[01:07:28]  JY — I want to see more dietary things. I want to see more botanical options. Can you take these botanicals and reduce your symptoms by 50%? That would be a huge thing. What else is possible? There are all of these kind of interesting treatment options now. There’s a noninvasive vagus nerve stimulator that I’m really interested in. I don’t know if you follow that, but you know, we’ve known for a long time that if you have fibromyalgia, and you do a vagus nerve implant stimulator, that can really help. The problem was, it’s invasive and so it wasn’t worth it. But now there are noninvasive devices that you can accomplish the same thing with no implants. A person can do that at home.

[01:08:12]  JY — Does that work for fibromyalgia? It should, because it is anti-inflammatory in the brain, and it can help correct sympathetic and parasympathetic nervous system ratio. Both of those can be very good for fibromyalgia for a number of different reasons. So yeah, we need to test that device. You know, you may be able to treat it without even taking medicine, use it once or twice a day and have sustained benefits. So we need to do those clinical trials on some.

[01:08:38]  JY — I’m trying to get my graduate students to do them because they have to do their thesis and dissertation. I’m trying to say, “Okay, you’ve got to do a thesis dissertation anyway, why don’t we do it on a potential cool treatment? Let’s just do a clinical trial, try it out and see if we get something.” So, that’s part of my daily work to get the students doing some. We can run more clinical trials and get more things tested. Those are the types of things, and we’ll do some of them, but then, wow, there are so many people researching fibromyalgia, and there’s so much… I can’t even keep up with what everyone’s doing. That’s the good news, that a lot of people are dedicating their whole careers to fibromyalgia. It’s definitely got attention. I don’t know who’s going to come up with that answer first. There’s a lot of competition, but somebody’s going to do it.

[01:09:24]  TS — That’s a race I’m happy to support. That’s cool. 

I thought of something while you were talking. A couple episodes ago I had the founder of Oska Wellness on and did an interview with him. They have a PEMF device, and I was curious if you have ever looked at that for help with inflammation. It’s pulsed electromagnetic fields. It’s the same thing they use for regrowing bone.

Is that done on a bed, body wide or is it…?

[01:10:07]  TS — This is actually a small device. It’s something that people can use at home. I know that they’ve used it for years in doctor’s offices, but this is actually a home device. I’ll shoot you the links.

[01:10:19]  JY — I can’t speak to that. I just haven’t looked at it. I have to read a published clinical trial and scrutinize it, and I don’t know if they’ve actually published on it yet. Certainly there’s a lot of neuromodulatory research like transcranial magnetic stimulation. That’s more powerful but you can’t do that at home. It’s like a $50,000, really, really strong magnet that goes right through your skull and changes neuronal functioning. Those can help. Then there’s transcranial direct current stimulation, that’s something you can do at home. And, of course, there are all kinds of stimulators. I think the question is what, where to put that? Is that vagus nerve? Is that spinal related? Do you go to the brain directly? If it’s the brain, where in the brain? There are many groups working on that angle. I’ve kind of left the neuromodulation to other groups because they’re doing such a good job, and we’ll get the answers on whether those work. But yeah, I don’t know how efficacious the PEMF is.

[01:11:23]  TS — Cool. I just thought I’d ask. 

Where do you think we’re going in the next, say, five to ten years? What’s your prediction for the future of fibromyalgia?

[01:11:41]  JY — I believe that we’ve been researching this for a long time, but, in talking with my colleagues, I feel like a lot of the lines of research that were in their infancy a few years ago are now getting to their kind of pay off. I feel like five to seven years is the time frame where there’s going to be really big, groundbreaking results. And yes, people probably said that 20 years ago as well, but there really feels like something different [is happening]. There’s a maturation of the fields, whereas other people before were just throwing out ideas. Most of them were wrong. Now, there’s starting to be a consensus on what areas of the body to look at, and things are converging now. I really feel like we’re getting close.

[01:12:35]  JY — I think one of the trends that have hurt the field in general is treating fibromyalgia as a single disease. When you do that, you look at patients versus controls. If only one third of the patients have that thing and you do patients vs. controls, you may not notice the difference because it may wash out if you have too many people. I really think the field is going to benefit from subgroup analysis and realizing that maybe for a third of fibromyalgia patients it’s some type of autoimmune. But maybe in a third it’s some type of chronic infectious thing. And maybe for a third it’s something else. And now enough researchers appreciate that’s the case. So, I don’t think they’re making that mistake of throwing away good ideas just because it doesn’t work for everybody.

[01:13:24]  JY — That’s something we’re going to see change. I think there’s going to be a major breakthrough. But then, also, I think we’re going to get more sophisticated at chopping away at the patient group and saying, “Okay, we may not be able to cure 100%, but hey, this works for 25%. Now we’ve got them handled. Now let’s see what’s left. Here’s 75% what’s the next thing?” I think that’s the way it’s going to work because we’re going to find a handful of major things that are going to be treated differently that’s causing the same set of symptoms. We have to start thinking that way to really handle the problem.

[01:14:03]  TS — Yeah, I totally agree with that. I’ve thought for quite awhile now that in my lifetime we’re going to see this thing called fibromyalgia being divided up. Just watching and working with enough clients over the last ten years and watching how different people respond. It just seems a little bit like, maybe, diabetes or something — where we’ve got two things that are called the same, that have similar symptoms, but actually are different.

[01:14:29]  JY — That’s a good example. Yeah.

[01:14:32]  TS — So, we might have different types of fibromyalgia [like Type 1 and Type 2 Diabetes], or we may come up with new names for new things we discover. I agree with you that we’re going to start seeing that divided up, and it makes sense that that would affect the research too, right? Because if you have a lot of this particular group over here and not as many of that group over there, and it just helps one of those groups, then it looks like it didn’t really work when it actually did.

[01:14:56]  JY — Exactly. Yeah. And the problem is for large clinical trials, you have to have an overall group effect. You could have one third of people that have a great response, and that may not meet the FDA requirements. I think we need to change that thinking. I mean, if you have a drug that works for even 10%, that’s a lot of people. I think we should have as many tools as possible. As long as they’re not dangerous treatments to try, we might as well give them a shot. A lot of these have low side effects, and so we should give them a shot.

[01:15:28]  JY — ​So, yeah, I think that’s gonna be true. I think, ultimately, I would love in 10 or 15 years to not even have fibromyalgia as a diagnosis because we’ve understood all the subgroups and we’ve given them appropriate names based on the pathology. That’s when we’re done, when there’s no more fibromyalgia diagnosis out there. It’s a chronic herpes virus infection or it’s a microglia activation dysfunction or something like that. It’s still a long way to go to that, and maybe there’ll be a group where fibromyalgia will always be descriptive. I mean, it’s still helpful, but I really want to carve those out to meet the promise. Divide and conquer.

[01:16:09]  TS — ​Yes. I love that. There have been a lot of things that we’ve talked about for patients, like getting involved with studies, getting involved with advocacy. Do you have any particular resources that might be helpful for patients if they want to participate in some of this?

[01:16:29]  JY — ​Sure, let me think of some ideas. One good place to start is ClinicalTrials.gov. If you’ve never gone to that, it’s a federal site. Any US-based researcher who’s being serious about their work should register their study with ClinicalTrials.gov and you should be able to search for it. If you go to clinicaltrials.gov and put in fibromyalgia, you should see all the actively recruiting clinical trials and find out if there’s something close enough to you to go to. That’s the best resource for that. If you’re not close to a major institution, an academic institution, it can be hard to participate. We, unfortunately, usually don’t have funds in the NIH budgets to fly people in. I wish we could, because we could get people from all over the country that would actually do that. It’s a lot of work to come in. We’d need the budget to do that. Some of the studies are kind of long, so that’s hard to do. So yeah, I would check ClinicalTrials.gov.

[01:17:33]  JY — ​​What’s another good resource? There’s a site called NIHreporter.gov. I can send you this, or you can put it in a link somewhere where you can see all the grants.

[01:17:51]  TS — ​​​Yeah, I was just gonna say we’ll put it all in the show notes. So that’d be great if you want to send it.

[01:17:55]  JY — ​​​That’s a site where every researcher that has received funding for anything is listed. You can check that by putting in fibromyalgia, and then you will see by geographic region, “Hey, there is an institution 45 minutes away that’s got this cool fibromyalgia study.” I think that’s the best way. There’s not a really good resource for connecting patients with particular clinical trials that I know of. Maybe they exist but we don’t use them. I wish we could improve that communication.

[01:18:25]  TS — ​​​Yeah, that would be great. I know you guys have a great Facebook page. Do you announce your studies on there?

[01:18:35]  JY — ​​​​Absolutely. I know for sure if you want to stay on top of what we’re doing, the Facebook page [will help you] do that. Any new study I start, we’ll put the link for how you can screen, to see if your eligible for it. Then, we keep them up with news, and I put the preliminary data on there, so you can see the results there as much as I can talk about them first. That’s the idea. Just from my lab.

[01:18:58]  TS — ​​​Okay, perfect. And for those of us with fibromyalgia, especially if they’re in your area — you’re in Alabama, right?

[01:19:05]  JY — ​​​Yeah. Birmingham, about the center of the state. For most of the studies, if you’re within two to three hours, because sometimes there are a few visits, that’s usually pretty doable. Outside of that, it’s kind of a case by case basis, but definitely if someone’s in Alabama. We’ve got all these brain imaging studies coming up. We have clinical trials. There are a lot of things to participate in.

[01:19:27]  TS — ​​​Awesome. Now, I know a lot of times when I talk to people about clinical trials, there’s some hesitation. Would you just talk directly to those people who are thinking, “Hmm. I don’t know.”

[01:19:42]  JY — ​​​Yeah. That’s a good point. I guess they can sound scary. There’s a pro and a con to all clinical trials. The obvious pro is that you’re getting something that could really help before most people can ever have a chance to try it. That’s really cool. You could get something that can help you five years before it would otherwise be available to you. The downside is that it’s experimental, and so we don’t have all the information about what side effects could be or what it could do. I think the steps involved that you don’t see to get to that point where we’re doing a clinical trial on people… There are so many steps involved. There are so many government entities making sure that this is safe, that it is really hard to find something, like for fibromyalgia, that’s going to cause problems.

[01:20:35]  JY — ​​​We detect [those problems] way before. Usually, there are smaller trials before in animals and in vitro proficiency and toxicology elements. So if there’s something on ClinicalTrials.gov and you’re thinking about participating, you’re probably going to be safe to do that. 

Now, the downside of a clinical trial is, it’s not individualized to you. If you go to your physician, they can titrate your dose or raise it or lower it, because your clinician is about helping you as a person. Clinical trials are about finding out something from the population. So, we, maybe, can only give one dosage. We’re not allowed to change it, so it won’t be as tailored for you. So, there are some downsides, but I think, usually, when it gets to that point, we’re pretty confident that it’s going to do something.

[01:21:24]  JY — ​​​​I know for our lab, we won’t put forward any treatment that has any serious adverse events. That’s not what I want to do. I don’t know if other groups would do that, but if there’s any evidence that it’s actually going to cause problems, then that’s a no go. I think most people at our clinical trials have a really good experience. We try to make it really easy. You’ll get capsules of something. You may not know what it is. It may be a placebo for part of the time, and it may be the active drug. That may be a downside, “Am I on the drug or not?” But you can trust us. We’ve set it up. When we’re at the end, we can tell you, “Here’s when you were on placebo; here’s when you were on drug; and here’s how you responded.”

[01:22:07]  JY — ​​​​With a lot of clinical trials, if it ended up working for you, there are ways where you might be able to get that medication, even though it’s not commercialized yet. Certainly, if someone goes through our clinical trials, we try to find a way to get them that drug, if it worked for them really well. I think the pros outweigh the cons for the individual. The real big thing is, if people don’t participate in those trials, we can’t go forward with treatments. I mean, that’s the end of it. We have to do those to get the information out. So, it’s critically important to developing new treatments.

[01:22:47]  TS — ​​​​Absolutely. I think that… I hear so many fibro patients who are all saying, “We need better options”, but we can’t have better options unless we show up as patients for those tests. You know, to let you guys use us as Guinea pigs to try those things out. Like, that’s the only way it’s going to happen. So, for those of you, if you’re near Birmingham, make sure you connect up with Dr. Younger. We’ll also have those other links out on the show notes so that you can check those out. I think that’s really important.

[01:23:23]  TS — ​​​​Any last thoughts that you have or you want to share about the work you’re doing or researching?

[01:23:30]  JY — ​​​​Wow. There’s so much to talk about. You know, we touched on some really good things. I think we did a good job talking about some of the focus on the new things that are coming up, which is what I like, as a scientist. It’s what I like to focus on. I think in terms of a kind of an overall thing. I still, and I’ve said this before, through different venues, but I look at brain images all the time and all kinds of different ways, different modalities, and I have still never seen anything that suggests that there’s any true damage occurring that’s lasting. I’m saying this as someone who actually goes in and looks at the function of the brain.

[01:24:20]  JY — ​​​​I truly believe that once we reverse that process in someone, they can go back to being the way they were before. You may have heard of a couple of imaging studies where they say, “Oh, the brain is shrinking faster or something.” But that’s kind of hyperbolic. When I go in and look at it, it’s nothing like what it’s being reported to be. Extremely minor stuff on small sample sizes. In the collective evidence, I don’t see anything suggesting it’s neurodegenerative, it’s destructive. It’s not even like rheumatoid arthritis where you get joints breaking down. It is a physiological thing. The amplified signals can be corrected, and then you will feel better again. As soon as we can get that tool to people where they can use it, I think we’ll just wipe out the problem.

[01:25:12]  TS — ​​​​That’s awesome. I’m really glad you brought that up, because I do talk to a lot of people who are worried, especially with the brain fog that we get, where we can’t remember things and we say the wrong words and we put our keys in the fridge and it’s like, “Oh no, am I, is this something like Alzheimer’s?”

[01:25:30]  JY — ​​​​Right. And that’s not the case. If someone who doesn’t have fibromyalgia gets a horrible case of the flu, you can’t think, you can’t plan. That is a chemical thing. It doesn’t mean that your neurons are being killed or anything. It’s just that’s what those microglia do, to force you to not want to do anything. That whole process you feel when you have fibromyalgia, that is an evolutionarily conserve process to make you want to get in bed or lie on the couch and rest. It makes it hard to do everything, but it’s just a chemical thing. There’s nothing being destroyed. It’s designed to get you to lay down so your body can fight off this infection. But in the case of fibromyalgia, it’s activated when it shouldn’t be. So your body’s acting like it needs to fight off an infection even though there may not be an infection. And so you feel like you’re sick all the time, and you suffer all those consequences. But if we get those cells back to the normal state, those symptoms go away. That includes the cognitive symptoms as well.

[01:26:28]  TS — ​​​​That’s awesome. I love that. And I’m one of those people who always uses that as an example, when people say, “Well, what does fibromyalgia feel like?” I always use the example of those days when you have the flu and your hair hurts and your eyelashes hurt and you get tired just going from your bed to the couch. That’s what it’s like. And you’re saying that actually is what it is.

[01:26:51]  JY — ​​​​Yes. I’m almost totally convinced is the same thing. It’s just chronically turned on in fibromyalgia.

[01:26:58]  TS — ​​​​Hmm. So fascinating. 

Well, we’ll go ahead and wrap it up here, but I just wanted to say: anytime, you are welcome back. Anytime you want to share new research, or if you are looking for people, do let me know. I would be happy to share that on the podcast and let people know that you’re looking for people.

[01:27:17]  JY — ​​​​Great. Will do.

[01:27:19]  TS — ​​​​​All right. Thanks.