh really?

[00:18:20] Dr. Hyde (Guest): Yes. There is no blood supply. You're do an MRI, it's not a stroke. What it is is complete shutdown of the blood supply in the memory section of the brain.

[00:18:31] Jill (Host): Wow. What makes the blood supply shut down?

[00:18:35] Dr. Hyde (Guest): The viral infection. Because the name myalgic encephamyelitis, if you forget about the myalgic part, it's an encephalitic injury caused by any disease, but primarily viruses in the epidemic stage, and hence the connection to polio because that is an encephalitis and neuritis of the spine. What is not known about polio is it just didn't hit the anterior columns of the spinal cord. It. Both the posterior, which was not measured that often, but also the brain. When it hit the brain, the people died. And when ME patients hit the brain, which is every time, if it's severe enough, they die too. But the doctors say, "Oh, this patient died of an encephalitis", which is true, but what we've forgotten is when the polio epidemics hit in 1905, the serious ones, and it got worse and worse after that, what really happened in 1905 is these people had brain shut down and the big neurologists in Paris said, "Oh, this is mass hysteria." This was polio. They called it mass hysteria. Two years later, the epidemics hit Paris. It was no longer mass hysteria. So again, this is perception. So what the patient has to do is say, "I need a spect, because most doctors have no idea what a spect scan is.

[00:20:06] Jill (Host): What is a spect scan?

[00:20:08] Dr. Hyde (Guest): It's looking at the blood supply of the brain. What it is is a nuclear medicine brain imaging, which looks exactly like a, um, an MRI machine, but it's not magnetic. It uses nuclear medicine. And it can show the damages done to the brain. What is terrible about this, for instance, this girl will never recover because the injury is so massive.

[00:20:35] Jill (Host): The picture on the front of your book, yeah.

[00:20:37] Dr. Hyde (Guest): Yeah. It, it, it's massive in this poor girl. What is really important in this is that you can measure it. As soon as you measure it, you know what's going on. If you send the biopsy of the gastric mucosa to Dr. Chia in California, he can say, "Yes, we have an overwhelming amount of enterovirus situated in this area." Can we do anything? No, we can't do anything. If you fall ill with polio, you would expect that as soon as the person is diagnosed, they can treat it well. First of all, they have no diagnosis of polio until it's too late. They can take the spinal fluid and grow it in their lab, and they can show the enterovirus causing polio one, two, or three only. So they got the diagnosis. There's no treatment. What happened in 1960 when Dr. Sabin put out his immunization, his polio immunization. There was something like a hundred thousand researchers around the world, probably 20,000-30,000 in the United States alone, working on polio. Overnight, we've solved the problem. Fire them. We don't need them anymore.

[00:21:55] Jill (Host): Well, yeah, that's what we all understand is that polio was cured by the vaccine.

[00:22:01] Dr. Hyde (Guest): No. So part of the problem is that polio research shut down. Polio is just an enterovirus. They only had three enteroviruses in the immunization, polio, one, two, and three, to make it simple. There are now 25 different enteroviruses that can cause polio. And that's what's happening. And this is what this little boy, Carter Roberts, died of, and if anybody out there can get this information to start looking at this seriously, it would be wonderful. But doctors are more interested right now in avoiding Coronavirus than anything else.

[00:22:44] Jill (Host): Well, is there an analogy there? So when you talk about polio viruses one, two, and three, do you mean that there were basically like three variants that were addressed properly by the vaccine, but then there were other variants that were not addressed by the vaccine and it's those variants that are still able to cause problems?

[00:23:03] Dr. Hyde (Guest): Absolutely. United States Central Health Intelligence has really done some bad things. They insisted up until 1937 or '38 that polio was a bacteria. The Europeans knew that polio was caused by virus since 1909, I believe it was, 1910. And the Rockefeller Center, who was in charge of polio in the United States then said, "These people don't know what they're talking about. It's, it's a bacteria."

[00:23:37] Jill (Host): So why does it matter?

[00:23:39] Dr. Hyde (Guest): Because you can treat a bacteria with an antibiotic. When I had polio, when I was, I guess in grade 8, they put me in the hospital and treated me with penicillin, which did absolutely nothing whatsoever. It was, It was great being in the hospital for week. Didn't have to put up with my mother.

[00:23:57] Jill (Host): [Laughs]

[00:23:57] Dr. Hyde (Guest): Then I was sent home for a year in bed, which was absolutely wonderful because I hated school.

[00:24:03] Jill (Host): But So you had polio for that entire year, you were in bed with polio?

[00:24:07] Dr. Hyde (Guest): Yeah, it was wonderful. No pain. And they didn't have homeschooling then. And what happened was we had home librarians and I was picking out all these books, "Oh, can you get me this book?" And she says, "Those are too old." I said, "No, no, no. I want those." And so I had a whole year basically in bed with books and weekly. Visits from a librarians and librarians are wonderful. Libraries are wonderful. My life was saved by women and libraries.

[00:24:38] Jill (Host): Wow. And ironically having polio enough to get you into that situation, but not bad enough to kill you.

[00:24:46] Dr. Hyde (Guest): Yeah, the only problem with polio is after that I could never walk upstairs. I had to run, uh, I could run upstairs, but I couldn't walk because my anterior reflexes. So let's get back to, Can I get back to POTS? What is POTS? What do you think POTS is? You tell me.

[00:25:02] Jill (Host): It's the bane of my existence. It's, it's seems to be, uh, my heart going crazy whenever I try to stand up. What, what is POTS to you?

[00:25:13] Dr. Hyde (Guest): POTS is a failure of the pressor receptors. Does that make sense to you?

[00:25:17] Jill (Host): Pressor receptors?

[00:25:19] Dr. Hyde (Guest): Yep. That's what POTS is.

[00:25:21] Jill (Host): Are those the receptors that are trying to figure out blood pressure?

[00:25:26] Dr. Hyde (Guest): Yeah. In part.

[00:25:27] Jill (Host): Okay. So explain a little more.

[00:25:31] Dr. Hyde (Guest): The first pressor receptors they knew of.

[00:25:35] Jill (Host): Okay. And you're pointing to your neck.

[00:25:37] Dr. Hyde (Guest): Yeah. On the ascending arteries going to the brain. Right at the bifurcation, there's a little computer that measures the amount of blood going to your brain and it increases when you need it and decreases when you don't. Okay?

[00:25:53] Jill (Host): Okay. So I makes sure you always have the right amount of blood going to your brain or not?

[00:25:56] Dr. Hyde (Guest): Yeah. So this was a dysfunction that happens in all migraine people. They have a problem with that pressor receptor, and that was the first pressor receptor they actually discovered, I believe. So the next thing that happened is if you've got POTS, you've got receptors all over your body. You've got receptors that govern the speed of your heart. You've got the pressor receptors that govern the blood supply to your brain. First of all, the human animal is really a brilliant computer. And what happens with the body is there's not enough blood in it to supply the body. You knew that you've got enough blood to supply your body for about 60% of its functions only. So what does the body do? Says "if you're running we'll send the blood to your legs, we'll send the blood to your heart." So you get increased blood to your heart and increase your legs, cuts it off from the brain, cuts it off from the gut.

[00:27:04] Jill (Host): Right.

[00:27:05] Dr. Hyde (Guest): So you got enough blood to keep your brain going, your heart going, and your legs, okay?

[00:27:11] Jill (Host): That's why a lot of people throw up if they eat too much and then exercise too hard, right?

[00:27:16] Dr. Hyde (Guest): This is why people who've just had a big meal and go swimming, drown. All the blood going to the the stomach is taking up most of the blood, so there's not enough blood going to the legs. You get leg cramps and you drown. So this is again, the problems with the pressor receptors. And I think you mentioned Peter Rowe at John Hopkins or I did. Uh, and David Streeton, who was at uh, Syracuse University, they basically were both shamed. There's no such thing as POTS. Peter Rowe persisted. David Streeton died, although he's the king and the person who started the whole concept of POTS, died not knowing that anybody believed him. It was a tra a tragedy, and yet, so we have all of this going on, which is a problem of people believing the patient.

[00:28:08] Jill (Host): That's amazing that they seem to have known just as much about ME and maybe even POTS a hundred years ago.

[00:28:18] Dr. Hyde (Guest): Yeah.

[00:28:18] Jill (Host): So I, I have a question for you, I guess first of all, Do we know why POTS and ME tend to occur together so often, and why has progress been so slow on both of these things?

[00:28:36] Dr. Hyde (Guest): POTS is just a physical symptom of ME. We talked about POTS being a problem of the pressor receptors, right?

[00:28:47] Jill (Host): Mm-hmm.

[00:28:48] Dr. Hyde (Guest): Who controls the pressor receptor? Now you know that because that's your business.

[00:28:53] Jill (Host): Well, it feels like in my case, it's evil demons are controlling mine. [Laughs].

[00:29:00] Dr. Hyde (Guest): All of the pressor receptors are controlled by the brain and they're controlled by one area in the brain, and the area is the basal ganglia. Now the basal ganglia is buried really, really deep in the brain. So if you have a concussion and knock out part of brain, the part that's actually running your body is right so deep that it can't be injured by a concussion, a car accident, football accident, unless it's hit by a viral or other infectious disease. That is what controls all the cerebral receptors in the body. And one of the nice things about the spect scans, spect scans shows the basal ganglia and shows it very beautifully. Basal ganglia are important because it's what leads to Parkinson's, but in the epidemic that hit iceland in 1946 to 1951, these epidemics lasted a long time. In that epidemic, it started in a school right next to the hospital. I was happy enough to be invited by the government of Iceland to see some of those patients who fell ill when I found the kids. When I went to visit this school in Iceland, five or six kids were in the hospital was right beside it. The kids were crawling through the garbage bin, picking up loot, and lots of good stuff in garbage. So that's probably where they picked it up, from people who'd fallen ill in the hospital.

[00:30:35] Jill (Host): Oh!

[00:30:37] Dr. Hyde (Guest): And then the whole school went down. The kids took it home, and this is true of a lot of diseases. I, I mean, infectious mono, if you get infectious mono up to the age of puberty, you get a cold, you get sniffles, you may not get anything. If you get it after puberty, you get the big glands and you are sleeping all the time. You feel like you've got ME or CFS. But if you get it for the first time, infectious mono when you're 30, boils your brain and your brain is no longer functional. If you get it when you're pregnant, and I've had unfortunately, a wonderful, uh, lady, uh, patient Canadian broadcasting reporter who was pregnant. She died. I've had two patients with mono who died because they were pregnant. So the older you get, the worst that disease is, and this is why you don't see ME that often in kids under puberty. But starting at puberty, it gets worse. When you get to be an adult, it gets even worse. So this is all part of the situation. So let's get back to POTS. POTS is cerebral receptors, and the cerebral receptors govern where the blood goes when you need it. When you're studying for your exams, it goes to the brain. When you're running, it goes to your legs and your heart. So you need the cerebral receptor because you've only got 16% of the blood you need to supply the whole body if you're blowing it. That is all governed by the basal ganglia in the center, most protected part of the brain, and it can be measured on a spect. That is POTS.

[00:32:25] Jill (Host): And the main reason that you see that malfunctioning, you think is because of an enterovirus that causes some damage to that part of the brain?

[00:32:34] Dr. Hyde (Guest): Absolutely, and we know this now. When I was working at Dr. Peter Rowe's lab in John Hopkins, I wasn't there long, I was there for a week. What they did was they took the patients, and this is how bad POTS is, they put the patients on a table and then they invert the table and they keep them there for, I don't know, 15 minutes, 20 minutes. So their heart and their cerebral mechanisms are able to say, "We don't need blood going to the heart. We don't need it going to the brain. We don't need it. It can go and start digesting your breakfast or your lunch."

[00:33:15] Jill (Host): That's when you're laying flat?

[00:33:17] Dr. Hyde (Guest): Yep. And so they tilt the patient up. Now, this is how dangerous POTS is. When I was there, they tilted the patient up to vertical her heart stopped and she died.

[00:33:30] Jill (Host): Whoa!

[00:33:31] Dr. Hyde (Guest): This is POTS. And if you don't think POTS is serious out there, it is a hell of a serious disease. So if you get up and do it really fast, you're probably gonna fall over because you probably won't die. But in that case, she died, but they knew in advance because they had done this many times that that was a possibility. So they had the cardiac unit in the hospital, in the operating room with us at the same time they started her heart up and she survived.

[00:34:00] Jill (Host): Oh my gosh. Wow.

[00:34:02] Dr. Hyde (Guest): But that is how dangerous POTS can be in some people. So this is a serious bloody disease, and it's caused by a failure of the cerebral receptors and also by the injury to the brain caused by an encephalitis, which can be easily, easily measured by a spect scan. Now, can I talk about spect scans for a minute, because that's important?

[00:34:26] Jill (Host): Please, yeah.

[00:34:28] Dr. Hyde (Guest): We use a software produced by Segami. Now Segami is a company in Washington, DC who along with Dr. Ismael Mena, who did those initial scans I showed you, they developed a software where even a kindergarten child can give you a brain diagnosis. What Segami did was they took the the software and made it into three dimensions. This brings back all the information in your storage system. It sends it to up here. This is the motor cortex. So the motor cortex isn't just the posterior and anterior spinal cord, it's also the brain. This part runs the function of your arms and legs when you're moving. So when the doctors do a nerve conduction test on your legs, they say there's nothing wrong with your nerve conduction. You can walk. And a lot of POTS patients, a lot of ME patients, they say, "Look, I can't, I walk, I get tired." They, they, they do the nerve conduction. They say there's nothing wrong. They do, uh, your spinal cord, nothing wrong there. They have to go back that also the brain regulates these. Its decreased function. So it works when you're resting. It works when you're up and round and not doing much, but as soon as you try to do too much, and each person is different because each person's injury is vary, you have total shutdown. Unfortunately, it takes the brain a week or more sometimes, depending on how Ill you are, it might take you a month to get back prenormal position you were when you went down. So it's measurable. And this is what is important and you need a Seg spect. Now, the nice thing about Segami spect, if your hospital doesn't have Segami spect, all you need is the electronic information from that, and you can send it to someone uh, who has spect?

[00:36:44] Jill (Host): And this test is spelled S P E C. It's a SPEC scan?

[00:36:49] Dr. Hyde (Guest): S P E C T Scan.

[00:36:50] Jill (Host): Spect. Okay. So if you do have a patient that has a clear sign of of this problem on a spect scan, is there anything that you can do for them?

[00:37:03] Dr. Hyde (Guest): It's the same answer with polio. You can get them disability pension if they've got a disability pension because one of the biggest problem POTS patients, ME patients, have is the insurance companies won't pay them and they pay the wealthy people, they pay the doctors right away to Totally. They paid the politicians. I had, I don't know how many Canadian politicians in the three or four who came down with ME during the epidemic in '83 to between 93. It went about 10 years, that epidemic, they immediately got full pension.

[00:37:40] Jill (Host): So you're saying that the people who have some clout, who have a voice, have some influence? Those people tend to get paid?

[00:37:47] Dr. Hyde (Guest): Yep.

[00:37:47] Jill (Host): But not the, not the little people?

[00:37:49] Dr. Hyde (Guest): And this is important because who are the people who most fall ill with POTS and, uh, most fall ill with ME? They're like yourself. They're teachers, healthcare workers, who come in contact all the time with infection. So the nurses don't get paid. They, they have to fight for it, and they still don't get paid. Some of them do. We have to take them to court. And I've spent a lot of time over the last 20 years, uh, going to court, usually winning because they give up on the doorstep. They don't want to, they don't want this to go down. So the day of the court they say, "Okay, we pay."

[00:38:31] Jill (Host): And I think I've seen in some of your other interviews, is it correct that you've said that you think that people who are able to get some sort of payment, basically they do better because that stress is taken off of their plate and, and that basically being able to live a somewhat comfortable life without that chronic financial stress?

[00:38:55] Dr. Hyde (Guest): I've got this wonderful patient, a Jamaican lady who worked for the United Nations and the, uh, Commonwealth Secretariat. In her job, she went to every country for the Commonwealth - that was in the tropics to - get facts and figures on illness and what have you. She picked up every disease known to God and men. She was walking library of disease, but she fell ill. She get on insurance, she gets better. One of the things that is mentioned in this book, 1905, if you put these people to bed for a year, they get better. Now, who falls ill most? Healthcare workers. Who are the primary healthcare workers? Women with babies, with children, with husbands.

[00:39:48] Jill (Host): Responsibilities.

[00:39:50] Dr. Hyde (Guest): Responsibility. So they don't ever sleep. They get up, they get as much done for their kids. They get as much done for their house, and then they collapse. They never have time to recover. When I fell ill in '84, I was walking along the street, I felt quite fine and I don't remember another thing. I wake up, I'm in the hospital. I called the nurse. I said, "How the hell did I get here?" They said, "Oh, you collapsed. You passed out and we'll call the doctor." The doctor comes in and says, "We just did a spect scan on you. We couldn't get an MRI, but we think you had a stroke." And their spect scan was very primitive and it showed that whole area in this girl as black. They said, "You've got a massive brain tumor in your brain, Dr. Hyde." I said, That's nice. I felt pretty lousy, and they said, "Well, we're getting an MRI tomorrow, but it was blocked and, uh, so we'll be able to get more information on that, Dr. Hyde." So the next day they wheel me in, get an MRI. Doctor comes back and says, "Oh, Dr. Hyde I made a terrible mistake. There's nothing wrong with your brain. Showed up in the spect." So I was in bad shape. I was in the hospital for about a month. Couldn't walk. I was in so much pain that I couldn't actually get outta the bed to go to the bathroom in the hospital. They had me connected up with wires and tubes. I was quite a mess. It was fun. I thought I was really going to die. I was sure I was going to die. I had four small kids then by then, yeah. And I said, What's gonna happen to my kids? I was basically mother, Father, cook, which I loved. So I was scared stiff. What's gonna happen to my kids? I get home. Pain saved my life. I was in so much pain. I couldn't move, I couldn't get to the bathroom. Fortunately, I have this wonderful secretary, her name is Margaret. She took care of me and she brought me food, but I didn't eat because if I ate, I had to go to the toilet. And it's very embarrassing if you have to do number two, and you've got your secretary emptying your belly pot. And I didn't eat, which was really good because I was overweight and I lost 40 pounds

[00:42:22] Jill (Host): [Laughs] OK.

[00:42:22] Dr. Hyde (Guest): So this went on for basically a year before I could actually get around and move again. Because of the pain was so severe, I had obligatory bedrest and my brain got better. This doesn't happen to women.

[00:42:40] Jill (Host): Do you think this was a resurgence of the polio you had as a kid?

[00:42:45] Dr. Hyde (Guest): Oh, no. What happened was I was physician to one heroin addict whose husband had left her, he was a heroin addict too, who had totally stopped heroin on her own. Wonderful girl. I just loved her. And she called me one night during a storm and said, "My three kiddies are ill." She had a two year old and two newborn twins who were about three or four months. "Could you come?" I said, Sure. So I did a house call. It was obvious right away they had pneumonia and I called for an ambulance, but all the ambulance were busy because of the car wrecks, because of the storm on the highway around Ottawa. So I drove them to the hospital, to the children's hospital here. Mother had pneumonia too. The three kids had pneumonia. They coughed all the way. I had the window shut because it was pouring rain outside. You could hardly see in front of the car. I was in a viral incubator for about 30 minutes, getting them to the hospital. Three days later is when I collapsed.

[00:43:51] Jill (Host): Ah.

[00:43:52] Dr. Hyde (Guest): So I knew the incubation period of the enterovirus. I didn't know it was an enterovirus then. And the incubation period was three days or less. When I woke up in the hospital, I phoned the Children's Hospital to see how my kids were doing. They said, "Oh, they have a Coxsackie," which is an enterovirus, very, very close to polio, which causes polio, "and they're doing okay, but they're gonna be here for another two or three weeks." I remember having lunch with Dr. Saban who invented the oral anti polio vaccine. I had lunch, he invited me to have lunch with him at his apartment in Washington, DC and he said, "You know, Byron, I've already found a couple more enteroviruses which which caused polio, and they're gonna have to get them into the new immunization, which I'm working on." He died shortly after. Wonderful, wonderful man. He was already working on that, but they stopped shortly after they fired everyone because the problem had been solved.

[00:45:02] Jill (Host): Oh.

[00:45:03] Dr. Hyde (Guest): He knew then that we had to do more and they just stopped working it.

[00:45:09] Jill (Host): Wow. What a shame. And so do you think that accounts for a lot of the ME that we see today?

[00:45:16] Dr. Hyde (Guest): I think it accounts for all of the ME, enteroviruses. Now, a lot of people who have what is called chronic fatigue syndrome, chronic fatigue syndrome, doesn't exist. You cannot define a disease by a symptom because fatigue, as I mentioned earlier, can occur in 100, 200, 300 different diseases. Post exertional fatigue can occur in over a hundred kinds of diseases. You must never mistake a symptom for a disease. You have to find the cause, and the cause can be infectious, it can be genetic, it can be all sorts of different things. For instance, rheumatoid arthritis, there's been a lot of research in rheumatoid arthritis and its relation to German measles. What they found is that if you get German measles, when you're a child, nothing happens. If you get German measles, uh, later you can get rheumatoid arthritis, but that's just one sort of rheumatoid arthritis. Rheumatoid arthritis is probably two or three different diseases.

[00:46:26] Jill (Host): We've talked on that podcast before about the theory of molecular mimicry...

[00:46:30] Dr. Hyde (Guest): absolutely.

[00:46:31] Jill (Host): ...just thinking that that German measles has a molecular shape that looks like some people's joint tissue somehow. So if you're immune system attacks, one, it attacks the other.

[00:46:42] Dr. Hyde (Guest): Yeah, absolutely. You're right on. A hundred percent. It is molecular mimicry. So this whole jungle of medicine is, it is such a fascinating world and such a fascinating investigation.

[00:46:57] Jill (Host): Well, absolutely. And we are running out of our time for now, but we would love to speak to you again sometime. But before we let you go, can you just tell us about the books that you have written and how maybe in the near future they might be available online for download and, to the audience, Dr. Hyde, his foundation is putting these books online so that they can be free to download on his website, I believe.

[00:47:28] Dr. Hyde (Guest): Ever since I've been a kid, I've been writing, so I've got lots of books out. Don't know if anybody ever reads them, but I like writing them.

[00:47:37] Jill (Host): You even have some book of...of prose out and poetry. Do you wanna just give us a quick rundown of your books?

[00:48:26] Dr. Hyde (Guest): Do you want a poem?

[00:47:37] Jill (Host): Yeah, absolutely. And I'll just say to our listeners, you know listeners, when I get ready to interview someone, I feel like I'm almost stalking them online because I look at everything they've written and their interviews and their videos. And if you do the same for Dr. Hyde, you will see that he has been very prolific for many years with books about myalgic encephamyelitis, about other things, and that he's just an absolute source of information that you will not hear anywhere else. So I encourage you to check out everything that he's published.

[00:48:26] Dr. Hyde (Guest): This is book is called Poems to Celia. She was my Spanish teacher in southern Spain. So I'd like to read you the last one of. This is, um, called Pastillas, which is candy. I wrote for a child. He says, Don't cry my child, nor with sadness recall those times gone by, that gave you joy. These things are not all gone like pastillas, like candies. Not all good things in solid form are meant to last. It is a comedy, a pastilla, a candy. You don't put them in a museum under glass, never tasted, never changing. Some things are meant to be gone too soon. Good things are like pastilla to be consumed, to consume you.

[00:49:18] Jill (Host): Wow, that is beautiful and I expect it probably resonates with so much of our audience too. Well, Dr. Hyde, speaking with you is such a treat. You have so much knowledge and so much experience.

[00:49:35] Dr. Hyde (Guest): It was an honor to speak to you and a joy, and thank you very much for calling.

[00:49:42] Jill (Host): Well, we just thank you for your work and the generosity of, you know, living this unusual life and believing patients and losing money on every patient [Laughs] and figuring out other ways to support a way to be such a, a caring doctor, and to have created these books and make them available.

[00:50:08] Dr. Hyde (Guest): What we need is two things. We need a rapid test to diagnose polio and ME. The same test would work for polio as it works for ME. So kiddies like this little boy don't have to die of the new polio. I think that's really important and then they can start working on a treatment because if they can find a medication which will affect this vascular disturbance of the brain, I think we could bring back a lot of the POTS patients, a lot of the ME patients in the United States and Canada and and Europe. So we need, first of all, someone to finance the hospital, the major hospital, any of the major hospital systems in the United States. We need them to work on the new polio because I am persuaded that if they can get a treatment and a prevention for that, they could prevent ME and they could also treat these people with POTS, treat these people with ME, maybe not get them back to where they were, but make them functional again. And I think that's what is absolutely essential and that's what Nightingale is working on right now ,and we will succeed.

[00:51:22] Jill (Host): Excellent.

[00:51:23] Dr. Hyde (Guest): But time is short. I'm 86. I'm hope I can keep bothering the world for another 15 years.

[00:51:31] Jill (Host): Well, we're so glad that you're bothering the world. And patients, listeners, we will put links to all of these books in the show notes so that you can find Dr. Hyde's work and you can find The Nightingale Foundation. So that's all for now, but we hope you enjoyed this episode. We'll be back next week. So until then, thank you for listening. Remember, you're not alone, and please join us again soon.

[00:51:56] Announcer: As a reminder, anything you hear on this podcast is not medical advice. Consult your healthcare team about what's right for you. This show is a production of Standing Up to POTS, which is a 501(c)(3) nonprofit organization. You can send us feedback or make a tax-deductible donation at www.standinguptopots.org. You can also engage with us on social media at the handle @standinguptoPOTS. If you like what you heard today, please consider subscribing to our podcast and sharing it with your friends and family. You can find us wherever you get your podcast or at www.thePOTScast.com. Thanks for listening. © 2022 Standing Up to POTS. All rights reserved. [Transcriber’s note: If you would like a copy of this transcript or the transcript for any other episode of the POTScast, please send an email to volunteer@standinguptopots.org]