Matt's Story: From curly kale to medical cannabis, how Michelin star chef Matt manages his MS

Can you tell us about your MS diagnosis, and how the condition affects your day-to-day life?

Sure, so I’ve got primary progressive MS.

I started to suffer symptoms probably about 10 years ago when I was a high-end, fine dining Chef, which was quite a full-on job. I was suffering from fatigue, balance issues, and some vision problems, and so I went to the doctor to see what was going on. 

MS was mentioned fairly early on, and the diagnosis came a little bit later.

Unfortunately, with primary progressive MS, there are few treatments and no cure, and because there were no treatments available at the time of my diagnosis, I was in a bit of a limbo really, and I didn't know what to do. 

I continued working until very recently with no treatments, and as the condition worsened, I started to find various things that I could do to help myself, mainly through nutrition and meditation. I looked at yoga and Qigong and various things but nutrition and meditation were the two that really helped and I continue to do to this day. Then, the cannabis came along.

Can you expand on the approaches you have previously tried to manage your MS symptoms?

Four years ago, I was taught transcendental meditation, and that's become a big part of my life, along with nutrition and mental wellbeing. Now I understand what MS is, and understand that it is a reaction to the environment that I was in, the conditions that I was in, and what I was doing to myself, my body was simply saying no. 

When I eventually listened to my body, the message was quite clear:  I wasn't giving it the fuel that it needed, and I wasn't looking after it well. By feeding myself better and not living on processed foods and sugars and carbohydrates constantly, things changed very quickly. Now I think I've got quite a good knowledge of all the things that I need to put in place to actually live a decent life.

There is only one DMT (disease modifying drug) that’s available for primary Progressive MS, which is called Ocrevus. It's been available for a couple of years, and it's been in testing for a long time, and I was always ‘in line’ to receive it - but, I still haven’t received it yet.

Recently, I have started pushing a lot more for my doctors to pay a bit more attention because over the past 10 years, I feel as if I've kind of slipped through the net, and I need some help now.  I've just been made redundant, and I was kind of forced into an early retirement, and benefits are minimal, so, life is a bit of a struggle. 

Why did you decide to try cannabis?

The hospitality, and chef industry is quite rife with drug abuse and alcohol abuse, and so cannabis was never far away really - the illicit form anyway. And, after the diagnosis, people did start to  mention it to me and ask if I’d considered it.

From a medical point of view in my own journey through MS, it was quite a natural decision to use cannabis as a form of relief and that's really what it is - it's just a relief.  There are lots of things I can do to help my condition long-term, but they're all kind of lifestyle things like diet, exercise, mental health awareness, and wellness. They are brilliant, a game changer. But, when I'm having a bad day they don't really help. 

All the curly kale in the world isn't going to help me when my legs are spasming, and I've got an MS hug, and I'm just in pain. That's when cannabis is really helpful because it’s instant -  it is the only instant thing that I have to help still to this day. 

I started to use cannabis to manage my symptoms in the absence of any medical treatments, and that's really been my story all through the 10 years of my illness. I worked incredibly long hours, and with MS it can be triggered by heat, and stress, and physical exertion. All three of those were a regular part of my daily life. 

When I finished work at the end of the night it became my ritual to unwind and relax, and to take cannabis. The symptoms I suffer with, the fatigue, the muscle spasms, the anxiety, depression, and insomnia as well, all those things are worse at night.  

I was finding that through my job I was occupied, and my mind was constantly busy, and you just tend to get through the day, But, at the end of the night, when I stopped and should be sitting down and relaxing, that's when the most severe pain would be. So I started to use cannabis too just to settle down my mind, rest, and hopefully get some sleep before starting the process again the next day.

How, and when, did you find out medical cannabis is a legal treatment option for patients with conditions like MS in the UK?

In 2019, I turned a corner with my health and started to discover things like nutrition and mental wellness, through necessity really, because I was deteriorating quite rapidly. I had huge success with that, and it was also at that time that I started to research more into cannabis, and it was at that time that when the legalisation for medical use came about.

It was also at that time that I started to communicate more with my doctors about my illicit use of cannabis - hoping that they would steer me in the legal direction, and I would get some help. But that never happened. My Neurologist’s response to me stating that cannabis does actually help, was ‘you're clutching at straws’. But I knew it helped, and I knew my NHS doctors weren’t going to. 

I found it incredibly frustrating, really not wanting to be a criminal and not wanting to go down that route, but knowing that cannabis is of benefit to people with my condition. After some research, I eventually started to come across private medical cannabis clinics. It was actually after a chance conversation with a friend of my sister whose son is legally prescribed cannabis for his conditions, that I found out it was accessible.

Releaf wasn’t the first clinic I came across, there were a few I was in contact with, but Releaf seemed to be the one that offered the best service for my needs. So that’s who I went with. In turn, I’m no longer in those circles, and that illicit world of drugs is no longer part of my life, and I don’t want it to be. I’ve moved on from that, and now I can manage my symptoms in a more professional way. 

Since becoming a Releaf patient, how is life different?

There have been a few differences, really. 

Firstly, I’ve noticed, the consistency of the product is more tailor-made or tailor-suited to my condition. Before coming to Releaf, I had to rely on whatever I could get my hands on, or whatever a mate had at the time. Now, it's more tailor-made to what I need, it's consistent and effective.

I’ve also noticed differences when dealing with clinical staff. The people I've met so far through Releaf have been very professional, and very knowledgeable, and I wish my doctors listened as much as the two doctors at Releaf I've spoken to, so far, do.

In my last consultation, I stated that I would prefer something less heavy during the day so that I can be more active and present of mind. But in the evening, I also suffer with increased pain in the evening and insomnia so something a little more sedative would work best, and we're trying to work towards that.

I’ve been prescribed medical cannabis flower and cannabis oil now. I mostly use the flower during the day, and the oils more in the evening because they come on slower, so I can fall asleep quite naturally and gradually, but it will help me stay asleep. 

I think they are both working well, they’re both quite predictable, but they are quite heavy, so I haven’t quite hit the sweet spot just yet. I would like to try a few different things and try to find something that works best for me in something that's quite uplifting for the daytime and something that's quite sedative for the evening, so I’m hoping over time we get it just right, and I know I can speak to them about this during my next consultation. 

How have those around you responded to you becoming a legal medical cannabis patient?

I've always been open about my illicit use of cannabis, and it was never something I was ashamed of. My family and friends were aware of it, because it’s not something I’ve ever really hidden, and so they were very supportive and understanding when I decided to take the legal route. 

As the benefits for my health have become more obvious, I've tried to educate my family, and friends about it and why I use cannabis, and, now I’m a legal patient, I’m even more open to discussions with the public if they wanted to approach me about the aroma or whatever. 

When I was accepted with Releaf and everything was all finalised, I felt like shouting it from the rooftops and telling every single person I could possibly think of, that this is a thing you can do. 

And, what about within the MS community, is there anything you’d like to share in particular?

I think, to be honest, I've kind of shied away from the MS community. Through the early stages and my early diagnosis it was a little bit of a struggle mentally, and the lack of information that was coming to me was quite scary and damaging.

I was constantly looking at Google and YouTube videos and trying to do my own research into MS, and that’s not a good way to research something like that. Reaching out to social media groups in particular didn’t feel very helpful because 90% of the discussions were about treatments, and it almost started to seem like a competition of who could try the most treatments while I still had nothing.

But now, I'm looking at sharing my experiences, finding new skills and moving in a different direction. I think I’ve been on a slightly spiritual journey, and giving something back is quite key to that, so I think I should get a bit more involved in the community, and educate people about nutrition in particular, but also cannabis.

I actually reached out to MS-UK yesterday, after I looked at their website because they seem to cover a lot of the subjects that I've also discovered to be beneficial to me apart from one main one: nutrition, so I wanted to introduce myself to the community and see how I could help. Now I’ve found out they are working with Releaf and holding a Webinar to speak about how medical cannabis can help, it’s something I want to be involved in even more. 

With regard to the future, what are you hoping for from the coming months, and how your treatment might impact your lifestyle?

I'm at a crossroads in my life, really. I spent 30 years as a chef, and that comes with a lot of knowledge. I worked up to a high level, I used to work with Tom Kerridge and Phil Howard - both Michelin Star Chefs, and now that's come to an end as of March. 

But, I can’t allow all that knowledge to go to waste, and with nutrition being so beneficial to me, it has got to be the direction to take that knowledge in and give something back, and so I'm now studying a course in nutrition, and I'm trying to get a degree in that. 

I’m also moving to a new house in three months time with a stunning garden and a lovely summer house, so I will have a little retreat that I can go to and relax, and do my coursework and studies and meditation and exercises in beautiful surroundings, and I'm hopeful the future is looking a lot better. 

I think my life could be quite rewarding, and medical cannabis will play a part in that, keeping everything relaxed and centred and grounded, and just moving forward really.