‘I believe the cure for MS will be found’
Media lawyer Mark Lewis has spent three decades battling the condition. He tells Guy Kelly why he has renewed optimism
When Mark Lewis was 24 years old, he sat in a doctor’s office and braced himself for bad news. After visiting his GP for tingling and numbness that he had attributed to a probable bee sting to his wrist, he’d been passed on for a second opinion, then sent to a wrist specialist – the original diagnosis was a possible trapped nerve – and then, finally, to a neurologist.
Lewis received no sugar-coating. He was living with multiple sclerosis (MS). “I was surprised, but mainly because I had convinced myself it was a brain tumour. And so I told him that,” Lewis recalls. He’ll never forget the neurologist’s response. “He went, ‘No, we know what to do with brain tumours. We’ve got absolutely no idea what to do with MS’.”
Almost three decades on, MS – a complex and variable degenerative disease that attacks the brain’s neural pathways, causing damage and paralysis to parts of the nervous system – remains incurable. Yet many in the medical community are hopeful that revolutionary new treatments could soon change things, giving hope to the roughly 100,000 sufferers in the UK, and an estimated 2.5million worldwide. Now 52, Lewis still lives in MS’S grip. Over the years, his health and mobility have fluctuated, but his symptoms have grown progressively worse, and none of the treatments currently available – drugs that can slow signs of the disease, or holistic alternatives such as cognitive behavioural therapy and yoga – have helped.
Today, he cannot tie his shoelaces, do up his cufflinks or walk without a stick, such is the difficulty of moving. Balance and speech are problematic, and occasionally he will use a wheelchair, due to the partial paralysis of his right side. Were it not for his partner, Mandy, he believes he would probably need a live-in carer. “I have often been too proud to ask for help, or I’ve convinced myself I don’t need it,” he says when we meet at his office on Baker Street in London. “But really, that’s the thing about MS – your body doesn’t ever do what you want it to do, or what you expect it to. It’s why it is so frustrating.” As a celebrated media lawyer, who rose to public prominence after successfully representing hundreds of victims, among them the family of Milly Dowler, in the phone hacking scandal, Lewis has approached MS as he does his cases: eminently winnable, whatever the odds. Last summer, he decided to tackle the disease head on.
Joining MS sufferers from around the world, in 2016, Lewis became Patient 31 of 48 in a ground-breaking clinical trial that could offer a cure for MS – as well as providing a major breakthrough in treatments for Parkinson’s, Alzheimer’s and motor neurone disease.
Conducted at Hadassah University Medical Center in Jerusalem, Israel, the trial involved injecting stem cells derived from the patient’s own bone marrow directly into the spinal fluid – a method it is hoped will encourage cells to circulate around the body to the brain and spinal cord, from where they will pick up signals of damaged areas and set to work fixing them.
Mark’s trips to Jerusalem to take part in the trial were filmed for a Channel 4 documentary, The Search
for a Miracle Cure, which airs on
Thursday.
“My life at the moment,” he says in the film, before the trial, “is like an egg-timer. The sand is all going through, and I want the doctors to turn it around and start the sand again.”
Over the past few years, advances in stem cell treatments have been recommended as potentially curing heart failure, causing muscle
‘Your body doesn’t ever do what you want it to do or what you expect it to’
regeneration and allowing for the creation of blood – something which would render blood donation a thing of the past.
Research into the treatment’s efficacy for MS patients began at Hadassah in 2007, one of the first times the concept had been applied to neurological diseases. The hospital was ready for a full trial nine years later, and sought markedly strongminded patients to maximise the chances of long-term success. Lewis was a shoe-in.
“I heard about the trial happening from a friend, and felt like I had to be on it, so I met with them. I wouldn’t let it go,” says Lewis, who has four daughters from a previous marriage. “The mentality, I suppose, is important. When I got to the hospital, there was a Greek professor, a Palestinian Muslim doctor, some Christian patients. And from all over the world, so it was a real sense of everybody pulling together to try and crack this thing.”
With the incredibly patient Mandy, whom he met two years ago, Lewis made two trips to Jerusalem. The trial involved two rounds of treatment – one would inject the real thing, one would inject that placebo – and it would be “double blind”, meaning both doctors and patients were unaware of which was which. Only an independent controller was in the know.
Regardless, they both hurt. A lot. In order to be injected directly into the spinal fluid, doctors had to force a four-inch needle (similar to a lumbar puncture) between patients’ vertebrae. Lewis estimates it took doctors 90 minutes and two dozen attempts for the team to reach his.
“I cannot describe to you the pain, I thought I was going to faint,” he remembers. In the film, he says he was thinking of his David and Goliath-esque legal victories to quell the agony.
The results were extraordinary, and almost instantly visible.
“The first one was miraculous. Within minutes I was getting feeling and movement back that I never had. I immediately just asked someone for a piece of paper. They thought I wanted to write a note, but I just wanted to hold it. I hadn’t been able to grip anything that thin for years.”
Lewis also moved his leg up and down freely, stood with greater balance than he had in years, and used his right hand to shake again. Other patients were able to walk after being wheelchair bound for years, and could speak more clearly. The improvements may have been instant, yet one of the key intentions of the trial was how long they could last, and most had slowed by the time Lewis returned six months later for a second round.
“I’m convinced the second one was the placebo, but we don’t know yet. It certainly didn’t have as much of an effect,” he says. “But the first, yes. I am now convinced, convinced this is a disease that will have been cured in the next five or so years. I think this is it.”
When we meet six months on from his second treatment, Lewis still has improved movement, while he walks with a stick and talks with a very gentle slur. “See that?” he says, shaking my hand with his right. “Couldn’t do that a year ago…”
On his online biography, Lewis’s professional motto is: “If there’s a wrong there’s a remedy.”
He’s getting there.
The Search for a Miracle Cure is on Channel 4 on Thursday at 10pm
‘I cannot describe to you the pain. I thought I was going to faint’