NI woman 'honoured' to take part in world-first MS trial

Caroline Millar, 61, from Ballyclare has been on the aptly named ChariotMS trial.

The trial is testing whether cladribine (Mavenclad®), an already licensed disease modifying therapy (DMT) for highly active relapsing MS, can slow down upper limb disability worsening in people with advanced MS.

MS is a condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance.

It's a lifelong condition that can sometimes cause serious disability, although it can occasionally be mild.

Caroline, who was diagnosed with MS when she was 25, said: “I’ve been following the development of trials like ChariotMS for years and this felt like my chance to take part in a clinical trial.

“I hope the trial will find a treatment that can help maintain upper limb movement.

"For people like me who are wheelchair users, upper limb movement is everything, because if I lose that, I lose my independence.

"I have always loved and been active in sport, I coach others and I volunteer for the MS Society.

"I need my upper body to maintain my life, my independence, my interests and my hobbies.”

As well as being an active volunteer with the MS Society, Caroline owned her own health and safety training company, is a champion of mental health issues for people living with MS and also coaches athletes with disabilities.

She recently picked up ‘Disability Coach of the Year’ at a Sports NI awards ceremony.

Caroline has been on the trial at Belfast City Hospital since June 2022, and will get her second dose of the drug in September and said she hasn’t experienced any side effects.

She added: “The way I looked at it, a trial like this could well help me directly but it will also help the people with MS coming behind me.

“Being on a trial has also meant more regular check-ups and MRIs which has been great too.

"My cup is always overflowing, it isn’t just full.

"For me trials like this are win-win-win. I feel honoured to have been selected.”

To date, clinical trials for MS have not included people who are reliant on a wheelchair, and drugs have only been licensed if they improve walking ability.

This means there are currently no DMTs available for the 35-40 per cent of people with MS who need significant help walking.

Consultant neurologist Dr Stella Hughes said: “It has been a privilege for us in Belfast to be a recruiting site for ChariotMS.

"We are delighted to be able to give people with progressive MS across NI the opportunity to participate in this clinical trial.

"People with more advanced MS often feel forgotten about as treatments are mostly geared towards early, relapsing forms of MS.

"In this trial, potential participants are those who cannot walk more than 20 meters with two crutches, or those who are unable to walk at all.

"The aim is to measure whether the trial medication helps to maintain arm and hand function, by comparing with placebo.

"We hope that this clinical trial will lead to a licensed therapy to help preserve arm function in people with MS.”

MS Nurse Fiona Magill added: “ChariotMS is great opportunity for people with progressive MS in Northern Ireland to become involved in clinical trials. Our aim is to recruit 10 participants from here.

"To date we have successfully recruited six participants leaving four participants yet to find.

"As with any clinical trials, there is strict eligibility criteria.

"Most importantly participants must have progressive MS, not on a disease modifying therapy and they must have noticed deterioration in upper limb function over this past two years.

"If you or someone you know meets this basic criteria, and would like to be considered for in depth screening we would love to hear from you.

"If you are successful for a screening visit, you will be required to undertake a number of different tests and tasks in the presence of the MS Research Team in Belfast City Hospital.

"For further information please speak to your local MS Nursing team or Consultant Neurologist, who can forward your name.“

David Galloway, director of MS Society NI said: “More than 130,000 people live with MS in the UK, more than 5,000 in Northern Ireland. “Those with more advanced forms can experience difficulty with walking, relying on mobility aids like walking sticks and wheelchairs to help.

"But as MS progresses, many go on to experience problems with their hand and arm function too – and treatment options start to disappear.

“Preserving hand and arm function would unquestionably improve the quality of life of people with MS, helping them to live more independent lives.”

There are 20 ChariotMS trial centres opening across the UK.

People who think they might be eligible should get in touch with their doctor about a referral to their local centre. Visit mssociety.org.uk/chariot for more information.