A CURE FOR MS ON THE HORIZON?
Media lawyer Mark Lewis optimistic after participating in clinical trial
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, Lewis, best known as the media lawyer who took on Rupert Murdoch over the newspaper phone-hacking scandal, was passed on for a second opinion. Then he was 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. “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 later, 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 an estimated 2.5 million 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 cane. Along with mobility issues, 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. “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.”
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 groundbreaking clinical trial that could offer a cure for MS — as well as provide 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.
Lewis’s trips to Jerusalem to take part in the trial were filmed for a British documentary, The Search for a Miracle Cure.
“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 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. The hospital was ready for a full trial nine years later, and sought markedly strongminded patients to maximize the chances of long-term success. Lewis was a shoo-in.
With the incredibly patient Mandy, 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 (10.16-cm) 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 says.
But 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.
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.”