"Joining a trial was the best decision I ever made for my understanding of my own MS"
Mark was diagnosed with relapsing remitting MS in 2005 and moved into secondary progressive MS a decade later. He joined the MS-STAT2 trial in 2019, and although the results from the trial were not what everyone was hoping for, he recounts his experience on the trial as wholly positive.
I recall the day like it was yesterday, when my consultant confirmed that my MS had shifted to secondary progressive. "I’m sorry Mark, but as you know, disease modifying treatments (DMTs) are off the table for you right now. Have you ever considered signing up for a trial as I think it’d be right up your street?"
It’s fair to say that my consultant had the measure of me, and we’d developed a very straight talking ‘tell me like it is’ style relationship over the years. I’m that person that always wants to know as much information as possible, especially as living with MS is so unpredictable. And although I cannot control what the future may hold, being armed with expert information informs my life choices and fuels my optimism and positivity.
Taking the leap
I’d not considered joining a trial up until this point, I think in part that’s because committing to a trial felt a bit like admitting to myself and more openly to others that my MS was now progressive, and that did not chime well with me. But my consultant was confident that the structure and exposure to personalised information that would come from being on a long-term trial would actually do the exact opposite for me, so I trusted his experience, and he was right.
I’d actually read quite a bit about the MS-STAT2 trial in MS Matters magazine and was intrigued by how statins might play a part in slowing progression. And although I was not a medication resistor, I was more at ease with the notion of trialling a tried and tested medication like Simvastatin. So I bit the bullet and put my name down.
Seeing my MS in a new light
So, roll on spring 2019, I signed up and got the call to visit UCL in Queen Square London for my first trial appointment. It was a bit of a travel for me from sunny Suffolk, but I actually rather enjoyed the idea of meeting a new team of experts. And what an incredible team they are. They were welcoming, upbeat, positive, and set me at ease.
It was clear from the get-go that their determination to find answers and solutions for people living with progressive MS was second to none.
They were pleased to hear that I’m happy with blood tests and at peace with multiple MRIs (odd as it sounds, I actually fall asleep in the scanner!), and I was pleased that they were more than happy to share feedback with me in as much detail as I saw fit. This was the penny-drop moment for me, as I quickly realised that being on a trial would give me the best possible chance to see what was going on inside my body on a far more regular basis.
This information would become my roadmap for how to get the best out of my health. With repeated visits to UCL over the course of the trial, I got to see why my symptoms play out in the way that they do. It was fascinating seeing how the lesions in my spine related to the challenges that I have with my legs, and it was comforting to see how the relatively gentle pattern of brain lesions was kind to my cognition. I even got to venture into the control room to see a 3D walkaround of my brain and pick the brains of the doctors, excuse the pun.
All of this insight was worth its weight in gold to me as I could reframe my MS by being equipped with as much information as possible, and there’s nothing like seeing rather than just hearing it. And I never felt rushed either, the trial team were brilliant and so generous with their time, which is great for someone like me… Mr Questions.
Looking ahead
The MS-STAT2 trial ran for 5 years and I enjoyed my experience so much that I signed up for the extended trial. I went into the trial with my eyes open, knowing that I might not personally benefit from the outcome if I was either in the placebo (dummy drug) group, or if the results of the trial were not as hoped.
When the news came that the medication trialled had not been successful in slowing progression, of course I was disappointed for the greater good, but I would not change my experience of being on the trial for one minute. It was the best decision I ever made for my understanding of my own MS, and it fills me with hope for the future.
In fact, I’ve registered my interest for the Octopus trial now, so I’m hoping to be able to join Octopus in the future!
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