Caroline Wyatt talks to Mark Lewis about his search for a miracle cure for MS
The BBC journalist meets the high-flying lawyer who, like her, refuses to give in to the illness
Mark Lewis likes to win. Perhaps he even lives to win. The 52-year-old “super-lawyer” certainly relished squaring up to News Corp, representing the family of Milly Dowler and many other victims of the News of the World phone-hacking scandal. His successful fight led to the closure of the paper and the award of record damages to his clients. But Mark’s latest battle is for himself, and his health, against the multiple sclerosis that is slowly shutting down his body, nerve by nerve. “My life is like an egg timer that the sand’s dripping through – and the sand’s nearly finished,” is how he describes it.
That’s why he travelled with his partner Mandy and Channel 4 cameras to the Hadassah Medical Center in Jerusalem this summer to take part in a trial of a new stem-cell treatment, testing the effectiveness of injecting stem cells directly into the cerebrospinal fluid that surrounds the brain and spinal cord, as opposed to a vein.
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His early symptoms, at the age of 23, included visual disturbances (“like looking through an ice-cube”) and extreme fatigue. Aged 24, just as his then (now ex) wife was pregnant with the first of his four daughters, he noticed what felt like a bee sting on his wrist. He was eventually sent to a neurologist. After a brain scan, the father-to-be was told brusquely that he had MS. Over the years Mark’s condition has worsened. By 2004, his difficulties with walking meant that he needed a disabled badge for his car so he could park near his destination. However, passers-by kept ringing the council to report him as a fraudster “because I didn’t look disabled. People expect you to dribble when you have MS.” He doesn’t dribble, but due to the progression of his illness, the veteran and vintage car fanatic can no longer drive.
As we sit and talk at his London office, our walking sticks rest against opposite walls. Mark’s right hand has lost so much function that he can no longer put on his socks on his own, meaning that Mandy, his partner for the past two years, is also in effect his carer, a relationship at the heart of the documentary.
“I come across as a grumpy Victor Meldrew – without the charm,” Mark smiles. “You see me coping – badly – with disability.”
Mark’s journey has been similar to my own. I travelled abroad for treatment earlier this year in the hope of halting the accelerating damage caused by my relapsing-remitting MS, which first appeared not long after I turned 25. In January, just ahead of my 50th birthday, I went to Clinica Ruiz in Puebla, Mexico for a stem-cell transplant known as HSCT, a higher-risk, more radical treatment that’s being used for MS more often now after proving successful for many patients with blood cancers. It involved having four rounds of chemotherapy to kill off the malfunctioning T and B cells, followed by an infusion into the veins of my own stem cells to shorten the length of time I had to spend without a working immune system.
Nine months later, I’m still focusing on regaining my strength. After my transplant, I was exhausted but full of hope because after the chemotherapy, and for around two months, I could feel that the MS was no longer attacking me. It appeared to have gone into remission, along with much of the pain in my eyes, joints, hands and feet.
Best of all, my mind felt sharp for the first time in years without the brain fog that had plagued it for so long. But in April, I was struck down with the most severe migraines I’ve ever experienced as the MS crept back, bringing with it all the old symptoms and, worst of all, the cognitive dysfunction. My concentration and ability to focus dwindled again, and while the migraines no longer arrive daily, they return with dismaying frequency.
I’m often told, though, that I “look very well”. Giving up alcohol and stressful, sometimes 18-hour working days, as well as prioritising sleep, walking and yoga, has probably helped my overall health. And I remain an optimist. My new immune system will take until around the end of 2018 to build up to full strength. Perhaps by then, it will be able to prevent fresh and irreversible damage to my nerves until a permanent cure is found.
Mark, too, lives in hope. In the documentary, we watch as doctors use a four-inch needle to inject Mark’s stem cells back into his cerebrospinal fluid. Within two hours of the first injection there’s an almost miraculous improvement in his right hand and leg. He’s in tears as he telephones the friend who helped him take part in the trial. Sensation returns to his hand and, triumphantly, he shows that he can grip a bottle of water again. Yet now, many of those initial improvements have disappeared, although the bee sting pain in his right wrist has diminished.
As I leave his office, we rather shakily shake hands. “The day after the first stem-cell injection, I had a 60 percent improvement. If the trial is successful, I’ll keep on going with it,” he tells me.
Mark strikes me as both brave and bolshy, but does he ever have days when he’s tempted to give up hope? He admits that he does have moments of self-pity: that sense of “why me?” Yet “if I were to die tomorrow, I’ve closed down the News of the World, I won the biggest settlement ever, so I can say I’ve had an impact. I’ve done something with my life,” he says with absolute certainty. “But I’m sure MS will be cured.”
I hope he’s right.
The Search for a Miracle Cure is on Thursday 23rd November at 10pm on Channel 4