people climbing up the Great Wall of China

How I Reached NEDA: the Nirvana of Multiple Sclerosis

For something with no known cure, the ultimate goal is reaching No Evidence of Disease Activity (NEDA)

When I was first diagnosed with MS, I only wanted to know one thing. How do I make it go away? When you reach NEDA, you have virtually achieved that.

NEDA means no evidence of disease activity. It’s a treatment goal for many of the highly effective disease-modifying multiple sclerosis drugs these days.  

Let me start by saying I am not against taking therapeutic drugs. Many of us need them. If you’re taking an MS drug that works, keep taking it. What I am saying is that no drug can do what food can.

The Definition of NEDA

Also known as NEDA-3, NEDA is a composite measure of three criteria. No relapses, no worsening physical symptoms, and no signs of disease activity on MRI scans. (With NEDA-4, there’s a fourth metric of brain volume loss.)

NEDA is a nirvana because you feel like you don’t even have MS anymore. When I got there, I forgot I even had MS.

Some of the newer, highly effective drugs might be able to get you NEDA over many years. 

But it takes time. It’s a pilgrimage more than a journey. A pilgrimage requires faith and perseverance, and that you take the first step. Then another one. And another one.

I got to NEDA via an unconventional route.

Who am I?

I am a boring, very ordinary Australian person. I have done some hard things in my life, but getting to NEDA wasn’t one of them. It was easy.

My first attack was in 1998. I was in the Australian Army Reserve doing officer training, which is all infantry. It was a physically punishing sixteen-day course, especially for a girl. I’d never experienced such misogyny and sexism.

The day after the course finished, I remember feeling elated that I was free. I’d succeeded. I stepped into the shower and saw myself in the mirror. 

My body looked like I’d been severely beaten. My flesh was a canvas of murky bruises. Some were dinner plate-sized. A forest of cuts was etched across my chest from carrying bundles of barbed wire. My hips were striped with blood blisters. 

What you couldn’t see was the electricity under my skin. I felt like there were tight bands around my ribs and thighs. It was like wearing an electrified corset.

For 16 days I’d been wearing an enormous army pack that towered over my head. It was so heavy, it had to be clipped around my chest so I didn’t fall over. I was still wearing it, this phantom army pack. It was squeezing my ribs, making me struggle for a deep breath.

When I tipped my head forward, a charge of electricity would run down my neck, and buzz in my fingers. 

Over a few days, the bruises changed colour and faded away. The cuts got smaller and then disappeared. 

But that phantom army pack stayed there for weeks, Finally, I spoke up.

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Surely there’s nothing seriously wrong with me

Everyone in my family is healthy. We don’t have cancer, diabetes, or major heart problems. We’ve been blessed with good genes and good health. 

I have no known allergies.

I didn’t believe there was anything wrong with me. So it took a few years, and more attacks, like optic neuritis, which left me almost blind for a fortnight, before I was diagnosed with relapsing-remitting multiple sclerosis.

What’s the deal with MS?

When I was diagnosed, I started learning.

Multiple sclerosis means many scars. The name itself is a description of the symptoms. It’s a chronic, and progressive auto-immune disease, according to Johns Hopkins Medicine.

In terms of the cause, several genetic sites have been identified as genes of interest. Both genes and lifestyle are responsible for the disease and its outcomes. 

We also know Epstein-Barr virus (EBV) plays a role. I got glandular fever in high school, so I knew I had Epstein-Barr. But the National Library of Medicine says 90 percent of the world has EBV too

The root problem with MS is demyelination. What happens with MS is the immune system thinks you have a virus that isn’t there. It attacks part of your tissue, mistaking it for the virus. Myelin is fatty insulation that protects nerves in the brain and spinal cord. 

In essence, multiple Sclerosis is an act of extreme miscommunication. 

Our adaptive immune system creates millions of specifically engineered grenades (antibodies) and fires them at our own myelin, thinking it’s an invader.

This is the best animation I’ve found that shows the adaptive immune system doing this.

This is advanced biological warfare. The myelin becomes inflamed and flares up. That’s why it’s called an ‘MS attack’ or ‘flare-up’.

Myelin has an important job. It protects the transmission of signals through the brain and spinal cord. The attack causes demyelination, which interrupts the transmission, leading to all sorts of collateral damage. Talk about ‘friendly fire’. 

Vision, balance, walking, sensory issues, you name it. Having a shower can feel like the sparks of a blow torch. 

Why does my body think myelin is a virus to attack?

I drilled into the why. There had to be a logical answer. Why does my otherwise healthy body think I have a virus that isn’t there? 

Was it a vaccination? Where is the glitch in my program? Was I bitten by a mutant insect? Was it the carcinogenic camouflage paint? 

Then I came across a theory that changed everything: molecular mimicry.

Occam’s Razor: The simplest answer is usually the correct one.

Let me draw a quick parallel. At the start of the agricultural revolution, another mysterious genetic auto-immune disease started occurring. 

Over the decades, some children suffered from chronic diarrhea and malnutrition. They were unable to thrive. The Beyond Celiac says that over a third of the children with celiac in the 1920s died from the disease.

Finally, scientists found the key. While it is complicated, today, anyone with celiac disease knows the trigger is gluten. Essentially, our food had changed. and some people hadn’t been able to tolerate it. Humans are still evolving, but we can’t evolve that quickly.

So I started looking for the trigger.

The one thing all effective MS diets have in common

Several of the most effective MS diets had one thing in common. No Dairy. I looked into the evidence for and against. It was a theory called molecular mimicry. A protein on the edge of milk fat droplets called butyrophilin closely resembles the part of myelin that gets attacked. 

The structure of bovine butyrophilin (a protein in cow’s milk) contains what looks like a double fold of paper. It’s distinctive. It has a ‘surprising similarity’ to the outermost layer of human myelin. The theory is that these similarities can easily fool the immune system. The paper even suggested the dairy industry try breeding the similarity out to reduce the burden of autoimmune conditions.

Scientists repeatedly demonstrated their hypothesis on animals. 

My mind was quickly blown.

“Genetics loads the gun, lifestyle pulls the trigger.” Caldwell Esselstyn

Conversations with my family and friends helped educate me that genes could be switched on or off. It opened a new doorway of understanding called epigenetics. We can’t change our genes, but we can influence the way our genes are expressed. Health isn’t set in stone. We often have the chance to turn genes off or make them inactive, through things like lifestyle and diet.

Dairy was a no-go. From that first rule, I was able to create a wellness plan (and diet) that worked for me.

It didn’t happen overnight. I read huge volumes of medical research over two decades. I tested the boundaries. At times I was very strict. Other times, I ate whatever I wanted. With no scientific method, I tested my diet on myself as a walking lab experiment.

Finally, I got to a point where it was simple and working. I had to make it easy enough for me to follow without any calorie counting, or fat tracking, or fussiness like that. If it needed a calculator, it was too hard.

It had to be simple and sustainable. And I had to enjoy what I ate because that’s the whole point of food.

I called it my Food Medicine Diet for MS


Over the years since 2013, I stopped having MS attacks.

The old flareups healed. Then I felt no symptoms at all. When I tipped my head forward, I didn’t get any buzzing in my fingers.

I began having dreams that I was running.

My partner noticed. You keep getting younger, were her words.

Somewhere around 2016, I started play-running. Just short sprints at the park with our two-year-old. 

One day, I tried going for a run! I ran past people walking, past dogs, past kids. The endorphins kicked in. My breathing was steady. No one paid me any attention, which was good. I suppressed my excitement the whole way. But after that one kilometre loop, I felt euphoria. I did it!

I recently read about a woman with MS, Cheryl Hiles, who runs marathons. Let me say, I have no desire whatsoever to run a marathon. But go girl!

people climbing up the Great Wall of China
sitting at fortress 12 Great Wall of China

In 2019, before COVID-19 emerged, I had another private joy. I climbed the Great Wall of China (to Fortress 12). It was a divine feeling. What a beautiful view!

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When I read that one million people in the United States now have MS, I feel angry. People become so incapacitated very quickly and it makes me upset. I want to reach out and tell you it doesn’t have to be a life sentence. Even if you can’t control everything, there’s a lot that you can control. There is hope. It is possible to get to NEDA, with or without drugs. I know because I’ve done it. 

I want to say this. If you’re on an effective drug that works, keep taking it. But do this as well. No drug can do what food can.

Three things I recommend to help you get to NEDA

1. Learn the basics of MS

I encourage everyone diagnosed with MS to start learning. Don’t be spoonfed what to do and what drug to take. Use your brain. Try to understand what happens inside your body before you say yes to anything. Let it sit. Your good health will be your biggest asset. Please don’t neglect your health.

Ask for the medical research for any recommendations made to you. Use PubMed.gov, which is the National Library of Medicine and has a repositiory of medical journals you can access. If you don’t understand the information, copy and paste it into ChatGPT and ask for a plain language translation.

2. Carry a vision of yourself that’s well

It can be tough when we get treated like idiots by doctors and neurologists. We all do. Shrug it off. You have the power.

Don’t feel like a victim. You’re not a victim, you’re a miracle. You have the control. 

Don’t define yourself by the disease.

MS is not you. You are not MS. Don’t define yourself with this disease. 

Think of a time when you were your happiest and healthiest. It could be you at any age. Lock that in. Bring that vision into your future.

If you could do anything, what would you do? Imagine yourself doing the things you love. 

Maybe it’s being full of energy so you can play with your kids. Maybe you’re walking around the neighbourhood in the sunshine. Maybe you’re running.

Lock in the vision. This is not woo-woo. This is mindset.

3. Make health your passion project

This can be a progressive disease, but we can slow it down so much it effectively stops.

Make your health your passion project. Cut the dairy. Eat real food (not junk food). Do some exercise you enjoy. Stop smoking. Go plant-based (if you want to). Get into nature. Think about your vision.

If you can stop triggering attacks for long enough, your old attacks get time to heal.

You can start reversing some of the damage. You can feel well again. You are still you on the inside.

Like I said, I am not special. Hordes of people have already reached NEDA. We’re all over the world. 

I hope and believe you can get there too.

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