Multiple Sclerosis research & breakthroughs

VIRGINIA BEACH, Va. (WAVY) – Thanks to research over the last year, a number of breakthroughs have been made in the world of Multiple Sclerosis.

Bruce Bebo, the Executive Vice President of Research for the National MS Society, said doctors are now diagnosing MS earlier, and more accurately, than ever before.

Bruce Bebo speaking at an MS Society event
Bruce Bebo speaking at an MS Society event

“Everyone, once they get diagnosed, looks back and goes, gosh, I remember in college, my hands were tingling, or some sensory symptom usually, right? And then you’re young and it goes away and you ignore it. Then, those are probably some of the earliest signs of MS, and we’re starting to figure out how to recognize them,” said Bebo.

He cited a recently published study that used artificial intelligence to look at healthcare databases, and electronic medical records.

“So, if you look at electronic medical records, and you take a big group of people that were diagnosed with MS and another group of people that weren’t diagnosed with MS and compare, using artificial intelligence, their interactions with the healthcare system in the years prior to them being diagnosed, there’s a pattern emerging in how people who eventually get diagnosed with MS get access to health care system. So, maybe that could be an early warning sign that could start identifying people at high risk for developing MS very early on. So, when you go to the doctor for a cold or an injury or whatever it might be, it gets recorded in your electronic medical record, right? So, you see the doctors in the office and they barely make eye contact with you. They’re entering all the information in the computer and all that’s stored in this electronic medical record. This study looked at the medical records of people with MS in the three to five years before they were diagnosed, and there are specific patterns of how they’re interacting with the healthcare system that are specific for MS. So, in this study, the authors were able to identify people with about 80% accuracy, almost 85% accuracy, three years before they were ever even diagnosed with MS. I think the vision I have is that perhaps you are a person that’s at high risk for MS. You have a family member with MS, or a family history of MS, and that’s noted in your electronic medical record, and you start accessing the healthcare system in ways that look like someone who gets diagnosed later. It turns on a little warning light on your electronic medical record, right? It wouldn’t really technically qualify as a diagnosis for MS, but most conditions have this phase prior to the actual diagnosis of disease where there’s something starting to happen that would trigger some indicator in the electronic medical record that said, hey, maybe we ought to do an MRI on that person. Another thing I’m excited about is biomarkers that might be able to monitor the disease progression by a blood biomarker and response to therapy by blood biomarkers. That may even be another tool that we could use to identify people with MS that are about to develop MS or in the early stages of MS, and I think we’re getting close enough that we might be confident enough to start treating people in that earliest stage before they have any symptoms.”

According to the National Multiple Sclerosis Society, “Multiple Sclerosis is a disease that impacts the brain, spinal cord and optic nerves, which make up the central nervous system and controls everything we do. The exact cause of MS is unknown, but we do know that something triggers the immune system to attack the CNS. The resulting damage to myelin, the protective layer insulating wire-like nerve fibers, disrupts signals to and from the brain. This interruption of communication signals causes unpredictable symptoms such as numbness, tingling, mood changes, memory problems, pain, fatigue, blindness and/or paralysis. Everyone’s experience with MS is different and these losses may be temporary or long lasting.”

According to the National MS Society, more than 2.8 million people worldwide have multiple sclerosis. Nearly one million of those diagnosed live in the U.S., including WAVY-TV’s own Katie Collett. She was diagnosed with multiple sclerosis in August of 2012.

Bebo said diagnosing MS as early as possible is key to a better outcome. He cites two recent studies he says he is very excited about.

“There is this condition where sometimes, accidentally, we find people with MRI lesions that are identified accidentally. Someone goes to their doctor and they have a headache, or they’ve been in a car accident, and it triggers an MRI of their nervous system, and they see indications in the image that are suggestive of MS. Those lesions are the right size and shape and in the right places in the nervous system that are highly suggestive of MS, but that person doesn’t have any clinical signs or symptoms of MS yet, and that’s called radiologically isolated syndrome. There have now been two studies where people with this radiologically isolated syndrome have been found, and some of them have been put on treatment, and the treatment has been shown to significantly delay, and perhaps even prevent, the onset of MS. So, what I’m talking about is identifying these RIs intentionally, rather than accidentally, potentially through blood biomarkers, through, I guess, these patterns of healthcare engagement. One has a family history, maybe genetic risk might fit into that as well, but you can imagine something like an algorithm that would plug in these factors and say, hey, this person’s at high risk for MS. Let’s put them in an MRI scan. Let’s give them a blood test and see if we can intentionally find RIs, and then potentially treat them with disease modifying therapies that would delay, and perhaps in some cases even prevent, the onset of MS. So, I’m very excited about that. I think we’re not quite there yet. I think some of these studies using artificial intelligence are just published in the last year or so, and I think they need to be replicated. Then, of course, going from a study to an application of that is another step that has to happen, but it’s really moving in that direction. The diagnostic criteria for MS now includes clinically isolated syndrome, which is a person who has the radiologic signs of MS, and has had one clinical episode of MS, but not a second one. The diagnostic criteria for MS require evidence of two attacks. So, technically, in the past, those people have not been considered to have MS, but now the diagnostic criteria have been widened, if you will, or inclusive now of that. So, people with just one clinical attack can get access to disease modifying therapies. I think, perhaps, the next diagnostic criteria may include this radiologically isolated syndrome as part of the whole sort of arc of MS, and I think that’ll be a sign that we’re moving in this direction, that this radiologically isolated syndrome is part of the diagnostic criteria, part of the arc.”

As to why more people are being diagnosed with MS?

“I’d like to think it has something to do with the National MS Society’s awareness efforts. Certainly the events like the walk that create awareness of MS over the decades. The MS Society has been around for over 75 years. So, I’d like to think that we’ve had some role in increasing, enhancing awareness. It used to be when I’d travel around the country, and I’d be on a plane, and someone would ask you what you did, I’d say I worked for the MS Society. People would go, ‘You mean Jerry’s kids?’ And I’m like, no, that’s muscular dystrophy. This is a different condition, and I’d have to explain it. Now, more often than not, I’m in an Uber, I’m in an airplane, and somebody asks you what you do, they almost always know what you’re talking about. They almost always go, ‘I have an aunt or I have a friend.’ I’ve seen in my time working in this a huge advance in awareness, and I like to think the Society had something to do with it. I also wonder, maybe you’ll remember the show, West Wing. The president had MS on that show for several years. I think they did a really great job of accurately depicting what MS can do and the consequences. That’s my own personal thought, but I think that may have also increased awareness, but I like to think it’s the hundreds of walk events, the dozens of bike events, the advocacy work that the Society has done over the decades that has had a terrific role in increasing awareness,” said Bebo.

He also acknowledges the celebrities who have recently announced their MS diagnosis.

“Christina Applegate, when you watch Married with Children or whatever show, and you know, there’s something going on in her nervous system, right? And while we’re watching her, and if we could have picked it up, then how things might have been different. So, I do think we are ever more focused on creating awareness about the early signs and symptoms of MS with the idea that we can get people to see a neurologist ever earlier and treat them ever earlier with better outcomes. If you ask an old neurologist now, what they’ll tell you anecdotally, is their lobbies, their waiting rooms, used to be full of people in wheelchairs, and now they’re not. It’s not scientific, but it’s real anecdotal evidence that we’ve made a tremendous difference.”

Bebo said there are still unmet needs in the Multiple Sclerosis Community.

“One of the big ones is Progressive Ms. So, we think aging may be a variable in this, but the disease matures and it evolves into, it doesn’t always, but it can evolve into a more progressive form. It evolves from being an autoimmune disease, where the immune system in the blood crosses into the brain and causes damage to the nervous system to more compartmentalized immune reactions. So, the cells that are sort of sequestered or trapped within the nervous system. They are interacting with cells of the nervous system and contributing to a slowly evolving damage and slowly evolving accumulation of disability in some people with MS. We don’t have good treatments for that phase or that form of disease. So that is a huge priority of the National MS Society. We are working ever more closely together with our colleagues around the world. We started an effort called the International Progressive MS Alliance almost a decade ago to pool our resources, to coordinate investments, and leverage our investments in areas where we see particularly high opportunity to advance our knowledge and ultimately translate that knowledge into treatments for progressive MS. So, we’re gaining a better understanding of those interactions and those circuits, if you will, in the nervous system that are contributing to progressive MS. The pipeline of possible therapies for progressive MS is growing, and clinical trials are accelerating. I think we’re more close than we ever have been to making a breakthrough in progressive MS.”

Bebo said he is excited about the progress in the repair of myelin in the nervous system.

“In MS, it’s the nervous system, and specifically, it’s the myelin sheath that insulates and wraps around nerve fibers in the nervous system. That’s the target of the autoimmune reaction in MS. So the immune system goes into the brain, it sees myelin, and accidentally, inadvertently recognizes it as something dangerous and attacks it and destroys it. It’s the destruction of that nerve insulate, that insulating material around nerve fibers, sort of like insulation around an electric cord, that disrupts the electrical activity in a nervous system and causes the symptoms that we see in MS,” said Bebo.

He said he was part of workshop in March with about 50 of the world’s experts in myelin repair.

“The first meeting of this group was in 2002, and it was very controversial because the basic scientists who were working on remyelination were saying, you know, I think there’s something here. I think we can do this, and the clinicians were saying, no way. This is a pipe dream. This will never happen. You’ll never be able to do this. Why are we wasting our time? Fast forward 20 years later, I’m at the same meeting, and we have demonstrated that we can repair myelin in humans. When I say we, the royal we, the collective we, we have shown that remyelination in humans is possible. There are numerous, numerous targets and numerous programs exploring different ways to promote myelin repair. So, to go from 20 years ago, where people thought it was impossible, to having it demonstrated and be on the cusp of perhaps having some early treatments that could promote repair is pretty awesome progress as well.”

Awareness and funds raised by the National MS Society, and events like Walk MS, help develop research that gets us closer to a cure for Multiple Sclerosis. The WAVY Warriors will once participate at Walk MS in Virginia Beach. It’s this Sunday, April 7 at the ODU VA Beach Higher Education Center. The site opens at noon. To join our team, click here.

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