Living with multiple sclerosis for around 35 years has given Dominic Shadbolt a perspective shaped by experience, curiosity, humour and a strong dislike of unfairness. He was diagnosed at a time when there were no disease-modifying treatments for MS. Since then, he has experienced several different immunotherapies, participated in clinical research, become active in patient advocacy and built his own platforms to provide clear and accessible MS information.
At the same time, Dominic is very clear about one thing: MS should not become a person’s whole identity. In this interview, we talk about denial, treatment decisions, increasing disability, HSCT, misinformation, communication with healthcare professionals, genuine patient involvement and the future of MS research. And we return again and again to one central idea: take MS seriously, but try to keep it behind you rather than allowing it to dominate your life.
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The person behind the advocate
Dominic, please introduce yourself and tell us who you are beyond MS and patient advocacy.
Dominic Shadbolt, PatientSignal | Insight Without Noise | theMSguide:
That’s an excellent way of putting it, because I always say to people that MS shouldn’t be everything about you. I’m Dominic Shadbolt. I’m 57. I have two passports. I’ve been to 35 countries. I’ve been married twice, and I have a 23-year-old daughter.
This time last year, I was in the middle of cycling across Canada to raise money for MS. I could go on and on. I live just south of Oxford in the UK these days, and I think the UK is going to be my permanent home.
You have lived with MS for around 35 years. What have been the key turning points in your journey?
Dominic Shadbolt:
When I was first diagnosed, there were no DMTs. There were no mobile phones. There was no social media. There were some internet bulletin boards, but you had to use dial-up through your telephone line. It makes me sound like a dinosaur, but the reason I mention it is that things like this podcast, the things I do and the things you do simply weren’t available then.
One of my key turning points bizarrely had nothing to do with MS. In early 2012, I was training on my bicycle and fell off. I broke my femur really badly, was picked up by an ambulance, had several operations and ended up with a huge piece of metal in my leg called a dynamic hip screw. I have never run since.
That was my first real insight into what I would call disability. I remember thinking: wow, this is strange. Physically, I simply cannot do something anymore that I could always do before. My brain might say, “Just run across the road,” but I can’t. That was probably the first time I really engaged with the idea.
Before that, my MS was almost an existential thing. I knew I had it, but it wasn’t affecting me too much. And when it did affect me, denial was my strategy. I probably dealt with MS through denial for the first 18 or 20 years. I pretended it wasn’t there. I didn’t tell people. I wasn’t public about it. I saw it as something that could potentially harm me commercially or professionally.
I don’t think I’m alone in that. You just get on with life. You think you should have a job, provide for your family and carry on. And MS gets in the way of that.
What inspired you to become such an active and direct voice for the MS community?
Dominic Shadbolt:
I can sum that up very quickly. I hate unfairness. I hate bullies. I cannot stand it.
I once applied for a Disabled Persons Railcard in the UK. Trains are expensive here, and the card gives you roughly a third off. They essentially told me I wasn’t disabled enough. And I thought: what do you mean, not disabled enough? Who makes you the judge of disability?
So I started digging into the law. There is a piece of legislation in the UK called the Equality Act 2010. MS is one of the conditions recognised as a disability from the date of diagnosis. It doesn’t matter how severe your symptoms are at that particular moment. So I challenged them.
Eventually I said: we can go to court if you want. You can explain why you think you know better than the law. Things went very quiet after that.
It sounds like a small thing, but that was what pushed me further into advocacy. I would rather not qualify for a disabled railcard. I would rather not have MS and pay full price. It isn’t a reward. But if you have MS and the law gives you certain rights, you should be able to access them.
Later, Aaron Boster said to me that I should start a YouTube channel. I thought, really? Nobody wants to hear or see me. But apparently quite a few people do.
If you would like to hear more from Dr Aaron Boster, you can also listen to my interview with him about the red flags that may indicate it is time to change your neurologist.
Understanding the patient journey
You have tried several MS immunotherapies. How has your approach to treatment decisions changed?
Dominic Shadbolt:
Initially, there was no choice. The first treatment was beta interferon. It was basically a binary choice: do you want a drug or not? So I started beta interferon.
Later, my neurologist became concerned about neutralising antibodies. Your body can recognise the treatment as something foreign and develop antibodies against it, which can make the therapy less effective. So I moved to glatiramer acetate, or Copaxone.
I really didn’t get on with that. I persevered for a year and never missed a dose, but my stomach where I injected looked terrible. It looked as though I had been shot with a shotgun. Eventually I said to my nurse: I can’t bear this anymore.
At around that time, a trial was starting involving dimethyl fumarate, which later became Tecfidera. So I took part in that. I’m fairly sure I was on placebo during the blinded part of the trial, but afterwards there was an open-label extension where participants received the active medication.
Later came other treatments. I had alemtuzumab, or Lemtrada. I sometimes jokingly describe that as a kind of chemical stem-cell treatment because it is a very strong immune reconstitution therapy. After that, I had ocrelizumab, or Ocrevus.
When Ocrevus became available in Oxfordshire, we had planned everything in advance. I was actually the first patient in Oxfordshire to receive it. And now I’m about to enter another trial, this time involving a BTK inhibitor.
My treatment journey reflects how much MS treatment has changed. When I was diagnosed, there was almost nothing. Now the challenge is deciding between many very different options.
During the Covid pandemic, you also raised questions about Ocrevus and vaccination. What happened?
Dominic Shadbolt:
Ocrevus essentially removes B cells. In very simple terms, it wipes them out. To make a normal immune response, you need B cells and T cells. When Covid vaccines were being discussed as the thing that would set everybody free, I made a video asking whether they would work properly in people taking Ocrevus.
Would there be a group of us who were effectively left behind because our immune systems responded differently? A well-known doctor saw part of that video and wrote a rather dismissive post implying that I had been reading too much of the MS Blog.
I was really annoyed. My wife told me not to be rude, so I waited 24 hours before replying. I wrote privately and explained why I had raised the question. They apologised and eventually asked me whether I would like to write an article for the blog.
So I did. I wrote a long and fairly technical article explaining the issue. The important point for me was this: just because you’re a patient does not mean you know nothing about science. Patients can read scientific information. They can understand it. They can interpret evidence.
Sometimes doctors can fall into the trap of assuming that a patient cannot understand something technical. Interestingly, that disagreement actually turned into a good relationship. I later became an honorary research fellow at Queen Mary University of London, where Barts is based. Life sometimes works out in very unexpected ways.
Looking back, what do you wish you had known when you were first diagnosed?
Dominic Shadbolt:
aHSCT. When I was first diagnosed, aHSCT was beginning to become a thing. The risk was much higher then and there was much less experience with it. But if I could turn the clock back, I would have looked at it much more seriously.
I probably would have scraped together the money and gone somewhere like Mexico 20 years ago and had it done. But you can’t cry over spilt milk. We only get one go at this life. I cannot beat myself up about the things I should have done. You deal with what is in front of you, not what is behind you.
During relapses or increasing disability, what has helped you retain a sense of control?
Dominic Shadbolt:
The first thing is that I try not to live my entire life through the lens of MS. I think that is really important. Sometimes I meet people and it almost feels as though their MS comes into the room just before they do. They define themselves entirely as a person with MS. I don’t think that helps.
Yes, I go to the gym. I exercise. And you can say that physical fitness is good for MS, but I would also say physical fitness is good for everybody.
Over the past year, my walking has deteriorated quite dramatically. This time last year, I was cycling across Canada. Now I walk with a cane. I sometimes say I walk like a newly born giraffe. I still go to the gym three times a week and work on the muscles. But if your brain doesn’t send the message properly, there is only so much the muscles themselves can do.
I once explained to a friend why I have always exercised so much. I said: when I fall, and at some point I probably will, I want to fall from a much greater height. I don’t want to be at the bottom of my fitness already when my physical capabilities decline. I want to be in the strongest possible position.
But control also comes from perspective. I’m me. I happen to have MS. It shouldn’t be everything about me.
Research, treatment and cutting through the noise
Where is there still too much noise and too little useful information for people with MS?
Dominic Shadbolt:
People with MS are often desperate to find something they can do. I completely understand that. I don’t like using the word gullible because that sounds insulting. It’s more that we’re all looking for ways to take control.
Maybe somebody takes a supplement. My view with supplements is that if you can afford it, it doesn’t harm you and you understand that it may not have strong evidence behind it, then at least you have actively chosen to do something.
But there is also a lot of rubbish out there. I recently came across a product online that was being sold as a kind of miracle treatment for MS foot drop. Of course, buying it involved giving somebody money. Whenever something involves handing over money for a miracle health claim, an alarm bell should go off.
I started investigating it. The product appeared under different names and on different websites, depending on the condition being targeted. And that is what makes me angry.
A newly diagnosed person may be frightened. They may have bizarre sensations, numbness or weakness and wonder what on earth is happening to their body. Using that fear to separate people from their money is objectionable.
If I make a video saying something is nonsense, though, I also need to back that up. You cannot simply say, “This is rubbish.” You need evidence.
What does not work well enough in the real world of MS care and research?
Dominic Shadbolt:
Communication is one of the biggest problems. I hear stories from patients about neurologists who they say are absolutely terrible. Then I sometimes meet those neurologists and think: they don’t seem that bad. So there must be a disconnect somewhere.
Not everybody is good at talking to their doctor in a way that gets them the information or outcome they need. At the same time, doctors are under enormous pressure. They have a difficult and complex job and often very little time, particularly in public healthcare systems such as the NHS. There are too few MS specialist neurologists.
And sometimes two people simply do not get on. We all meet people in life where, within two seconds, we know the chemistry is wrong. If that person happens to be your doctor, that is unfortunate. I sometimes think we should actually have training programmes for patients about how to communicate effectively with healthcare professionals.
Another issue is how differently people can be treated. I think men sometimes get treated better than women. I hear stories from women about symptoms being dismissed as anxiety, psychosomatic or something to do with the menstrual cycle.
At first I found it hard to believe that this happened so often. But I have heard too many stories like that. I’m a man. I can listen and empathise, but I will never know what it feels like to sit in front of a doctor and have my symptoms dismissed in that way. That needs to improve.
How can organisations distinguish genuine patient involvement from a box-ticking exercise?
Dominic Shadbolt:
Have you heard the term greenwashing? I sometimes call the equivalent in healthcare “patient washing”.
Companies like to say they have involved patients. But you have to ask whether that involvement actually changed anything. If involving patients had absolutely no value, commercially or otherwise, organisations probably wouldn’t do it. But the real question is whether the patient has genuine influence or is simply there so that somebody can say, “Look, we involved a patient.”
I also dislike the phrase “the patient”. There is no single patient. Every patient has different hopes, fears, education, life circumstances, sexual orientation, financial situation and experience of healthcare. You cannot put us all into one great big blob.
If somebody says, “We spoke to patients,” I want to know which patients. Newly diagnosed people? People with advanced MS? Young women? Older men? People in Germany? People in the UK? People in the US insurance system? They are not all the same.
If modern technology can target advertising incredibly precisely, surely we can also become more precise in the way we listen to patients. The clue is in the word individual.
I had one company approach me about an AI app for MS. I asked what patient data they were using to train it. They said German accident and emergency admissions. I said: stop. Those are not automatically representative MS patients. They are people who happened to be admitted to accident and emergency.
You cannot just group everybody together and call it patient data. AI isn’t necessarily bad. It depends entirely on how you use it.
Taking a more active role
What does being an active patient involve, and where should responsibility remain with the system?
Dominic Shadbolt:
The system cannot simply hand over responsibility and say, “It’s all your choice.”
One of the things that bothers me is when patients ask doctors for guidance and the answer is basically: “Here are some leaflets. You decide.” Imagine somebody who was diagnosed four weeks ago. They are not a neurologist. They did not spend years studying MS. The disease suddenly appeared in their life on some random Tuesday afternoon.
Then they are expected to choose between complicated treatments with very different risks and benefits. That is not enough. If somebody asks a neurologist, “What would you take?”, I think they deserve a meaningful answer. Doctors know the evidence. They have the expertise. Shared decision-making does not mean abandoning somebody to make the decision alone.
Another part of the conversation is risk. We talk a lot about the risk of treatment. But what is the risk of not treating MS effectively? That also has to be part of the discussion.
At the moment, we cannot look at somebody’s MRI and confidently predict exactly what their MS will do. Some people will have relatively mild disease. Others will become disabled very quickly. The problem is that we do not know with certainty who belongs in which group at diagnosis. So we need to take that uncertainty seriously.
We explored this question of AI-assisted prediction and more personalised MS treatment in greater depth in my interview with Prof. Friedemann Paul about the CLAIMS project.
How can people with MS have more useful and confident conversations with their healthcare team?
Dominic Shadbolt:
There has to be some degree of self-reflection. Sometimes people have a bad conversation with their healthcare team and then go onto social media and unload everything. I understand why. It feels good to get it off your chest. But it doesn’t actually fix the problem.
You cannot necessarily blame everything on the doctor or nurse. They may have handled something badly. But you also need to ask yourself whether there is anything you could do differently in the conversation. That is difficult when you have a disease you do not yet understand. But being an active patient means recognising what you can influence yourself.
We are all human. We all do things that are not necessarily good for us. Knowing something is unhealthy does not automatically mean we stop doing it.
I occasionally have a cigarette when I’m at the pub with a friend. I know perfectly well that smoking is one of the worst things I could do. There is nothing good I can say about it. And yet, in that moment, I sometimes still do it.
That is human behaviour. So I think we need honest conversations rather than pretending everybody will always make the perfect decision.
How can patients recognise MS information that is clear, balanced and trustworthy?
Dominic Shadbolt:
There are the usual established MS societies, and they work hard to provide reliable information. That is a good place to start.
But with any information, ask yourself some basic questions. What is this person’s motivation? Is there money behind this? Does somebody want my money? Does it sound too good to be true? Because if something sounds too good to be true, it usually is.
People like you, me, Aaron Boster and others all have slightly different ways of presenting information. People will naturally prefer different voices. That is fine. But look at the quality of the information. Ask why somebody is giving it to you.
And if you have only just been diagnosed, give yourself time. It can take a year or two simply to get your head around the fact that you have MS. It is difficult. You have been dealt a bad hand.
But eventually you find some kind of equilibrium. Do not destroy yourself trying to understand everything immediately.
Dominic’s work and current focus
What do PatientSignal, theMSguide and your other work offer patients and organisations?
Dominic Shadbolt:
PatientSignal is more commercially facing. It is bespoke consulting work with organisations.
theMSguide is different. There, I try to put out roughly one video a week. I’m lazy in the sense that I make one video and then put essentially the same thing on Instagram, Facebook, TikTok and YouTube.
People tell me: “You should optimise the content for every platform.” My answer is: you should optimise for having a life.
The important thing for me is that the information is factual. I want to explain something clearly. Most people are looking for understanding and explanations.
Sometimes people message me and say, “My son has MS and now I finally understand this.” Then I think: thank God, I helped somebody understand something better.
That is what matters to me. I am not trying to tell people what they should do. I want them to understand things better.
What is your current focus, and where could a patient-led approach make the greatest difference?
Dominic Shadbolt:
I run the patient board for a clinical trial in Cambridge. It is focused on people with very advanced MS. It is a complicated and expensive international clinical trial involving cord-derived neural stem cells being injected into the brains of people with severe MS.
I work with Stefano Pluchino at Cambridge and also with Klaus Schmierer at Queen Mary University of London. Then I have my social media work as well.
My own disability has also progressed. I now receive Personal Independence Payment in the UK, which is a disability benefit. And recently my disabled parking permit arrived.
That was half thrilling and half crushing. There are advantages. You suddenly discover you can park in places or avoid certain charges. I call those small victories.
But would I rather be able to walk another five minutes and not need the permit? Of course. I would rather walk normally and not have MS.
Looking ahead and closing
Which development in MS would you like to see over the next five years?
Dominic Shadbolt:
From a practical point of view, CAR-T cells. In very simplified language, I sometimes think of it as something like a next generation of immune reconstitution. You could say it is taking some of the thinking behind HSCT and moving it forward.
The hope is potentially lower risk and very high efficacy. Obviously, we still need research.
I think about newly diagnosed people. Imagine being able to look somebody in the eye and say: yes, this diagnosis is terrible news, but we now have a really effective therapy. Something that can make MS as small a part of your life as possible. That would be huge.
There is also a lot of discussion around EBV. Even if EBV turns out to be a necessary precondition for MS, that would be important knowledge. But we still have to distinguish correlation from causation and establish whether preventing EBV infection would actually prevent MS. There are still many questions.
If you would like to learn more about CAR-T cell therapy in MS, listen to my interview with Prof. Barbara Willekens, where we take a closer look at this emerging treatment approach.
What would you like to leave our listeners with?
Dominic Shadbolt:
The world has not ended. I know that for many people it feels as though it has. But focus on the things you can do rather than only on the things you cannot.
I have been highly athletic throughout my life. Now MS is taking away the function of my right leg. It feels as though my right leg is no longer part of the team. And I simply have to deal with that.
There is a phrase I heard from a Belgian neurologist that I really like. MS is like your shadow. You should keep it behind you. If it comes into view, do something about it. But until then, keep it behind you.
I think that is a great way of looking at it. Take the disease seriously. Get informed. Get treated. Pay attention when something changes. But do not make MS the whole of your life.
How and where can interested people find you online?
Dominic Shadbolt:
People can find me through theMSguide and through my work with PatientSignal. I use theMSguide across social media, including YouTube, Instagram, Facebook and TikTok.
My main aim there is very simple: to give people easy access to clear and honest MS information. I don’t like sugarcoating. Some things about MS are difficult. People deserve to understand what things actually mean.
And if somebody wants to ask me something, they can contact me. I may not always be qualified to answer the question, and I will say so when I’m not. But if I can help somebody understand something better, that is worthwhile.
theMSguide – clear, accessible information about multiple sclerosis
Dominic Shadbolt on Substack – longer-form writing and personal perspectives
Dominic Shadbolt on LinkedIn – professional updates and patient involvement work
See you soon and try to make the best out of your life,
Nele
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