← RealTalk MS
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- [00:01]
A
I'm john strum and this is real talk, mississippi. It's May 12th and we have a lot to talk about. Depression is one of the most common symptoms of ms, and I'm choosing to say symptom instead of side effect. Statistically, one out of every two people living with Ms. Will experience a major depressive episode at some point in their Ms. Journey. I've often said that depression is that 600 pound gorilla that's just sitting in the middle of the room because when you're depressed, it becomes easy to withdraw and stop engaging with every other aspect of your life. As a consequence, so many other things can get worse. You may not feel motivated to keep appointments with your neurologist, physical therapist, or other members of your care team. You may not stay on your disease modifying therapy. You may isolate yourself from your friends and family. And all of these things can have a very real impact on your health. The good news is that while there isn't yet a cure for MS, there are effective treatments for depression. In today's episode, Dr. Anthony Feinstein joins me for a deep dive into understanding Ms. Related depression and more importantly, what you can do about it. But before we get to my conversation with Dr. Feinstein, there are a few other things that you should know about. Newly published study results show that in the United States, it can be tough getting in to be seen by a neurologist or where the average wait time is 50 days. And it's a little tougher to be seen by a neurologist in the US if you're living with multiple sclerosis when the average wait time is 54 days. In this study, researchers analyzed insurance claim data from more than 114,000 people between the years 2019 and 2023. And they looked at the amount of time that had elapsed between someone seeing their primary care physician or being treated at a hospital's emergency and their first appointment with a neurologist. And as I just mentioned, that average wait time was 50 days, while people living with Ms. Waited 54 days. There's a known shortage of neurologists across the US and even around the world. So you might assume that the wait to see one is due to scarcity. But the research team discovered that those wait times were dependent upon several other factors. For example, people experiencing stroke, traumatic brain injury, or vertigo typically saw a neurologist in about 43 days. Women tended to see a neurologist a week sooner than men. And patients with consumer driven health plans that featured high out of pocket costs got into a neurologist's office about two and a half days sooner. Patients living in New York, New Jersey, Pennsylvania and Massachusetts had the longest waits. Even though these areas relatively high numbers of neurologists in practice, waiting almost two months after you've been referred to a neurologist can feel like an eternity. So what does someone do? Well, you can be sure that many people turn to social media. Some folks turn to Dr. Google and others turn to Dr. Chatgpt. But because Ms. Can present so differently from one individual to the next, reading someone else's social media posts about their experience may not be particularly helpful and may actually be a terrifying ordeal for someone waiting for an Ms. Diagnosis. That 54 day wait for an initial appointment isn't benign. It can be a scary time when, in the absence of any facts, an individual's imagination shifts into overdrive, coming up with all kinds of terrible outcomes. As science makes significant progress in finding ways to diagnose Ms. More quickly and more accurately, perhaps those same advancements will also shorten the wait time to get that diagnosis. Now, if you'd like to review the details of this study, you'll find that link in today's show. Notes A pilot study is recruiting up to 60 people who are living in the United States with relapsing remitting Ms. And are between the ages of 22 and 50 to test an implantable nerve stimulation device that's designed to reduce inflammation and promote myelin repair. The device is designed to provide electrical stimulation to the vagus nerve, which is one of the longest nerves in the body, running from the head all the way to the abdomen. The vagus nerve helps regulate several different body functions, and it's involved in the inflammatory reflex pathway, which can help reduce inflammation and restore immune balance. The device itself is about the size of a capsule you might take orally, and it's implanted in the left vagus nerve region of the neck through a small incision. It runs on a rechargeable battery that can be recharged wirelessly, and its electrical pulses can be adjusted by healthcare providers using an iPad application. All study participants will receive the implanted device, but only about two thirds of the participants will have it activated at the start. They'll receive stimulation through the device for one minute each day for 48 weeks. The remaining participants will receive non active stimulation and they'll serve as controls. After 48 weeks, participants in that control group will be able to switch to active stimulation and all of the study participants will be followed for another 48 weeks to determine the long term safety of the device. I should also point out that a version of this device has already been approved in the United States to treat adults with rheumatoid arthritis. Sites for this pilot study include the shepherd center in Atlanta, the UW Medicine Multiple Sclerosis center in Seattle, the Minnesota center for Multiple Sclerosis, West Virginia University, Johns Hopkins University in Maryland, Utah Medicine Multiple Sclerosis and Neuroimmunology center in Texas, and the University of Texas Health Science center in Houston. If you'd like to learn more about this pilot study, including getting the contact information for the study, you'll find that link in today's Show Notes. This Thursday, May 14, at 12 noon Eastern Time and 9am Pacific, the National Ms. Society is hosting a webcast entitled Making It Count Now Mobilizing for Federal Funding in a Changing Policy Landscape. The webcast will include an update on the Society's advocacy efforts to protect funding across the federal budget, including funding for the Ms. Research Program, the National Institutes of Health, the Centers for Disease Control, and the Food and Drug Administration. It's hardly a secret that the current administration in Washington, D.C. has not been supportive of medical research or for that matter, science of any kind. We've seen research funding eliminated at an unprecedented level, we've seen labs close, and we've seen thousands of professionals at the FDA and CDC fired. None of this helps fuel the future of scientific research in the United States, and that includes Ms. Research. So this webcast can be your first step toward understanding the issues and choosing to become an Ms. Activist. You'll learn what's at risk, you'll hear the National Ms. Society's strategy for making an impact with our legislators in Congress, and you'll see how lending your voice to this effort can help drive the change we desperately need to see. This webcast takes place in just two days, so if you're ready to register, you'll find a link in today's show Notes. While we're talking about advocacy, last month the House Committee on Education and Workforce's Health, Employment, labor and Pensions subcommittee held a hearing entitled Profit over the PBM Business Model under Scrutiny. We've often discussed PBMs or pharmacy benefit managers on this podcast. They're the multi billion dollar companies that determine which drugs appear on your health insurance formulary and which tier of the formulary those drugs will be included in. These PBMs negotiate huge rebates and discounts with pharmaceutical companies, but those rebates and discounts are never passed on to patients, which is how PBMs got to be multi billion dollar companies. In this hearing, the National Ms. Society submitted a 10 page statement for the record detailing how PBMs make disease modifying therapies more costly and financially out of reach for so many people living with Ms. If you'd like to review the Ms. Society statement, you'll find that link in today's Show Notes. I want to remind you that this episode of RealTalk Ms. Is sponsored by Able Now, a tax advantage savings program for people with disabilities. If you're living with multiple sclerosis, this is important news. Expanded federal rules mean more adults with disabilities, including many people with ms, can open an ablenow account. ABLE now lets individuals save and invest money without affecting their eligibility for certain public benefits such as SSI or Medicaid. For many of you, it can be an essential financial tool. To learn more and understand if you're eligible to open an account, visit ablenow.com and you'll find that link in today's show notes evidence shows that clinical depression will impact one out of every two people at some point during their Ms. Journey. And while you may not be able to get rid of your ms, there are effective treatments for getting rid of depression. In a moment, we'll meet my guest, one of the top experts in the world on the neurobehavioral consequences of multiple sclerosis, Dr. Anthony Feinstein. My guest today is Dr. Anthony Feinstein. Dr. Feinstein is a professor of psychiatry at the University of Toronto and an expert in the neuropsychiatry of multiple sclerosis. In fact, Dr. Feinstein has spent the past 26 years researching behavioral disorders in people living with Ms. He also maintains a busy clinical practice in which over 80% of the patients are people living with Ms. And he's the author of a fascinating book entitled Mind, Mood and the Neurobehavioral Consequences of Multiple Sclerosis. Welcome back to the podcast, Dr. Feinstein.
- [11:37]
B
Thank you, John. A pleasure to be here.
- [11:39]
A
Depression is one of the most common symptoms of ms, and I'm choosing to say symptom instead of side effect. Statistically, almost one out of every two people living with Ms. Will experience a major depressive episode at some point in their Ms. Journey. And many people assume depression in Ms. Is a purely emotional reaction to living with a difficult diagnosis. Can you explain how Ms. Actually physically rewires or affects the brain's emotional circuits to cause depression?
- [12:12]
B
Yeah, you're quite correct that for decades it was thought that depression was an understandable reaction to a very tough neurological disease that was known as the reactive hypothesis. But we now know with advanced brain imaging that Ms. May be linked directly to the pathology that you see in the brain. And researchers have come up with what they call a depression network that seems to underlie depression in people with multiple sclerosis. The data come from fascinating sources. They come from three groups of individuals who are depressed who never had Ms. The first group had single lesions in the brain, for example, stroke, and found the anatomy of that. The next group individual had transcranial magnetic stimulation, a treatment for depression. They focused on the anatomical region there. The third database came from individuals who did deep brain stimulation to treat depression. And from 14 discrete data sets, they came up with this depression network. Researchers then took that network and applied it to people with multiple sclerosis and looked at a whole host of symptoms from motor strength, ambulation, sensation, cognition, anxiety, fatigue, et cetera. And that network only mapped to a single symptom, complex depression. So pretty robust evidence that there are pivotal regions in the brain that can underpin depression. And if you've got damage to these regions, you may well develop a clinically significant depression.
- [13:45]
A
I'm thinking my next question may relate to that depression network. I'm wondering whether there's a correlation between where a person has lesions or atrophy and their likelihood of experiencing severe clinical depression.
- [14:00]
B
Exactly. I think that's exactly it. So if you've got a heavy lesion load in this network, if you've got destructive lesions involved in certain key areas, dorsolateral prefrontal cortex, ventromedial prefrontal cortex, subgenior cingulate, regions like that, the chances of developing a depression go up. So, yes, there's a clear link between anatomy that's damaged and the presence of a clinically significant depressive illness.
- [14:31]
A
When we talk about ms, we often talk about inflammation and physical relapse. What role does systemic inflammation play in triggering a depressive episode?
- [14:42]
B
Well, there's reasonable data from immune studies linking depression to inflammation disorders of the immune system. Excuse me. What's fascinating is that there's also some really compelling psychotherapy data, not just from people with multiple sclerosis, but from many other conditions, that effective psychotherapy improves immune system function. So the link between depression and immune system disorders is really quite robust from a clinical perspective. If someone has a relapse in their multiple sclerosis, it may be accompanied by a depressive illness or a return in depression. Not invariably, but it may be. But depression is so complex, we see individuals come in who have worsening in their mood in response to negative life events. Difficult life circumstances. And so the psychosocial influence on depression has to be considered as well. We are very intrigued by the biological underpinnings of depression, but we cannot ignore these very powerful psychosocial correlates of depression. And when it comes to the way people cope with their multiple sclerosis, there's good data now to show that maladaptive coping is linked to depression. So we know that individuals who have a coping strategy that's avoidant are more likely to become depressed. And people have a coping strategy that's problem focused, problem based coping. So we know what are the good coping strategies. And that too is linked to the likelihood of developing a depressive illness.
- [16:21]
A
Fatigue, brain fog and sleep disturbances are symptoms of both Ms. And depression. How can a patient, or for that matter, a clinician, tell the difference between Ms. Progression and a mental health shift?
- [16:36]
B
Yeah, and that crops up all the time in clinical practice. It's absolutely relevant to our research data as well. You know, the diagnostic criteria for a major depression comes from the American Psychiatric association. And these were criteria developed for the general, general population. And they list nine discrete symptoms of which you've got to have five over a two week period to sustain the diagnosis of a major depression. The challenge from an Ms. Perspective is that some of these symptoms may in fact be core features of multiple sclerosis and not depression. Things such as fatigue or difficulty concentrating or disturbance in sleep. And so as a clinician and a researcher, you've got to be very vigilant that you don't mistake these somatic confounders or symptoms of depression. Now, there have been some patient report outcomes that have been developed specifically for people with medical illnesses taking into account these somatic confounders. For example, the Hospital Anxiety and Depression Scale. Seven questions for depression, seven questions for anxiety. This scale does not include those somatic confounders. So there are no questions related to sleep or appetite or concentration. They focus on the core depressive features of sadness, anhedonia, inability to enjoy yourself, negatively of thoughts, et cetera. So there are ways to try and work around this very important clinical point that you just raised.
- [17:58]
A
How does untreated depression impact a patient's brain fog or cognitive processing speed? Does a depressed brain have less bandwidth to fight off Ms. Related cognitive decline?
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B
Yeah, you know, that's a question that my lab has looked at in depth. And I have a fellow who's published a very interesting paper recently looking at a very large sample of people with multiple sclerosis exploring the association between depression on the one hand, and cognitive difficulties, on the other hand. And we found that it's quite a robust association that if you've got clinically significant depression, it may worsen the cognitive difficulties that you have with multiple sclerosis. Absolutely. Depression is the single biggest predictor of a poor quality of life in someone with multiple sclerosis. And this is replicated data over decades for many different societies as well. You know, depression has many negative connotations for people with multiple sclerosis. It leaves them at risk for suicide. You know, the rates of completed suicide in people with Ms. Are twice what they are in the general population, almost surely linked in part to clinically significant depression. So depression comes with very significant real world consequences. Suicide, cognition, quality of life, et cetera. It's a major, major factor in the lives of people with Ms. Is there
- [19:21]
A
research suggesting that clinical depression can actually accelerate lesion load or physical disability, or is it purely a quality of life issue?
- [19:31]
B
Well, you know, there's this fascinating data, not just in people with Ms. For other disorders as well, to show that successful psychotherapy improves immune system function. And because we know that depression and Ms. Are both immune mediated, we have the potential of saying, well, psychotherapy might improve the immune system, thereby having benefits in terms of a person's mood or multiple sclerosis. I think it wouldn't be too controversial to say that. There was also a really lovely study done a number of years back looking at stress reduction psychotherapy in people with multiple sclerosis. And they gave 16 weeks of stress reduction. And during this period, individuals had frequent brain MRIs together with gadolinium enhancement to look at brain activity. There was a control group who never got the stress reduction and what they saw very clearly, this is quite fascinating that the individuals who got the stress reduction psychotherapy had less acute brain lesions and less contrast enhancing brain lesions during the period that they got the psychotherapy. So there's hard evidence that effective psychotherapy changes the brain MRI in a beneficial way, just as it benefits the immune system by improving immune system function. So you can see some MRI changes as well.
- [20:44]
A
Pretty compelling data talking about potential treatments for depression. What does the latest research say about the efficacy of exercise, mindfulness, even maybe specific disease modifying therapies in terms of improving mood?
- [21:02]
B
Well, the consensus paper from the American Academy of Neurology, which is quite an old consensus paper, but I think it's still valid, says that cognitive behavior therapy is probably the treatment of choice for someone with Ms. Who's got depression. And cognitive behavior therapy focuses on a depressed person's negative thinking. So when someone becomes depressed, the thoughts turn negative and that can drive the depression and the low mood. You use the CBT to identify what we call these negative cognitions, these depressed thoughts, isolate them, help the patient correct them, and then you start seeing the benefits in terms of their mood. There's also some nice data to suggest that mindfulness based stress reduction can help depression and by the way can help fatigue. So that's useful. There's a much smaller literature suggesting that antidepressant medication might be helpful, but modestly so. People with Ms. May be susceptible to side effects that come with antidepressant medication, but if you tolerate the medication well, some individuals certainly can benefit from antidepressant medication. And indeed, you know, if you're living in a community where you don't have ready access to CBT or mindfulness, sometimes antidepressant medication becomes the treatment of default. There's now a new move towards online computer driven cognitive behavior therapy, which I think is quite fascinating. I think that's the future that they are now quite effective computerized CBT programs. The computer essentially administers the therapy to the person with multiple sclerosis and getting some good results. And over time these programs are being refined with improved results as well. Exercise is intriguing. I think exercise is good for you for multiple reasons. And there is a literature to suggest that exercising can have some mood related benefits as well might help fatigue also. So there are many strategies that can be tried to try and shift a person's depression.
- [23:03]
A
I try to remind my listeners that Ms. Just doesn't always impact individuals, it can impact entire families. How does taking on the role of an Ms. Care partner impact the care partner's mental health and well being? And how does the mental health of the care partner impact the neurological outcomes of the person living with ms?
- [23:26]
B
Well, those are all such important questions. I mean, you know, the depressed patient has an effect on those who live with them, those who are in close, you know, proximity to them over time. So it's not easy to live with a person who is, you know, perpetually sad or irritable or potentially suicidal. And so that becomes a burden for spouses, for children, for close friends. And so that's often not addressed clinically as well. It's really something that's often overlooked. And so one has to be mindful of the fact that caregivers family members can also be affected by the patient's depression. It's very important that becomes part of the continuity of care that's provided to someone with multiple Sclerosis, if the caregiver becomes depressed, then of course you've got the same situation in which that depression can feed back and affect the person. With multiple sclerosis, if you've got the patient and the caregiver depressed, you've got a potentially very difficult situation, and I certainly come across it in my clinical practice as well.
- [24:33]
A
For someone listening who feels stuck, but they aren't sure if it's just the Ms. Or something more, what is the most important question they should ask their neurologist or Ms. Specialist at their appointment?
- [24:48]
B
I think this is where I can probably have the biggest impact in my podcast with you is if you're unsure, ask your neurologist, ask your gp, ask the clinic nurse. Don't, don't sit on your depression, don't suck it up, don't keep quiet about it. You've got a condition that is potentially treatable. We know that depression is often missed in a busy neurological practice. There's good data to show that from multiple clinics, depression can be overlooked. And that's a big oversight because I've spoken about the downside to depression. Such a major determinant of quality of life made a determinant on risk for suicide. It could further impair cognition. So you don't want to miss the diagnosis. And so if you don't feel happy, if you feel irritable, if you've lost your ability to enjoy life, if certain activities in the past that you took pleasure in no longer give you the same pleasure, if you're sleeping poorly, if you've got early morning waking, speak to your neurologist, speak to your gp, say, I'm concerned that I might have a mood disorder. You know, can you screen me for depression? Let's talk about depression. Speak up about it, Become your own advocate. It's such an important clinical point.
- [26:06]
A
I have always personally believed that your research has set the gold standard when it comes to learning, discovering new things. When it comes to Ms. Neuropsychiatry, I'm wondering, what would you say is the most important or exciting area of research currently taking place in the field that gives you the most hope for seeing further progress over the next five years?
- [26:31]
B
Well, I do think that the brain imaging MRI data has been fascinating. You know, having a firm neural correlate of depression, I think is very important because it now, you know, indicates that depression is really integral to multiple sclerosis. You know, looking to the future, we need to improve our ability to detect depression, and that's through education and I think just educating people about the importance of this particular symptom, educating neurologists, Ms. clinics and patients themselves. But there are new novel therapies that are now coming into prominence. And I speak about something called transcranial magnetic stimulation, which is applying a magnetic current to those parts of the brain that we know are important in terms of depression, like the dorsolateral prefrontal cortex, which is part of the depression network that I spoke about earlier. And we've recently completed a pilot study at Barr center looking at transcranial magnetic stimulation in people with Ms. Who've become depressed. Number one, the therapy was well tolerated. Number two, it was effective for many individuals with depression, so their mood got better. But here's the intriguing third part which I think is so fascinating. We saw that in individuals whose depression improved, there was an associated cognitive improvement as well. Now, these are early days and these are pilot data and we need to do bigger studies powered to get a more robust result. But there's a potential there on the horizon, just around the corner of new treatments that can improve the management of depression in people with Ms. And potentially improve some of their cognitive difficulties as well. A well tolerated treatment.
- [28:16]
A
Dr. Anthony Feinstein, it's always a pleasure talking with you. I want to thank you for all you do to improve the quality of life for people affected by Ms. And thanks so much for talking with me today.
- [28:27]
B
Thank you, John. It's always a pleasure to talk to you.
- [28:30]
A
That's going to wrap up this episode of Real Talk Ms. RealTalk Ms. Is powered by the National Ms. Society and you can share this episode of the podcast by letting your friends or family members know that all they have to do is point their web browser@realtalkms.com
- [28:50]
B
and
- [28:50]
A
you'll find that link in today's show Notes so you can easily copy and paste it right into an email or a text. When you consider your Ms. Care team, you might think about your neurologist, a physical therapist, perhaps a urologist or a psychologist. But what about your dentist? Maintaining good oral health is an often overlooked but important facet of Ms. Care. Next week, Dr. Ann Spalarich joins me to discuss the intersection between oral health and multiple sclerosis. I hope you're planning to join us. I'm John Strum. Thanks for listening. Stay safe and make healthy choices.
- [29:40]
B
Sam.