How Changemaker Dr. Eleanor Stein Healed from ME/CFS and Fibromyalgia

YouTube interview with Dr. Eleanor Stein:

Written transcript of our interview:

[00:00] Liz: I’m so grateful today to be interviewing Dr. Eleanor Stein, a changemaker in Canada, who is going to share with us her 27 year ME/CFS and fibromyalgia recovery journey, which initially knocked her down in residency.

She’s going to share key epiphanies from her long and winding road from being barely able to walk two blocks to getting her life back and how she’s paving the path for others to heal and for recognition in our healthcare system. 

Dr. Stein, I’m so thrilled to have you here with us today.

[00:38] Dr. Eleanor Stein: Thanks so much, Liz. It’s a pleasure. You know, I really haven’t told my story in a lot of depth very many times, so I’m kind of looking forward to what you’re going to ask and see where we go with this.

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[00:50] Liz: All right. So to start off, what is your purpose for sharing your story today?

[00:58] Dr. Eleanor Stein: You know what? It’s all about hope.

For the first 27 years of my illness journey, I didn’t think there was any hope. I had never met anyone who had gotten significantly better. All of the narratives out there, both in the medical community and in the patient communities were uniformly dismal and discouraging.

And I just took it for granted that how I was barely getting through every day was going to be it for the rest of my life. And it wasn’t until I – even though I was doing masses of stuff – it was only when I suddenly got better that I went, “Oh, there’s hope.” And that was in 2017. And since then, of course, I’ve totally changed my narrative.

And now my goal is to make sure that everyone else out there knows there is hope. 

That doesn’t mean every single person’s going to have an incredible recovery, but what I’ve experienced since I changed my own mindset is that most people can get at least a little bit better, if not more, and that improvement is the rule, not the exception.

Improvement is the rule, not the exception.

And that’s a total flip from how I was thinking about it before.

[02:19] Liz: Yeah, and let’s take it back to 1989 when your health initially collapsed. Can you just give us a brief overview of the onset and what was your perfect storm if you had one?

[02:34] Dr. Eleanor Stein: Yeah, you know, I’ve obviously really thought about that a lot.

I think looking back, the biggest factor was being in medical training. So you’re taught as a medical student, and then as an intern, and then as a resident, that the patient comes first, and it doesn’t matter day or night, right?

You’re on call constantly, and you have to put down what you’re doing, which includes things like eating, sleeping, using the toilet.

We used to have a joke in internship. One of my colleagues used to come in when we were like running like crazy and he’d say, “Remember, nobody thanks you for missing dinner.” And we thought he was a little bit crazy, but now looking back, he was the wise one and we were all a little bit crazy, but the culture in medicine is [that] self care doesn’t figure into it at all.

So I think for me, there was not much else going on in my life. I mean, I have some genetics, right? So I have some vulnerability. Both of my parents have some issues that I’ve inherited, like low blood pressure. And stuff like that. And chemical sensitivity runs in my family and some autoimmune stuff runs in my family.

So I think I had some vulnerability, but I was doing pretty fine. I went to a workshop in another city on the way back, someone was dropping me off and I just thought, “God, I’m coming down with the flu. I do not feel good.” I went to bed and that was it. And it never got, you know, some people say it was the worst flu ever.

It was not like that for me. It was very subtle, but then it just slowly, slowly, slowly progressed over the next three months until I was pretty much incapacitated.

[04:20] Liz: Yeah, and even though it might have been a more milder flu, it sounds like you’re going through residency, which is the most grueling time in a doctor’s career.

You don’t get much sleep. You have to work, how many hours a week is it?

[04:36] Dr. Eleanor Stein: You know, I chose my residency carefully. So I had one of the residencies in Canada with the least amount of calls, so I was on call every fourth night for four years. So that means every fourth night, you get little to no sleep. And that was the best possible residency, like I researched every single program.

And I guess I must have already instinctively known that sleep was important to me, because some of my colleagues on purpose applied for residencies that had one in two call. That means you’re missing a night of sleep every other night for four or more years.

I’m researching right now for a talk I’m going to give in the new year on sleep. And I’m just inhaling all this information about the negative impacts of poor sleep or insufficient sleep. 

So I think medical training is just a setup for illness.

[05:30] Liz:  Exactly. And the people who are able to survive it, if you’re able to even go into that, might not be aware as much because it really weeds out a lot of people and then doesn’t set up the rest of society for success when those doctors then are helping people.

But you were able to turn it around, and are now helping people. So we can hopefully change that by sharing our stories.

[05:59] Dr. Eleanor Stein:  Yeah.

Just to pick up on something you said, I hadn’t really thought about this before, but the culture that we are a part of in medicine may be related to why doctors are so unhelpful to people who have chronic complex conditions

Right, because they’re like the Navy SEALs, toughness is really applauded and weakness or [Dr. Stein makes hand gesture quotes] “laziness” or fatigue or anything that’s less than 110 percent performance is really frowned upon.

And so here you have doctors who are in this unhealthy culture who are now faced with trying to help people who are you could say maybe at the other end of the spectrum as they are in terms of, let’s just say energy, right?

And I think it’s no big surprise they just don’t get it.

And they’re not really emotionally open to it because we’ve been in this culture that supports the opposite of not paying attention to your needs.

[07:04] Liz: Yeah, it’s so interesting when I think about how can we solve this. One of the first things looking back, I think of is make life easier for doctors because the doctor that I told, I remember I told my cardiologist, I was born with a congenital heart condition.

About four years before my health collapse [I think it was two years before actually], I was like, “I’m just so stressed. I’m so stressed.” I was working with international projects. So sleep was often an issue and I just wanted him to write a note to just relax. But he was like, “Everyone’s stressed.” He was advancing in his career at the hospital and he just had a baby.

So it’s like, he’s like, “Everyone’s stressed.” But that was my cry for help, you know, at my annual appointment with him. Yeah. We don’t care enough about doctors. So I’m so grateful to be talking with you about this because it’s what I’ve always felt. And here you are saying it and wow. Yeah. Sharing us your experience.

[08:03] Dr. Eleanor Stein: It doesn’t excuse doctors, right. And it doesn’t make it any better. But I think it might go some way to explaining why we’re just this horrible mismatch when it comes to something like ME where, you know, it’s not stress, right?

I mean, stress might have been part of the contributor, but it’s like this lack of cellular energy that no matter how tough you are and how type A you are and how determined you are, you just can’t overcome it.

[08:30] Liz: Yeah, exactly. Yeah, I had a whole perfect storm of things myself.

[08:35] Liz: Okay, so can you share with us what were your key health challenges and symptoms and your diagnoses? Maybe it took you a while to get those, but what were some of the key symptoms you were dealing with in the beginning and then over the 27 years?

[08:53] Dr. Eleanor Stein: 

So from the time I became ill until the time I got significantly better, I had some very small ups and downs. At times I would find some new supplement protocol, and I’d be like, “Oh my gosh, this is the thing!” And I’d feel better for a couple months and then I kind of slide back because the body, it’s very smart, it doesn’t like being pushed out of homeostasis, and if you try to push it in a direction it doesn’t want to go, it fights back.

So by far my biggest symptom was post exertional malaise.

I remember walking, I lived two blocks away, you mentioned the two blocks, so I lived two blocks away from the grocery store, and I lived about four blocks away from my therapist, because of course one of the first things I did was get into therapy because I had no idea what was going on. 

I needed a lot of support, and I would walk there incredibly slowly in my little sweatsuit, which I never changed out of and notice how heavy my legs were like just walking on the flat on pavement for a few blocks was just so difficult. 

So I was probably sleeping at the beginning 18 hours a day, maybe even 20 at some points.

And then, as so often happens, I’ve observed it with my patients over time that hypersomnia changes to insomnia. 

And then you’re equally as tired, but you can’t fall asleep. So I had that for the entire duration. I still have some sleep challenges, but my sleep problem now is a totally different problem than what I had throughout my illness.

I would say my chemical sensitivity, like I had always been a little bit sensitive, but it just blew up. 

I was the one wearing the mask in the grocery store and stuff like that for many years. 

I always had low blood pressure. I was always prone to fainting, and it just again went berserk. Yeah, as an intern, I passed out in the OR and contaminated the whole situation and they had to start, like, do everything over and bring all new instruments.

So that (fainting) was just happening most days, and it was several years until I met a physician who understood about POTS

and Florinef, which I’m still on. 

[11:51] Liz: So, POTS is Postural Orthostatic

[11:53] Dr. Eleanor Stein: Tachycardia syndrome. So, basically your blood pressure goes down, your heart rate goes up to compensate, but it never quite compensates enough.

And I mean, I’ve probably passed out hundreds, if not thousands of times. Wow.

[12:10] Liz: And before it was more occasionally. And then it was like on a daily basis.

[12:15] Dr. Eleanor Stein: Yeah, after I became ill, it was just like, I couldn’t. You know, I still have low blood pressure. Now I know so much more. I realized the whole hypermobility thing, it all comes as a package.

So that’s genetic. Everybody in my yoga class is envious. They think it’s so great to be super flexible, right? And I’m like, “No, no, no. Be careful what you ask for.”

[12:38] Liz: Yeah, I know that hypermobility, I think it’s also called Ehrling Dengler Syndrome? 

[12:44] Dr. Eleanor Stein: Ehrlers Danlos. Yeah.

[12:46] Liz: And that’s somehow linked to this. I don’t know how it’s linked, but it is.

[12:51] Dr. Eleanor Stein: Yeah, it’s definitely linked. I mean, that was shown more than 25 years ago by Peter Rowe, Professor Peter Rowe. at Johns Hopkins. So I think the low energy makes it harder to keep blood pressure up. We have little muscle cells in the walls of our tiniest arterioles, like little, little tiny cells. And if those little muscle cells don’t have enough energy, they just are floppy, right?

And so the research shows people with ME have blood pooling often. You know, that’s why support hose is one of the sometimes very helpful recommendations. And so you have a combination of a genetic predisposition to having floppy blood vessels, and then on top of that now you don’t have enough energy for the little cells to work.

So I think that’s my non-scientific understanding of why people with low blood pressure and we’ll just say connective tissue disorders in general are more vulnerable.

[13:54] Liz: Yes, I actually have low blood pressure too, or it’s genetic, yes, my  mom also has it. 

[13:59] Dr. Eleanor Stein: Those were the main things.

[14:19] Dr. Eleanor Stein: And just frustration and anger, right?

Because even though I’m a physician, nobody knew what I had, it didn’t really make any difference. 1989, there was no treatment. The Holmes criteria had just come out in 1988, and there were probably exactly five people in the world who, well, I’m being a bit dramatic, but you know, there was the people on that CDC committee.

And they were pretty much the only people in the world who knew anything at that time. 

So just like all of my patients, I was diagnosed as having depression because my doctor just didn’t know what was going on.

[14:56] Liz: Yeah. Sleeping a lot and they’re like, “Oh, that’s depressed people sleep a lot.” And then I guess he got sent off with some SSRIs or…

[15:08] Dr. Eleanor Stein: Well they didn’t actually exist at that time.

[15:10] Liz: [Mutual laughter.] Yeah. So they just told you to see a psychiatrist?

[15:18] Dr. Eleanor Stein: Yeah, I did. I went along to a psychiatrist. I went on doxepin. So that’s an old tricyclic antidepressant. And it actually was a little bit helpful because I don’t know, it somehow helped my sleep a little tiny bit. And so I think it helped me consolidate my sleep a little bit.

So it did help me function for a few years.

[15:39] Liz: Yeah, I mean, that’s got to be really interesting seeking medical help as a medical doctor yourself. How is that like?

[15:48] Dr. Eleanor Stein: So I actually went to see, I won’t name names, but I went to see someone who was on that CDC committee.

Right? There was one, two Canadians, I think, on the committee. I lived close. I went. She told me I was depressed. So even though this person supposedly knew something about ME, she really didn’t. And I’ve talked to her since then, so, you know, we hang out in the same circle. So a few years ago, I went up to her and I told her what happened and just hope it would make a difference for, you know, people seeing her in the future.

[16:22] Liz: Wow. Uh. I probably confronted one (actually two) of my doctors. I mean, I’m a nobody, I’m not a doctor. So I just didn’t confront some others, just two that seemed to actually care among the probably 20 that I saw. 

And I remember crying to one of them because I would just like look at the test results because they now have more not biomarkers but clues in terms of like my inflammatory markers and things like that.

Dr. Stein: Yeah. 

Liz: Anyway, that’s amazing that you were able to go back to these people and we can talk about that later, but we’re going to go more into your journey and you’ll talk about some of the things you tried along the way because there’s 27 years here. 

In the beginning, there was no hope and you were brushed off as having depression despite these clear multi systemic symptoms.

So what are some crazy things you tried? Did you, how long did it take you to try some of the more out there things along the way? 

[17:29] Dr. Eleanor Stein: In the very beginning I just didn’t have access to anything, right? There was nothing written, there were no conferences, there was no ICanCME. 

The CDC, you know, you might remember back in the 90s was when the British psychiatrists were starting to talk about cognitive behavior therapy and graded exercise, which, of course, I knew exactly what that meant, and I knew it was going to be a disaster, so thankfully, I had enough sense to never try that. 

And again, being a doctor, no one’s going to force you, you know, so I was in a little bit of a privileged position in terms of there’s going to be less pressure on me to try things that I don’t want to try or know are going to be harmful.

So for the first ten years, there just was no help whatsoever.

Dr. Stein: So for the first ten years, there just was no help whatsoever. Well, I guess eight years.

In 1997, I met a doctor, Bev Tompkins, who was in Calgary. Well, I heard about her. I immediately phoned her. I said, “Can I come out to Calgary and sit in and learn from you?” because she was like the first person I had heard of that even would use the words ME, right.

So I did that. She was incredibly generous. I learned, like I just inhaled as much as I could in three weeks. And then seeing patient after patient walk in the door who were sharing exactly, and she also had the illness. I think she’s pretty out, so I don’t think I’m telling any secrets.

Just hearing person after person telling the same story, with the same types of symptoms, using the same adjectives to describe how they’re feeling…that three weeks was so validating.

So I thought, “Oh, okay. I actually have a real thing” because up until then I just thought, “Maybe I’m depressed. Maybe I’m nuts. Maybe I’m faking. Maybe I’m hypochondriacal.” Like when there’s nothing to validate your experience, you just don’t know if it’s legitimate. 

Liz: Wow.

Dr. Eleanor Stein: So that three weeks was really life changing because then I knew for sure I have something it’s called ME/CFS.

And there’s treatment. So she was the one who put me on Florinef. 

Liz: Was that the POTS drug? 

Dr. Eleanor Stein: Yeah, to raise blood pressure. So that changed my life, because then I wasn’t passing out multiple times a day, right? I mean, that was just life changing. And I tried IVs with her. She was experimenting into different supplements.

So, all the mitochondrial supplements I tried. I guess that’s another message, or another learning over my life, 35 years, is we’re all so different. 

So I know for some people, those supplements help for me. They did nothing whatsoever. I’ve probably tried, oh my gosh [thousands]. Then I went, and I worked in Australia for a few years, very part time, but it was an amazing experience.

While I was there, I learned about functional medicine and I went to see some prominent functional medicine physicians in Australia who were in the ME space early on. So I tried, there’s kind of whole protocols, especially for my gut.

I didn’t mention, but I had very, very severe IBS. So going on, I don’t know, is it okay to name names of products? Because I don’t want to be advertising for some company.

I’ll just say I went on Medical Food. If you want to read the names, it’s all in my manual. I named names, but so I went on Medical Food, which is protein and carbohydrates and fat with a whole bunch of minerals and vitamins that made a huge difference. I was pretty much dependent on that product for like five years.

I was in Australia, right? So it would go in pineapple juice because pineapple juice is dirt cheap there. So every day I had two or three times a day (makes a gesture of putting a scoop of something into a drink). And that kept me going. 

I went to see many of the top people. I went to see Dr. Paul Cheney, had all of the cardiac echo testing. 

This is already years ago. Some people today might not be familiar with… so many things have gone through fads.

There were people using adrenal extract because we know that people with me CFS are not depressed. And one of the reasons we know that is because our cortisol levels are abnormal, but in the opposite direction. 

People with depression typically have high cortisol because they’re stressed and people with ME/CFS typically have low cortisol.

Because there’s something wrong with our hormonal axis that leads to the production of cortisol. So, Dr. Cheney had his own take on the adrenal extract, and I call it “buffalo goo,” so it was like the liver and adrenal glands of bison. And unfortunately, it’s hard to prove causality, but somewhere in the several months that I tried that, I ended up with symptoms that I now connect to MCAS. Mass Cell Activation Syndrome.

So I think something about that treatment was just so antigenic, like so foreign to my body that my immune system went on high alert.

So I guess that’s another learning, right, is. I was pretty brave.

I tried a lot of very weird stuff, and some of it has not turned out to be in my favor.

Because I still have MCAS now [she later explains her MCAS symptoms are skin and gut related]. Fourteen years later, I haven’t been able to calm down my immune system. 

So be careful.

[23:03] Liz: Yeah. And the stuff you mentioned isn’t actually weird. It’s like the more normal stuff I would say. I did get adrenal extract, and then there’s, you know, like some Ancestral Foods, now they have little capsules with it and there is a Chinese Medicine and Standard Process (brand).

They have that stuff.  There’s a lot of companies that sell that extract and I think I had tried that too, but yeah, I think for me, it just felt like my body was fried. I know at one point I might have had higher cortisol. I’m not sure, but I know I had it measured, and I think it was lower. So I know some people have disproven adrenal fatigue as a thing, but there’s definitely something wrong with the adrenals, but just amping them might not be the solution either for everyone.

[23:50] Dr. Eleanor Stein: And then the other thing, so more recently, the thing that really caused a big turnaround was for me, I think is really central to my improvement, was going on the what we call the Autoimmune Paleo diet. So it’s a diet that’s recommended by several people in different fields that are dealing with autoimmune diseases.

So it’s recommended, say by Terry Wahls, MD. So she’s a doctor who has MS and has recovered, right? So that’s almost unheard of. She was in a wheelchair and she used the diet. And what’s really cool is she learned about the diet from a father and son who live in Calgary, which is where I live. And I’ve met them because they created a movie, and it was at the Calgary Film Festival a number of years ago.

So I went to the premiere and I met them and talked to them and they run a site. I believe it’s called MS Hope. I hope I have that right. And they give all of the details of the diet. And the father is a retired university professor and the son is the one who had MS. And the father, he’s also researched vitamin D and MS.

So vitamin D may be a really good remedy to try to help people calm the immune system. 

So I take a lot of vitamin D now, and it was these two that created the diet and the son who I met who’s now, I think in his 40s, super healthy, goes to the gym, works out every day. And he was kind of headed for wheelchair territory when he started the diet.

[25:27] Liz: So the Autoimmune Paleo Diet, and I know Terry Wahls’ is very vegetable heavy from her beautiful garden. But that is basically it’s no nuts, no eggs, no dairy, no grains.

Dr. Eleanor Stein: No legumes.

Liz: And so basically it’s having meat.

[25:49] Dr. Eleanor Stein: Yeah, fruit, vegetables, and meat. 

Liz: Yeah. 

Dr. Eleanor Stein: And so it’s easier…

I prefer to say what you can eat than all the things you can’t eat, but basically I eat all fruits, all vegetables, all meat.

[26:03] Liz: Yeah, I actually did that for my own recovery. I have all the food groups today, except gluten, but I was very strict for my recovery. And I would say a full year after I had gotten my health back, I was still on the diet, but I was thankfully able to, you know, through the nervous system work, be able to eat more foods.

But yeah, for me. Same diet was key for me. And do you see that in the people you help or is the diet thing unique for everyone?

[26:37] Dr. Eleanor Stein:  You know what? I’ve been reticent to recommend it. Like when I was still in practice, I didn’t recommend it unless the people had kind of diagnosed autoimmune condition because the diet is so restrictive.

So for example, I don’t eat seeds, but I also don’t eat seed oils. That means I don’t eat any Omega-6 oils like corn oil, canola oil, safflower oil, cottonseed oil, soy oil. That’s a whole other hour long talk of all the pros and cons of those oils. But it means that I’ve had some health side effects from that kind of restricted diet.

And so I just felt like it maybe wasn’t ethical to recommend it as a physician, knowing that there’s really, really healthy foods that are being omitted from the diet. If people had autoimmune diseases, I’ve absolutely recommended it, and it’s helped them incredibly. I would say to anyone listening, if you have an autoimmune condition, I would try it because it could really change your life.

[27:44] Liz: And how would someone get diagnosed with autoimmune?

[27:48] Dr. Eleanor Stein: Yeah, that’s pretty much through the conventional medical system. Like examples of autoimmune diseases would be Hashimoto’s thyroiditis, celiac disease, rheumatoid arthritis, lupus, scleroderma, Sjogren’s, dermatomyositis. There’s literally hundreds of them.

Most of them have to do with inflammation.

Liz: And which one did you have?

Dr. Eleanor Stein: I have a condition that the etiology isn’t clear. It would be far too easy to have something that with a clear diagnosis. So I have something called generalized granuloma annulare, which is like a body wide rash, except for luckily my face.

And it’s not clear whether it’s autoimmune, but it’s very clear that it’s immune. And my MCAS symptoms. So it’s very clear that my immune system is ramped up and this diet just makes a massive difference. And if I go off it, which of course I do from time to time, partially on purpose because I want to eat some of the foods that I’m missing like I want to get some of that nutrition to prevent side effects. 

And sometimes I just need to eat chocolate cake for emotional reasons.

So when I go off it, sure enough, two to three weeks later, my rash goes berserk. And then it’s a month to get it back in check.

[29:11] Liz: Interesting. Yeah, I didn’t have chocolate [during ME/CFS].

I just had a piece of chocolate before our chat, and I didn’t have chocolate for four years. And I would finish off like a full thing of dark chocolate every day before that [before ME/CFS]. Well, I would share my now husband.

[29:27] Dr. Eleanor Stein: I’ve improved. I’m not as strict as I was. I have little cheats. But if I ate a normal diet, yeah, wouldn’t work for me.

[29:36] Liz: Yeah. Thanks for sharing the specifics. And yeah, it’s not the most fun thing, but you know, I made it work and I was down to like three foods at one point, but I like how you said it’s focusing on what you can eat. Yeah.

Liz: Okay. So you had mentioned something about Lyme when we messaged earlier. 

Dr. Eleanor Stein: Oh, yes. 

Liz: So when were you diagnosed with Lyme?

[30:02] Dr. Eleanor Stein: That was in 2004. So, I’ll just back up a step. So, people with ME tend to fall into two camps. Their immune system is either over or under active. Or effective, right? So if your immune system is very active as mine is, like I’ve almost never gotten a cold or flu in 35 years since I became ill. And then the other half of people catch everything and are super sick with it, more so than the average person.

So that’s what I found. People fall into kind of polarized groups. In 2004, I had this really severe, acute flu-like illness. Like I had never had anything like that. I luckily got in to see this internist who was super knowledgeable, he immediately tested me for Lyme, and I was like raging positive.

Again, because I’m a physician, and I had this guy kind of in my corner, I actually did get a trial of IV antibiotics for three months. Made no difference whatsoever, so I stopped it. 

And I’ve tested for Lyme subsequent to that, and it just kind of has gradually become less on the lab tests. 

Liz: Interesting.

Dr. Eleanor Stein: Yeah, it’s very weird. 

So that’s helped me change my mindset a little bit about Lyme also to realize that sometimes if we look after ourselves and we do all the self management stuff, our body may be able to heal ourselves from Lyme, because I’m pretty sure I don’t have it now. 

Some people might say, MCAS, that means you have Lyme, you know, it’s pretty complicated, but I definitely don’t have the classic symptoms of Lyme.

[31:45] Liz: Yeah, and I had a similar thing, but it was with EBV, kept on reactivating, reactivating, reactivating, even took an 11-month course of Valtrex, which is off-label herpes medicine, but EBV is in the same family as herpes. 

Dr. Eleanor Stein: Yeah. 

Liz: So I took that for 11 months and then it still came back. And so it was the lifestyle and nervous system stuff for me that ultimately helped my body.

Like you said, taking care of myself in the right way is was what returned me to homeostasis.

Liz: So yeah, we talked about all this stuff. So how much money did you probably spend in total? Give us a number, make people.

[32:31] Dr. Eleanor Stein: I’m really too scared to do the math, but I’ve kept a spreadsheet because I have a business, and I started a health spending account for my business for me and my employees.

So I actually could come up with an exact number. I mean, I’m gonna guess like $300,000 to $400,000.

Because if I spend, I’m sure $10,000 a year, when you look at the cost of testing. We were just talking about supplements, but I mean, so many tests I’ve had, you know, liver tests and gut tests, looking for parasites and digestion tests and gut barrier tests and special MRIs for brain health.

And oh my gosh, all the Lyme tests and the metabolomics, like the urine tests for all the energy metabolites, and yeah, so tests were probably at least half of the money I’ve spent. And then traveling, some of these healthcare professionals charge $10,000. For a consult. Not to mention any names.

So I just thought, you know what, I was too sick to say get married and have kids. So I made that choice in my 20s.

And I thought, what am I going to do with my money if I’m not healthy. So I’ve really been pretty liberal with just trying as much as I can.

[33:54] Liz: Yes, and you are not alone. Wow, did any test, I guess, knowing helped you, but in terms of like all the gut tests, let’s say, did any of those lead to anything?

Because it’s like, testing your gut lining…

[34:10] Dr. Eleanor Stein:

Oh, like almost everything, I tested. And here we’re talking in the environmental functional medicine complimentary space. 

I had findings on almost everything. My body was a mess.

So yeah, my digestion and gut permeability, like I had leaky gut. Guess what? I’ve got the genes that make you super susceptible to mold. So I was super sensitive to mold for a really long time. I don’t think I am now. 

That’s another thing that has gotten, I would say like 99 percent better and has stayed better is all my environmental sensitivities, so I feel incredibly fortunate because that was so restricting on just everyday life.

I’ve had the Shoemaker protocol. Like I would think twice about every single place I went and who I was going to go with.

[35:04] Liz: So what do you recommend other people to do all these same tests because it sounds like it created more stress for you. The Shoemaker Protocol is no joke, and I’ve heard people committing suicide from just the sheer extremeness of it. 

And they put the fear of God in you, if you’re exposed to any type of chemical or mold. But I know there’s some truth in it as well. 

Like these things, especially if you’re genetically susceptible, where our nervous system is haywire, that you don’t want to be in a moldy house, for instance. 

I moved out of my moldy house and that was a game changer, but I also didn’t want to live a life walking on eggshells either.

[35:51] Dr. Eleanor Stein: You know, you’ve just put it so well, Liz, trying to find the… I don’t know if I have an answer to that because if I said, forget the tests, focus on self management because self management is key.

What I’ve learned from my own experiences apart from Florinef and apart from sleeping medication, which I still have in my emergency thing next to my bed…

Nothing has really been a game changer in terms of all the supplements and drugs that I’ve tried. And some have made me worse. 

Like I have some kidney damage now because of something that I tried for MCAS, you know, so you got to be cautious. Like don’t do what I did.

Because doctors never tell you the side effects, this side effect was never told to me.

[36:37] Liz: My doctor wanted me to go on a, it said “nephrotoxic,” which is damaging to your kidneys, on the label.

And I was like, my kidneys have been to hell and back with living in the moldy house and the CFS and all the other stuff. And she wanted to give me these antibiotics specifically for SIBO and I read on it, “nephrotoxic,” and I just couldn’t get myself [to take it]. I took the other one. There were two drugs that she gave me this protocol.

I took one of them, but the one that said damaging to kidneys, I was like, “I don’t think so.” Yeah.

[37:12] Dr. Eleanor Stein: And even as a physician, I guess I didn’t read the fine print or it wasn’t even in the fine print. I would say throughout my career and from my personal experience, I try to find the middle ground, like get out of a moldy house.

If you have Lyme, try some treatment, at least one round, right? Because you just never know, you know, I’ve had patients with HHV-6, for example, who have gotten dramatically better with antivirals. So, I can’t say don’t try it, but then again, you know, Valcyte is very toxic and probably some people have had very bad consequences from that.

There’s no rule of thumb, we’re all so different and our vulnerability and our resilience to trying all these treatments. Like, I used to think I was tough, so I was very cavalier. I’m like, “Sure, I’ll try this, I’ll try anything.”

But I’m much more cautious now because I’ve had some adverse consequences.

[38:07] Liz: Yeah, it’s so interesting and we’ll talk about your path out right after this, but it’s so interesting that when I’m looking online, I see people now… Long Covid, is what’s happening right now. People with ME/CFS symptoms that were triggered by COVID. That’s what I’m talking about. Not just the specific COVID things like loss of taste or smell.

Rather, the neuroimmune symptoms. And I see them, and they’re like, “What’s the next drug, the next this?” I’m like, “Oh I was you once.”

[38:40] Dr. Eleanor Stein: I remember so for example in Long Covid everybody’s all into the micro-clots. I remember going to a conference about that in 2002 when people were using that in ME/CFS. 

That’s one thing I never tried [blood thinners] because I just thought, “No, that’s way too risky.”

My blood already doesn’t clot great. So kind of like you, I just used my intuition and thought, no, I’m not going to try that.

[39:06] Liz: Yeah, I probably…so for my heart, I actually was on a baby aspirin a day. And of course I self-diagnosed before I got the CFS diagnosis, and I “found out” [from Dr. Google] that I have a leaky gut. And then I went into my doctor, she was like, “There’s no such thing as a leaky gut.” Like I had told her there was a Loch Ness monster or something. 

And I was like, “This is what I have.” But I don’t know how that stuff is [blood thinners] for the gut lining either. 

Because it’s like, well, if we do this [take heavy duty blood thinners], then is that going to be good for the gut lining? So you never know. 

[39:38] Dr. Eleanor Stein: If I can just jump in because you just talking about leaky gut is just a perfect example of how fads come and go and how scientific knowledge evolves.

So 35 years ago, when I first started learning about leaky gut, it was a thing. 

In Calgary, you could go to the hospital and get a test. And then all of a sudden it was discredited and it wasn’t a thing and I would refer patients and the referral would come back saying they don’t do the tests anymore because it doesn’t exist.

And that went on for 10 or 15 years. And now, I mean, the research around leaky gut is ironclad, right? 

There’s thousands of papers, super scientific. They know exactly what’s going on at the microcellular level. 

So it just goes to show like, just because people are really confident that we know what’s going on, doesn’t mean it’s true.

[40:30] Liz: Interesting. Yes. The fads. And it really depends on when your doctor went to medical school. Yeah. What they were taught that year or those years. All right, great.

Liz: So. Anyway, along the way, before you had your major epiphany, were there any minor little epiphanies leading up to the epiphany you had in 2017?

[40:52] Dr. Eleanor Stein: I would say one of my favorite tools throughout the last 25 years has been my sauna. So even though it’s not curing anything. But I feel like each time I do a sauna, a few more toxins….you know, I got my sauna because of my MCS and mold exposures and all of that stuff. And I’ve got heavy metal issues. We haven’t even touched on that.

So every time, I still do it frequently, and every time I do a sauna, I just feel like it’s one little thing moving me back on that healing journey and away from, you know, headed to bad health path.

[41:28] Liz: I love my sauna.

[41:30] Dr. Eleanor Stein: I love my sauna.

[41:31] Liz: We have one in my home, but when I was on my upward trajectory, I used it like five days a week.

There was a local tanning salon. This was before the pandemic, the year before the pandemic. And I loved the sauna. Even though I have a heart condition, my heart doesn’t seem to mind it. I didn’t do a super high temperature and I eased into it for sure. And I stayed hydrated. You really have to stay hydrated.

Make sure you have enough electrolytes as well. But I loved my sauna. So that’s one thing I did. [I now have one in my new home, though use it less often.]

[42:01] Dr. Eleanor Stein: So I’ve always taken some gut supplements like glutamine. I’ve always taken glutamine, butyrate, stuff like that, just because I think the gut is so critical. So I want to do whatever I can to keep its health prominent. 

[42:24] Liz: I took that one, too, (L-Glutamine), but then someone I know said glutamate sensitivity is what caused his ME/CFS? Are glutamine and glutamate…?

[42:27] Dr. Eleanor Stein: Glutamine and glutamate are different.

[42:29] Liz: Oh, they’re different. Okay. Thank you for clearing that up because I was like, I took the L-glutamine during my journey and I thought it was helpful, but I don’t know if it was or not, but I thought it was. 

And then someone was talking about glutamate sensitivity, and I was like, what? Was I harming myself?

So those are two different things.

[42:48] Dr. Eleanor Stein: Glutamine and glutamate convert to each other, but glutamine is the favorite food of the gut cells, the colonocytes that line our bowel. So by giving them their favorite food, you’re just helping them be healthier. All right.

[43:04] Liz: So now can you take me to 2017 and the paradigm shift you had?

[43:12] Dr. Eleanor Stein: Yeah. Well, there was a few things that happened. So in 2014, I did a neuroplasticity training, and I very quickly, like literally within the first week of practice, my chemical sensitivity got dramatically better. And it was something I had had my entire life, like even as a child before I became ill. And both my parents were super chemically sensitive and I’ve got horrible detox genes.

I’ve got all the genetic vulnerabilities for it. And this is what’s really interesting. 

So I did neuroplasticity. It got better. I still have the same genes. 

And so that was a paradigm shift because I’m like, “Aha, just because I have genes that make me vulnerable to certain conditions doesn’t mean I have to live with those conditions.”

Right? I still have the genes, I’m no longer sensitive, I can go anywhere I want. And that was really life changing. And then in, I read Dr. Norman Doidge’s book in 2015, his second book, and he talks about red light therapy. 

And when I read it in his book, I thought, this is woo woo, like, are you kidding me? Shining a light somewhere on my body is going to make any difference? 

But of course, I went to the back of the book, I read all of the references. And you know, the science is legitimate, right? It’s really strong. The red light is absorbed by our body. It gives energy to the mitochondria so they can produce more ATP.

So it’s like free energy. So I went and I did the training and I bought a red light and laser system and I started using it most days and I think it made a difference.

[44:49] Liz: So, I’ve seen advertisements for them, it kind of looks like a light panel, but you said a laser. So, what was your set up? 

[44:58] Dr. Eleanor Stein: Yeah, so, there’s so many different brands, like it’s so trendy right now.

So I went to the place that Doidge talks about in his book, which happens to be in Toronto, and it’s probably one of the most expensive because it’s professional grade. So I have a system because then I used it in my patients, right, for the next like five years. 

And I actually did a little study. So I hired a research assistant and we entered 20 people and we gave them all the exact same protocol and we got them to rate their symptoms every week for a month, and most people had an improvement in energy, mood, pain, and sleep. 

So those are all four really important things. So I’m a believer. 

That’s another paradigm shift. Like I never thought that something you could shine at yourself from the outside could make any difference whatsoever.

[45:50] Liz: Yeah, that’s such a coincidence because I was talking to someone, sometimes I respond to people who message me, and I was like, “Have you heard about red light therapy?” [Because someone else had just been telling me about it.] And just curious if he had heard about it. And he was like, “No,” but it seems I just have only read positive things about it. It really seems quite promising.

Is that the same as infrared light or is it different? Are they?

[46:16] Dr. Eleanor Stein: Yeah, so most of the arrays use red and infrared. There’s a spectrum, right? I can’t remember the exact numbers but it’s like from 780 to 930 hertz, something like that. So it’s certain frequencies of light and it’s very specific and scientific.

It has to be just the right frequencies so that it won’t be absorbed by the wrong tissues. So, for example, we don’t want it to be absorbed by the red blood cells, so we use the same frequencies that are in the red blood cells, and then it doesn’t get absorbed, and it actually gets into the rest of the tissues.

[46:56] Liz: Wow. Thank you for explaining that. I had no idea how it actually worked, but thanks for that explanation. All right. So the sauna was helpful. Yeah. Red light therapy was helpful. 

[47:08] Dr. Eleanor Stein: And then neuroplasticity training was a big step forward. It helped me with my sensitivities. It did not help at all with energy.

And I was super envious because all the people that went to the course with me who I was still in touch with and practicing with their energy was getting better and mine wasn’t budging. And so three years later, because I did that in 2014. 

Three years later, I went on the diet. And I think maybe the combination of everything, right?

First of all, I’ve been doing really healthy stuff for 27 years. I am practicing neuroplasticity now every day. I’m using the red light therapy. I’m using the sauna. Like, I kind of think it’s like layers. 

And when you finally give your body enough of what it needs, what Dr. Naviaux refers to as the healing cycle, it finally goes, “Oh, I get it. We can wake up again. We have enough nutrients, enough energy.” 

You know, when he talks about the cell danger response, it’s a protective mechanism to save us from oxidative damage and the mitochondria aren’t going to start producing more energy until they sense safety. 

So I’ve kind of developed this paradigm. Like, people talk about in neuroplasticity, how you have to feel safe for the brain to rewire, otherwise you’re just going to be focused on the danger and nothing’s going to change. 

So I think it’s kind of almost a metaphor, we have to feel emotionally safe, but our cells like the mitochondria are actually sensing what’s going on in the cell and they make the decision to turn on or off based on what they sense inside the cell in the intracellular environment.

I feel like all the careful self management we’re doing, addressing emotional needs, physical needs, pacing energy, getting enough sleep, eating the right diet for us, which might be different for someone else. 

When for me, I finally layered all those things, and it was basically between mid August and mid September of 2017, everything changed.

I, all of a sudden, didn’t need to go to bed at, like, 8 o’clock and wake up at 10. Now I’m going to bed at 10 and waking up at 8. Like, wow, that’s four extra hours in the day. I could walk. 

My post exertional malaise went away. And I can’t run a marathon. I can’t do probably the most extreme things, but I can do a 10 to 15k hike.

[49:47] Liz: Wow.

[49:48] Dr. Eleanor Stein: And feel pretty good.

[49:51] Liz: So if you could just give us a percentage of what your functionality levels were like during your ME/CFS journey and what percent wellness you are at today?

[50:00] Dr. Eleanor Stein: I was pretty low, but you know, then I improved.

So once I met Dr. Tompkins and I got on Florinef and sleeping medication, and I got a little bit stabilized, then I was kind of hovering around 60% for most of that, say 20 years or whatever.

And I was doing stuff, I was just doing it super slowly and mostly feeling like crap. But I was still working part time. Thinking slowly and painfully, but I was doing stuff. So I would say I was about 50 to 60 for much of that time. 

[50:36] Liz: And now you are at around 90, you said?

[50:40] Dr. Eleanor Stein: I think so. You know, it’s so hard to tell because I’m 35 years older. And now I have a few other new health issues that I didn’t have before that I don’t know are necessarily related, but they still impact my function.

So I could not say I’m 100%, but I would say 80 to 90%.

[51:03] Liz: Well that’s wonderful. And I love what you talk about, like the layers of health. And just like the cell danger response, which is on and shuts things down, which is a theory by Bob Naviaux at UCSD. We can have like the healing cycle and the different ways that we can tell our mitochondria we’re safe, whether that’s through diet, through neuroplasticity, through the lifestyle changes.

All right, so at one point you struggled walking to your grocery store two blocks away. Can you talk about your life now and any adventures?

[51:46] Dr. Eleanor Stein: Well, I feel incredibly fortunate. I retired from work last year, and part of the reason I made that decision is so that I have more time for travel, which I adore.

So this year I went to Antarctica. I went to the South Pole, and I went to the Arctic. So I actually dipped my toe in both the Antarctic Ocean and the Arctic Ocean this year.

[52:14] Liz: Oh wow! Oh, how exciting. That’s amazing. Did you see lots of penguins in Antarctica? 

[52:19] Dr. Eleanor Stein: Oh my gosh, like thousands, like tens of thousands of penguins and thousands of different species of seals and albatross and all kinds of seabirds and whales.

But it’s an example of what my life is like now. Like, that’s a very tough trip. It’s It takes four flights to get from Calgary to Ushuaia, the southern tip of Argentina, and then the Antarctic Ocean is very rough. So, you know, it’s not for the faint of heart, and I couldn’t have even considered doing it before, but if I had somehow landed up there, I would have been pretty miserable.

And I was able to fully enjoy myself.

 

Top photo: In the Arctic. Bottom photo: Antarctic, Fortuna Bay penguin colony.

[53:01] Liz: That’s amazing that you were able to do such an epic adventure. Wow. How awesome.

[53:01] Liz: One thing I do want to ask, I spoke with some people before who, when they have any type of pressure or protocols or like, “Okay, I have to go on this diet. Then I have to do all these sleep hygiene practices, and I have to do this…”

It can feel like a lot to them, especially if in the back of their mind, maybe they were told by a doctor, “Oh, you can never heal from this.”

So have you ever experienced people who feel a lot of pressure to do all this stuff perfectly to heal? When in the back of their mind, they were told “You can’t.”

[53:47] Dr. Eleanor Stein: Oh, absolutely. Yeah, that’s really well put. Yes, absolutely. And part of, you know, what hopefully I communicated as a physician is, you know what, let’s go for the middle road. 

If you spend your entire life on, I’ll call them health behaviors, life is no fun.

So what’s the point of living, right? You want to have some fun.

I’m not the most disciplined person in the world, so I was never one of those, extreme, having to do everything right in every protocol people. I tried a lot of protocols. I probably didn’t do them all perfectly.

Yeah, so absolutely. I think I’ve learned so much about mindset and actually my blog that’s coming out early December is going to be all about mindset and some of the research is mind blowing.

And it just shows the power of our unconscious beliefs. And so why I’m writing a blog on it, and I feel it’s so important is if I have the unconscious belief, I might not even be aware of it. Or I might just think it’s true, right? So I don’t think it’s a belief. I just think it’s true that I can never get better no matter what I do.

There’s this sense of futility. And that has to affect my biology, my body.

And what I’ve noticed so you’re asking about paradigm shifts once I had that very significant improvement of like 30 to 40 percent energy improvement so quickly and I’ve maintained it now for six years I totally changed the narrative that I was giving to my patients and they started improving.

Right, everybody at their own pace, some people a little bit, some people medium, some people very dramatic improvements. And in my medical practice for the 25 years before that, I hadn’t seen, of course, some people were making little improvements, but I just didn’t see the number or extent of improvement that I’ve seen since I started providing different information.

And so that’s one of my motivations now. You know, even though I’m retired from medical practice, kind of keeping an online presence is to say “it is possible.”

There is hope you can get better. I don’t know how any individual is going to get better, like what are going to be the layers for them.

But I know that knowing it’s possible is a critical ingredient.

[56:19] Liz: Wow, and thank you for so eloquently describing or even describing it all from a biological perspective and a medical perspective and your own perspective as both someone who’s experienced ME/CFS and someone who helps people with ME CFS heal about how futility can impact our biology.

[56:46] Dr. Eleanor Stein: So just, just a one sentence example.

They did a study on older people and people who thought aging was going to be horrible died sooner than people who thought, you know, had a less negative view of aging. Like something that simple was a life or death mindset.

[57:06] Liz: Wow. Yeah. And I know there’s plenty of examples.

I do want to loop back quickly.

So in the 90s, you know, it was like CBT and just things like that, and there still is a lot of pushback in certain communities, which any type of mindset stuff is patient blaming and it’s minimizing, saying this is a biomedical disease. 

I support all the biomedical research. But it’s clear that some organizations have drawn a line in the sand and said that this is just gaslighting and woo woo, and we just need to work on the pharmaceuticals here.

[57:52] Dr. Eleanor Stein: That’s really why I’m writing my blog so by the time people listen to this. The blog will already be published, hopefully first week in December. So I just say go read it. Try to keep an open mind. I give data from four different studies by three different authors that show how our unconscious belief about something changes aspects of biology we couldn’t possibly control.

Like hormone levels, for example, or cortisol levels. So that for me, I’m reading this going, “this is crazy.” Like  I’ve just read these papers in the last year and I’m kind of going, “Wow.” 

Cause I’m pretty hardcore. I guess that’s another paradigm shift for me. I’ve been hardcore biomedical my entire career.

I’ve spent countless hundreds of hours writing letters to the editor against CBT and GET and just spending a lot of time and energy. And what I now think is just kind of pointless, pointless fighting, because you’re never going to change those people’s minds. And so now I’m trying to spend my time and energy on the messages that I want people to hear, right?

Instead of trying to argue against. Like, you’re just giving more oxygen when you argue against something.

[59:17] Liz: That was a powerful shift I had, too, focusing on what’s good rather than against what’s wrong. So we know just run of the mill CBT and graded exercise is going to cause setbacks for 80 percent of people or more.

Dr. Eleanor Stein: If not more. 

Liz: Yeah. But focusing on what does work, and that’s literally why I’m here, why we’re talking today, because it’s like, let’s talk about what does work from survivors of this terrible condition.

[59:54] Dr. Eleanor Stein:

And the recovery stories don’t in any way invalidate the biomedical reality.

And you know one of the leading mindset researchers, her name is Dr. Alia Crum, She’s at Stanford. Her research is really high quality and what she says in an interview, and I have the link to it in my blog so you know everyone can easily access it, is mindset and biology work together. It’s not an either or. 

They’re both important. 

So you have to address the biology, you have to get enough sleep, you have to pace, you have to medically address, like for me, I’ll probably be on Florinef for the rest of my life.

I’m 60, my blood pressure is still like 90 over 50 if I don’t take Florinef. So if I didn’t  address my biology, I wouldn’t be sitting here talking to you, I’d be lying down resting, right? Because it’s in the afternoon and my blood pressure would be tanking. 

So biology is real. Mindset is also real.

And if we can align the two together, I think we have a better chance of activating the healing cycle.

[01:01:08]

Liz: So powerfully and well stated Dr. Stein. Whoo. I am so glad we did this interview.

[1:01:08] Liz: I am so glad we did this interview. So I, as you know, have a programs guide of the different lifestyle and nervous system regulation programs that I put together with the wonderful Lindsay Vine.

She’s also a nice Canadian like you. And we put together a guide analyzing, I think 27 different programs. And you have two programs that are now in our guide. 

And can you talk a little bit about your two programs. I know you have the lifestyle program, Pathways to Improvement, and then you have your brain retraining program, Healing Through Neuroplasticity.

Can you just share a little bit about how those came to be or just summarizing those?

[1:02:02] Dr. Eleanor Stein: Yeah, I just want to say the guide is amazing. So I’ve read it, each version and it’s really, I think it’s just an invaluable tool like if when I was first sick I had a guide like that could have saved me 20 years, I’m pretty sure.

So thank you for all of the work that went into that. 

So I call it my foundational program, Pathways to Improvement, is basically teaching people all of the self management tools that I painfully, slowly learned over, say, the first 20 years of my illness journey. It’s fairly basic, so some people who are already really knowledgeable might not be the best fit.  

But it’s divided into nine modules. So the first one is kind of a bonus module, all about mindset and the vagus nerve and just trying to give people some of the tools up front to get them on the right track. 

The next ‘pathway’ is called the Biology of Change. So that’s where I’m trying to show how, what we do in self management, like diet, activity, sleep, et cetera, changes our biology through neuroplasticity, through epigenetics, and through the microbiome. 

I just chose those three because there’s just, you know, masses of research. So the reason I started the course with that is because so many people think self management is not a powerful intervention.

And I’ve been doing nothing but reading on this kind of for the last five years and for most chronic conditions. Self-management is the most effective tool bar none, and the impact on biology is massive. Massive.

And that’s acknowledged by leaders in the field. You know, if you listen to Andrew Huberman’s podcast or Peter Attia’s podcast. So these are really smart, scientific, high-powered people. And they’re constantly saying self management is more powerful than medication. 

I just want to set people up for that saying it really is worth reading and watching the rest of the course because these tools, they might seem simple, but they have profound impacts on our biology.

So I just review diagnosis so that people can figure out what they’ve got. 

And then how to improve sleep, how to pace, different types of diets, how to manage stress, how to manage pain, how to minimize exposure to toxins, and then how to cope with all the emotional issues that come with being chronically ill.

They’re short videos, but altogether about an hour of video instruction for each, I call them “pathways,” and there’s a ton of resources. So, what most people do is they go through it once, they watch the videos, they read my manual. Which provides a whole bunch of the references and the actual tools like here’s the drugs, here’s the supplements for each of these topics.

And then a lot of people take a break and then they come back to it again and dig deeper and go into all of the online resources that just provide, I would say, maybe the supporting or deeper content. 

And I’ve just launched this year live mentor led sessions to provide that extra layer of support because so many people learn better in a group with someone who knows what’s going on. [Note: The live mentor group support option is an optional add-on, available only at select times.]

And my mentors are people who have taken my courses have gotten significantly better are super familiar with the content and have some great facilitation skills.

[01:05:46] Liz: Awesome that you provide both your insights and also extensive research and also linked resources and then also the group support. That’s wonderful. 

[01:06:01] Dr. Eleanor Stein: And all my courses have a community [online forum], so although it’s self-study, you’re kind of on your own [if you don’t also sign up for the live group mentorship], there’s a moderator and a live community where you can post comments and questions, and like, right now, today, we’ve got an active discussion going on, believe it or not, on sauna use, so that’s just an example, right? 

Someone’s like, have you tried it? Does it work? Other people are saying, “Yes, I did, but you gotta take electrolytes and fluids,” so everything that you said is being discussed in the community today.

[01:06:31] Liz: Oh, that’s so wonderful. Oh, that’s amazing what you’ve built. And I just want to say, so Lindsay and I reviewed the different programs, and your program. Well, there’s a couple others who really incorporate the science explanations, too, but your program really goes deep.

So if you are an analytical person or just like to have that scientific background, this might be the program for you because it really goes into building that belief and explaining it so you know, you’re on the right path. Wow. I didn’t even intend to say that [the path pun as her course is ‘Pathways to Improvement]. 

Yeah. So can you talk about Healing through Neuroplasticity? [Her other course.]

[01:07:11] Dr. Eleanor Stein: Yeah. So Healing through Neuroplasticity is based on about 10 years of learning and experience. So I started in 2014 when I had my own, you know, pretty big shift through neuroplasticity and I had read [Norman] Doidge’s book and then I went and read like all the books that he recommends, and the papers that he references. 

And I went, “Okay, you know, there’s something to this” because up until then… so another paradigm shift, I had been super skeptical.

Like I had heard about some of the neuroplasticity programs for several years before I was willing to try it because again, I felt like it was invalidating of the biomedical.

I was very much – I won’t say very much – I was somewhat polarized myself in that way, and it’s only been through my own experience that I realized, you know what, both sides have a lot of validity.

So I started offering groups in my medical practice to fine tune what works, what doesn’t work, and I’ve come up with my own program. 

Which I’m gonna call agnostic, meaning, like some of the other programs I’ve encountered have a very narrow scope and kind of a script, like you have to do it this way, and it’s all about this or that brain process, and I think I’ve pulled back on that, and I’m just saying, you know what:

Here’s how the brain works, here’s the science of neuroplasticity, and based on that science, we can predict that certain interventions are going to be helpful.

So again, I don’t know why the magic number is nine, but I have nine modules in that course as well, each one teaching different skills, very practical and actionable that you can practice every day, because just like in the pathways course, unless you actually implement the self management, nothing’s going to change, right?

You can understand it, and be an expert on it. But if you don’t do it, nothing’s going to change in your health. And it’s the same with neuroplasticity. 

You have to practice an hour a day to rewire the brain. 

So I give you literally handouts with dozens of tools that you can choose and figure out which ones work for you.

So some of the programs give you a script. I do not have a script. So if you’re someone who really just wants to be told what to do, don’t buy my course because you’ll be frustrated.

Mine is more for people who want to kind of use their intuition and figure out, “Oh, this tool really appeals to me. This one makes sense, I’m going to try it. This one doesn’t apply to me. I’m going to let that one go.”

And build their own toolkit that they can then have tools that they can use every day, you know, the good days, the bad days, the morning, the noon, the night, the middle of the night when the symptoms are out of control. 

So it’s basically helping people build their own individualized toolkit that they can then embark on that daily practice with, again, the support of the community so they can find accountability buddies or practice buddies within the community.

[01:10:22] Liz: Oh, that’s so wonderful. 

I do have a question. So the hour a day. So is that spread out throughout the day you recommend? Some programs are very rigid an hour a day and there’s some other programs it’s like you just can do whatever, 20 minutes.

[01:10:38] Dr. Eleanor Stein: I’m not a rigid person right I’ve already shared, I’m not the most disciplined person, and I really hate people telling me what to do.

So my programs reflect my personality that you get a lot of choices. You have to work about an hour a day for the brain to rewire, because it’s been in certain patterns or habits for maybe decades. 

In my case, I was sick for 27 years before I got better. That’s a lot of entrenched habits to undo and change.

I think it probably works better if you split that hour up because I think it’s better to have change on your mind throughout the day. So if you did 10 minutes in the morning, 10 minutes whenever, you know, I have scheduled practice and unscheduled. Scheduled practice would be like the morning meditation or the evening meditation.

Unscheduled would be what you do in the moment when you’re beset by the symptom. And you can’t predict when that’s going to be. And you don’t necessarily have an hour right there and then to launch into a practice. So it’s extremely flexible as long as you aim for that more or less hour a day on average.

[01:11:57] Liz: Well, I love that. Yeah. So it’s both scheduled and situational. Yeah. And picking the tools that resonate and apply to the situation. And also, I get this [question from people] a lot, like, “What do I do when all those wired chemicals wake me up at night and you’re just tuck in that stress response that night?”

[01:12:19] Dr. Eleanor Stein: So that’s going to be very different, right?

I’ve got two whole modules on safety and calming and all kinds of strategies. On a different note, you might have a different symptom in a different situation where you’re not in fight or flight and a very different intervention might be more appropriate. 

So there’s pros and cons to my approach. The pro is I think it really appeals to people who want a really individualized approach. 

That they can tailor to their own personality and symptoms and life situation.

But I’m very aware, because I’ve had this feedback over the years that some people, they’re so sick, they’re so tired, they have such limited, say, cognitive capacity, they just want something really simple. 

And I’m working on a new course [coming in 2024], which is going to be much simpler, but my current course probably wouldn’t be right for those people.

[01:13:12]

Liz: That’s very good to know. All right. I’m so glad we could talk about your programs and just hearing from a doctor, wow, your own story.

Liz: And do you want to touch on how you’re maybe changing things in Canada or how you’re working [to change things]?

[01:13:31] Dr. Eleanor Stein: Yeah, it’s pretty exciting. 

You know, my entire career pretty much since I came back from Australia in 2000, I’ve been devoting time to advocacy behind the scenes in the medical community. 

So giving talks at conferences to my colleagues. Lobbying my local university to get on the medical school curriculum so University of Calgary was probably the first university in Canada to have a devoted one hour.

Okay, so let’s not go crazy [mutual laughter], but one hour on ME/CFS.

And now that I’ve retired, I’m not sure if that hour is still there, I doubt it. So, unfortunately, it was very fragile. But what it did mean is, because I gave so many presentations, I would say the culture in Calgary is very, very open to ME/CFS and FM (fibromyalgia). 

You know, one of the reasons I retired is because I couldn’t handle the demand, right. Because I’m a specialist, all patients came to me through referrals from other physicians. So I feel really proud of that. I feel like we have a little nucleus in Calgary of physicians that are pretty knowledgeable and open minded compared to maybe other locations and stories I hear. 

And I’ll maybe put this out there and you can include it or not as you wish, but I want to continue supporting my colleagues because I feel like unless healthcare professionals have a way to access accurate information.

They’re not going to be able to help patients, because it’s still not being taught in most places. So I have a group called Alphabet Soup, which is only for healthcare professionals. 

If any healthcare professional is listening or you would like your healthcare professional, you think they’re open minded and they might be open to learning, contact me.

I’m sure my email will be somewhere displayed, and we’ll send you the link. So it’s not a public link because it’s only for healthcare professionals, but I provide just short little lunch and learn online talks. I’ve got three up there. I’ve got another one happening next week, and I’m just going to keep building that library of education for professionals.

[Note: Dr. Stein’s email is located in the Description of our YouTube chat.]

[01:15:43] Liz: Wow, that’s so wonderful. Yes. And it’s so wonderful that you’re changing things in Canada and with the internet, getting your story out there. And I’ve known you spoken at conferences, and I’ve seen you at the big conferences like for Long Covid and things like that. 

And sometimes you’re one of the only messages of hope, because a lot of the conferences it’s like just talking about the research, but you’re talking about how now we can actually heal and improve.

Liz: This was so wonderful. So do you have any final message to people watching today?

[01:16:21] Dr. Eleanor Stein: I think that there is hope, that we’re all individuals, so your path may be totally different than mine, totally different than Liz’s.

You know, I’ve listened to a few of the recovery stories, Liz, on your channel, and they’re all different.

And so I kind of love that. And I would say to anyone listening, listen or watch those recovery stories because everyone is different. And if you watch enough, you’re going to come across one that you can really relate to.

And once you know it’s possible, that changes your biology and makes recovery more likely.

[01:16:59] Liz: Wow. Oh, that gave me the tingles. Thank you so much, Dr. Stein.

This was such an educational and informative and an inspirational interview. One of my favorites so far. I feel like I learned a lot and just hearing all about the history of this was just pretty enlightening.

And I just really thank you for your time and what you’re doing, giving back and really paving the path for so many people on, I would say, a road you trailblazed. So thank you so much, Dr. Stein. I really appreciate it.

[01:17:37] Dr. Eleanor Stein: Oh, thank you, Liz. And thanks for the opportunity.

[01:17:41] Liz: All right. This was so great. Have a wonderful rest of your evening.

[01:17:43] Dr. Eleanor Stein: Thank you so much.

Liz: Okay. Take care.

Dr. Eleanor Stein: Thank you. Bye.

Liz: Bye.

1. Free Download from Dr. Eleanor Stein: 7 Surprisingly Simple Steps to Live with Less Pain (she made this specially for my readers/subscribers).

2. Dr. Norman Doidge’s book: The Brain That Change Itself

3. Dr. Eleanor Stein’s website.

4. Dr. Eleanor Stein’s Instagram.

5. Dr. Eleanor Stein’s Lifestyle & Pacing course for ME/CFS: Pathways to Improvement self-study course (also for fibromyalgia, environmental sensitivities, and Long Covid)

6. Dr. Eleanor Stein’s Healing through Neuroplasticity self-study course for pain (also applicable to environmental sensitivities and ME/CFS).

If you’d like practical and uplifting health recovery information, please sign up for our newsletter below. This blog is not medical advice nor meant to contradict what you have discovered yourself to be true. 

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