Finding Digital Solutions for Multiple Sclerosis and Fatigue

This interview with Pablo Villoslada, MD, is part of a larger series of interviews where we discuss the intersection of healthcare and technology with subject matter experts from Adhera Health’s Advisory Board. 

Dr. Pablo Villoslada is an accomplished neurologist with over 20 years of experience in translational medicine, bridging academia, biotech, and pharmaceuticals to pioneer treatments for neurological diseases. As a member of the Adhera Health Board of Advisors, Dr. Villoslada brings with him comprehensive expertise in drug development, from discovery through clinical trials to regulatory processes with bodies like the FDA and EMA. Dr. Villoslada’s experience extends to medical devices, including neurostimulation, bioinformatics, and machine learning. Beyond medical practice, Dr. Villoslada is a serial entrepreneur, founding and advising numerous biotech and MedTech startups in CNS and ophthalmology (Bionure/Accure, QMenta, SpiralTx, Attune Neurosciences, CLight, Adhera Health, NeuroPrex). 

What made you specialize in neurology? 

After finishing medical school, Dr. Villoslada was interested in surgery and medical conditions. “I was very passionate about science and trying to understand how the brain works, what is the basis of brain disease, and how to cure brain diseases,” says Dr. Villoslada. “This is the reason why I decided I chose neurology because I was interested in doing research and care for diseases of the brain. This was my main interest.” 

How has the field of neurology changed over the past 10 years? What areas have you seen the most change as far as treatments are concerned?  

Dr. Villoslada explains how the brain is more complicated and less understood than any other system in body. "For this reason, in the past centuries we have only made some progress." Now, he explains, advances in fields such as immunology and cardiology, have ushered in a golden era for therapeutics with respect to neurology. 

“For the last five years, we have seen a new revolution in neurology. And this is due to genetics, meaning the ability to genotype everybody, identify all the mutations now, now all the RNA technology that has been a revolution for vaccines and now is becoming a revolution for therapeutics for these genetic diseases, and to the level that we are seeing impressive improvements, even patients being cured with some of these genetic diseases; this is unique. We believed it was far away and now it's here. And finally, we are seeing now the beginning of a new therapeutic area for neurodegenerative diseases, meaning there is the first approval for Alzheimer disease, and there is a lot of research on new therapeutics for Parkinson’s, ALS, and all the others – in the next 10-20 years we are going to see a complete change in how we manage and treat patients with brain diseases.” 

What are the main differences between neurological and psychiatric disorders?   

“From my perspective, nothing. And I think that many of my colleagues agree, not everybody, because there is a tradition of psychiatry and neurology. The difference, in practical terms,” explains Dr. Villoslada, “is that psychiatry is mainly about positive symptoms of brain diseases, meaning abnormal behaviors happens, imposed ideation, delusion, hallucinations, these kinds of things. Neurology is about negative symptoms. You lose motor, sensory, speech, and other functions. If you see the damage to the brain, this is neurology. If you see nothing because of the technology, this is psychiatry.” Neurology relies on psychiatry; psychiatry can become more precise with neurological advancements. “Now, when technology is advancing, we have a better resolution, and we can see more things; for this reason, we are changing definitions of decisions.” 

As digital health technology and the use of digital health technology to promote and deliver post-diagnostic care and neurological conditions are becoming increasingly common, what technology and approaches are you seeing that help improve the efficiency and efficacy of neurological disease management? 

Dr. Villoslada believes applications that aid in disease diagnosis and monitoring are effective at improving neurological disease management. “Education, coaching, these are two activities that can be delivered through, let's say, apps, websites, and maybe other systems – digital health system – that are beneficial for the patient because patients are desperate to have information, especially to personalize the information for their own case. Otherwise, you know, you may see information about very severe cases, and your case, maybe it's not so severe.”

Says Dr. Villoslada. “In terms of diagnosis or monitoring the disease course? Yes. In some cases, data health can help to monitor decisions in which you have a readout. For example, you can, let's say have an EEG recorder: you can monitor EEG in the same way that you record glucose in your Apple Watch. Or motor symptom monitoring during Parkinson's disease: how fast you move, the tremors you have, these kinds of things. Or fatigue and ambulation, meaning based on the level of your activity and to some extent your mood, and pain based on physical and cognitive activity.”   

How important is it to address fatigue in neurological conditions and how can tools that support both mental and physical fatigue and self-management help? 

“Fatigue is very important in multiple sclerosis, in chronic fatigue syndrome, which is now called Myalgic Encephalomyelitis, post-Covid, which more or less is the same thing. And in some other diseases it's important, but not as important.”

Dr. Villoslada gives greater context. Someone might be experiencing increased fatigue “after a stroke” or due to Parkinson’s, but because of their severe disabilities, fatigue isn’t a prominent issue. “But in the case of MS, it is so important because people may suffer severe fatigue, meanwhile they don't have an obvious disability, meaning they're able to walk and to play sports. But the main complaint is fatigue, and they're usually younger than other patients with brain diseases, meaning that yes, fatigue is pervasive among many neurological conditions in some of them. Because of the population and because the level of activity or the quality of life impact maybe is more prominent. In terms of how to address that, we don't have any treatment that works for fatigue. Meaning the only thing that we can do is provide some information, advise, and train people to self-manage their own energy to live with fatigue.” 

Have you worked with patients with MS or other neurological diseases who have used tools for self-management? And what is your experience with how that helped with fatigue for some of the conditions you’ve talked about?   

“You know, in the case of fatigue, most of the time I always refer patients to the National MS Society, or any MS society in each country because they provide information and advice. This information includes some PDFs or some other material that explains to them how to self-manage fatigue. Whether they're using apps or digital solutions, for that, I haven't seen this too much.” As Dr. Villoslada explains, people with MS are generally “more active on the internet or searching for solutions, meaning that if something is there, they’re going to be the first ones trying it. But I haven’t seen a single solution that everybody’s extremely pleased taking.” 

In clinical care, how important is it to have greater precision and more personalization of neurological disease treatment?  

“The first thing is efficacy in neurology because we in general don't have treatments. You know, in the case of MS or in the case of stroke, efficacy now has increased quite a lot. Meaning this is the time to discuss personalization and accuracy. But because we are talking mainly about MS. Yes, in this case, the treatment we use – some of them have adverse events, side effects, maybe they're expensive. With most of the drugs, they are not personalized, meaning you provide the same doses to everybody's therapy regimen. And we cannot predict these side effects, meaning that in this sense, any personalization is going to be very welcome by the patients, because this is going to help to improve their quality of life.” 

How important is it to support the family caregivers of individuals with neurological conditions like MS and especially caregivers of children with these conditions?  

“First, I will divide between pediatrics and adults. Of course, in pediatrics, the parents are everything, meaning you need to truly work with the patients and the caregivers altogether at the same time, at the very beginning.” Dr. Villoslada continues. “In the case of adults, caregivers are important because most of the disease produced disability, and so later the patient, is going to be depending on the caregiver… But this is something that you need to do early, meaning don't wait until your fifties.” Managing MS causes a lot of strain on relationships and is an extremely difficult road to try to take alone. “In the past, they used to say that 40% of patients are alone and they don’t have a caregiver anymore. Ok. We’ll have somebody help, meaning social services or MS societies, or something. This is the reason why working with the caregiver, with the partner in this case, for adults is important.” 

Why did you choose to be a member of the Adhera Health Board of Advisors?  

“Because I was very interested in digital health. Because I believe this is a technology that can provide useful solutions for my patients to improve their quality of life. And especially because of the level of personalization: the fact that Adhera Health uses this artificial intelligence system to develop these recommendation systems is something that I think is unique, and I haven't seen with other data solutions. I think it will be perceived highly by patients with MS.” 

How Setting Goals Shapes My MS Journey

This year marks the 20th anniversary of my MS journey. Twenty years ago, the vision in one of my eyes became temporarily blurry, and it was the first relapse. After the second relapse the following year, when I became numb on the left side of my body, and after a series of tests, I was diagnosed with Multiple Sclerosis (MS) by a very kind young female neurologist in a local hospital in Finland. It’s one of those moments in your life that you’ll always remember and the fear of an unknown future that lingered for years.

Multiple Sclerosis is a chronic neurological condition where the nerves don’t work the way they are supposed to. This means that the messages from the brain don’t always reach the body. Many people with MS look normal and healthy, but many also need a wheelchair to move around, because their legs don’t receive the message from the brain on how to walk.

Looking back at those moments now makes me realize how fortunate I am, because it has turned out that my MS is not one of the aggressive forms. However, there is one main symptom that affects me the most in my everyday life, which is fatigue. Fatigue also contributes to another symptom which is sensitivity to light, sound, and smell. For example, if I am in a noisy place with lots of different sounds, I start to feel very tired. But if I step outside or find a quiet spot for a while, the tiredness tends to go away. The same happens in a place with very strong smells.

Tracking Physical Activity to Help Manage Fatigue

It has been scientifically proven in many studies that physical activity and exercise are the best medicines for fatigue and overall mental health. The problem that I’ve encountered during the years after visiting many neurologists, in different hospitals and in several countries, is that they are not experts in the field of physical activity and are unable to recommend anything regarding it, so I was on my own to figure this out.

I got my first smartwatch in 2017. First, I wanted to see how much I moved each day. Once it was clear that I didn’t move nearly as much as the recommended 10,000 steps daily, I started using the smartwatch as a “personal trainer” to reach the daily goal of 10,000 steps. However, after months of use, I realized I never reached that goal, and it was frustrating. I started to blame the watch and that it didn’t track all the steps I took, so I got another smartwatch. For a while I wore two smartwatches, one on each arm, to see the difference in their readings. It was true that the first smartwatch didn’t calculate all my daily steps. I guess it had something to do with how I move (or in this case don’t move) my arms when I walk, but still, I wasn’t even close to 10,000 steps daily. After a while, I completely lost my motivation and gave my smartwatches away to friends.

There are many kinds of smartwatches and many manufacturers, but most of them are aimed at professional or semi-professional athletes. It’s really demotivating for a person with a chronic condition to use the predefined programs for athletes and never reach the goals, no matter how motivating the messages from the watch might be.

Using Adaptive Self-Management to Reach My Goals

People like me need activities that are adapted to our abilities and smartwatches that can be either fully personalized when setting goals, or that can have the goal feature turned off so that it’s only used for tracking. This concept took me years to grasp and understand. It’s called self-management, which means I understand and take personal responsibility for my own behavior and wellbeing. Or even better – adaptive self-management, which means I can adapt according to how I feel, the weather, or the circumstances around me.

My personal goal is to exercise (as much as I can OR at least a little) but often – to make it a habit. Some days are not as good as others, but if you can achieve at least something little every day, then it’s a win. It’s OK if you miss one of your swimming lessons, but it’s NOT OK if you miss two lessons in a row. Then you’re losing the main goal of making it a habit.

It takes self-discipline to change your own behavior and improve your self-management. But no one said it was going to be easy.

I started horseback riding a year ago. I’ve never in my life been in any contact with horses before, but I figured I’d give it a try. It looked so easy. To be honest, I fell in love with the sport after the first try. Being outside, in close contact with an animal that moves in a way that can be quite unpredictable sometimes has improved my balance, my mental wellbeing, and overall fitness, while reducing my fatigue level. Of course, I don’t go as fast or as eloquently as the younger people in the more advanced group, but I do my best (depending on whether I have a good day or not) in a small group with my teacher, who has been supportive. I’ve also learned my limits from the times I have fallen off the horse.

My goal is not to compete one day in a competition or to do it as a living. I do it for myself and I’m fortunate to be able to spend money on activities that help with my health and wellbeing.

My Journey Inspired Adhera Health

The good news is there is help for people who want to take responsibility for their health journey. That’s why I’m so proud to be part of Adhera Health, which is committed to empowering people with chronic conditions like me to live healthier lives. The scientists and technologists at Adhera Health (one of them my husband) have developed the Adhera Precision Digital Companion, which is an adaptive self-management platform that delivers highly personalized programs.  The platform combines an AI-based health recommender system and content using real-world data that offers interventions and personalized recommendations based on observed and reported user behavior that helps people like me develop skills to better self-manage their condition and improve their lifestyle.

A major part of Adhera Health Digital Programs is setting goals. It is so important – it's what keeps me honest. It allows me to try new things and never give up. I’m grateful every day because after 20 years, I’m still in the stage of “invisible disease” – I walk without aid, I have a career, and a family with kids. Some days are great, some days stink but knowing it’s a journey helps. It reminds me of the famous quote “When you fall off a horse, get back on” and that’s exactly what I do.