Meet the MS sufferers who believe a strict diet has kept them in remission

Zoe Johnson was 21 and in her second year at university when she developed pain in her eye. Later, she grew increasingly concerned when she started to lose her eyesight. “It was like when you look through a frosted bathroom window, and you can see shapes rather than actual things,” she said.

Doctors suggested it could be eyestrain from studying, but then it got gradually worse. “I woke up and I sat up in bed and said to my boyfriend, who is now my husband, ‘I can’t see anything. I can’t see anything out of my eye’. It was frightening.”

Four years later, Zoe was diagnosed with multiple sclerosis (MS). Now, 11 years on from her initial symptoms, she believes a special diet has contributed to her staying well.

MS is a neurological condition caused by the immune system mistakenly attacking the brain and spinal cord. It is not clear why this happens, but it may be a combination of genetic and environmental factors.

The condition causes a wide range of potential symptoms, including problems with vision, movement, sensation and balance. It is very difficult to predict the course of MS and the severity of symptoms will vary from individual to individual.

There are more than 130,000 people living with MS in the UK, with nearly 7,000 people newly diagnosed each year, according to MS Society.

MS can occur at any age, but typically people develop symptoms between the ages of 20 and 40 – when they are in the so-called prime of life. Often, people living with MS are dealt the blow of diagnosis while building their careers, buying a house or raising a family.

Although medication can slow down the progression of MS, there is currently no cure for it. As a result, many people say they are able to manage their symptoms with diet and lifestyle changes – but that is not the case for everyone.

One such diet is the Overcoming MS (OMS) programme, which Zoe follows. It advocates eating whole and plant-based foods, cutting out dairy and meat, and avoiding saturated fat and altered fats. It also recommends fish and seafood, as well as vitamin D, exercise and meditation.

The man behind the OMS programme is Professor George Jelinek, an Australian specialist in emergency medicine. He was diagnosed with MS aged 45 in 1999 and was determined not to succumb to the same disease that had ravaged his mother Eva. After a 16-year battle with the condition, she took her own life aged 58.

His background as an editor-in-chief of a major medical journal gave him the tools to carry out an exhaustive analysis of the medical research, digging up hundreds of half-forgotten medical papers, some dating back to the 30s.

What he has learnt saved his life, Professor Jelinek told i. Now, 24 years on from his diagnosis and aged 69, the father-of-five says he has remained free of further relapses and enjoys swimming and running regularly.

He has gone on to publish more than 150 peer-reviewed papers and eight books, bringing together a community of MS sufferers around the world. He claims tens of thousands of people are following and benefitting from the OMS programme over the past decade.

According to the MS Society, research into the diet has not provided conclusive evidence of its benefits.

A five-year follow up study showed that people who had followed this diet reported they felt better physically and mentally, but there was a very high drop-out rate, making it impossible to draw firm conclusions about the diet.

How studies through history have looked at diet and MS

It was Dr Roy Swank who first proposed a low saturated fat diet to treat MS around 1950. The neurologist studied the epidemiology of the disease, and found that the rising consumption of fat in Western countries such as the US, Europe, Canada, and Australia correlated with their MS rates increasing.

He also noticed that in Norway, people who lived in fishing communities (where fish is the main part of the diet) were significantly less likely to develop MS than Norwegians based in the mountains (where they eat a lot of meat).

Dr Swank placed his patients on a low saturated fat diet and followed them for 34 years. His study, which was published in The Lancet in 1990, reported that 95 per cent of those who adhered to the diet of 20 or fewer grams of saturated fat a day, did not experience progression of their MS.

But his claims were considered unsubstantiated by medics who said his methodologies were flawed.

Then in 2011, Professor Jelinek started a large international observational study involving 2,500 participants, called Health Outcomes and Lifestyle in a Sample of People with Multiple Sclerosis (HOLISM).

With findings published every two-and-a-half years, the research reported that meat eaters had a 23 per cent higher 12-month relapse rate, compared to those who didn’t eat meat. Dairy eaters had a 21 per cent higher relapse rate. Those who consumed omega-3 in the form of flaxseed oil supplements had a 60 per cent reduced relapse rate.

When it comes to vitamin D, for decades researchers have known that the further away from the equator a person lives, the higher the risk of MS. While there are many possible reasons for this pattern (e.g. exposure to viruses), many studies have shown a link between low vitamin D levels and MS.

In 2016, scientists found that children born with very low levels of vitamin D were more likely to develop MS in later life. One large study that same year found that people born in November were less likely to develop the disease than those born in April, suggesting levels of vitamin D exposure during pregnancy may play a role.

The OMS programme recommends a daily dosage of 5,000 IU in summer and 10,000 IU in winter, with regular tests to ensure the patient is within certain limits. It claims the vitamin boosts the immune system, lessens the severity and frequency of MS symptoms and lengthens the time it takes to progress from RRMS to the secondary-progressive phase.

Professor Jelinek stresses that taking disease-modifying drugs is a personal decision to be made between the patient and their neurologist and is not in conflict with the programme.

Types of MS

There are three main types of MS:

• Relapsing-remitting (RRMS), where people have new attacks and old symptoms, which is called a relapse. Around 85 per cent of people with multiple sclerosis are diagnosed with this form.
• Progressive MS, when symptoms from the start gradually worsen and accumulate over several years, and there are no periods of remission. It’s usually diagnosed in people in their forties and it affects affects about 10 to 15 per cent of people diagnosed with MS.
• Secondary progressive MS (SPMS) is the next stage for about two-thirds of people with RRMS. This is where disability gets steadily worse and people usually no longer have relapses, when symptoms get worse but then get better. It typically happens between 10-25 years after the initial diagnosis.

There is not yet enough evidence for doctors to recommend any special diet for people with MS, the MS Society says. Anyone considering a diet or lifestyle change should speak to a doctor or dietician before making any changes.

But some people with MS say that diet helps with their symptoms or makes them feel better.

‘MS does not define me’

Zoe Johnson, 32, from Camberley, Surrey, suffers with fatigue, brain fog and temperature control, but generally feels well. She believes the OMS diet is helping her to stay healthy.

After she was diagnosed, she cut out junk food and began exercising regularly, but in October last year developed numbness on one side of her face a year after having her baby – which she believes could have been prompted by the pressures of returning to work.

“I’ve only been on the diet a relatively short time and only cut out dairy and eggs earlier this year, but I do 100 per cent believe that being a vegetarian for most of my life definitely has made a difference to my health and MS,” she said.

“I’ve always not really been into junk food and I was raised cooking from scratch. My dad is Greek and I’ve eaten a Mediterranean diet, including extra virgin olive oil, lots of seafood, whole foods and vegetables.”

Ms Johnson now works as a digital product manager at Overcoming MS. “I’m so grateful that I have this role where people truly understand what I’m going through,” she said. “I am part of a community of people where have an optimistic outlook despite their diagnosis. MS does not define me.”

‘I have power over my MS’

Sue Allaway, now 64, was diagnosed with MS in 2011 after suffering slight hearing loss in her left ear.

She says there were telltale signs of the disease over the decades before. “There’s been a couple of incidences where my grip wasn’t good,” she said. “One time I was filling up the car and I suddenly didn’t have strength to lift the nozzle.”

Ms Allaway, from Torbay, Devon, had always led an active, outdoor lifestyle, including rock climbing. She was shocked when her neurologist said when she was first diagnosed that having seen her brain scans he expected her to walk with a stick.

Three years after diagnosis, she suffered a relapse which caused foot drop, a general term for difficulty lifting the front part of the foot. She then took medical retirement from her role as a teacher in a special needs school.

A year later in 2015 she found out about the OMS regime and gradually adopted it. In a typical week, she goes to the gym twice and does a yoga session.

“I thought I would find it easiest to start with the things I already did to some extent, which were the exercise, meditation and mindfulness. I was already vegetarian, so that part of the diet came easily, I have also now cut down on dairy, although I do still have a little.”

Ms Allaway, who also takes disease modifying drugs, hasn’t had a relapse since starting the diet. She’s a little unstable on her feet now and again, and has swapped her mountain bike for a trike for stability.

“Given that I think I first had symptoms in 1983, it could be that my MS journey would be very slow anyway. It could be that the diet has improved my life chances. All I know for sure is it makes me feel that I have power over my MS. I finally have power.”

More research needed

Proponents of OMS argue the programme is backed up by a robust scientific evidence base. But the fact remains that no one regimen is currently classed as the “gold-standard” in the management of MS.

The MS Society’s stance is that there isn’t enough evidence to recommend any special diet for people with MS. The charity says that the best approach is a healthy, varied diet.

Dr Catherine Godbold, the society’s research communications manager, told i: “MS is unpredictable and different for everyone, and we know a healthy lifestyle is an important tool to help people manage their MS. For example, stopping smoking and doing more exercise can help improve a range of MS symptoms. And some people tell us following a special diet – like the Overcoming MS diet – can help too.

“While there is emerging evidence of the value of a ‘brain healthy’ lifestyle for MS, there isn’t enough to support lifestyle changes alone. What we do know is early treatment with a disease modifying therapy  can reduce relapses and slow disability progression.

“And we need more research to assess the effectiveness of diets and other lifestyle changes in MS. Everyone’s lifestyle is their personal choice, and we’d recommend speaking to an MS specialist before making any big changes.”

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