It was in 1998 - 21 years ago - that I first came into contact with the Encephalitis Society.

I had just returned from Vietnam and was publishing papers on Japanese encephalitis, when I received a call from Elaine Dowell. She had recently co-founded the Encephalitis Support Group (as it then was) from a back bedroom, and was looking for help.

At the time, there was no one in the UK working on encephalitis in terms of research, and hardly anyone had even heard of the disease. So I agreed to get involved, joining the Scientific Advisory Panel (and later becoming its chair). A few months after joining I was proudly presenting some rather esoteric research from Vietnam at the Group’s annual meeting…

“Yeah, but how is that gunna help people like me?” interrupted a patient on the front row who was disinhibited following his brain injury.

“You are right!” I thought. “We are not really doing anything for people in the UK.” It was a pivotal moment that changed my career and led eventually to a multi-million pound research programme on brain infections in the UK. The Encephalitis Society has been an essential partner in this research led by the Liverpool Brain Infections Group. Patient and Public Involvement in research is now very trendy, but together we have been doing it for years, benefiting both sides and ultimately producing real impact on medical care.

Professor Tom Solomon speaking at the Encephalitis Society's 25th birthday party in London, 2019

My work with the Society over the past 21 years, has led to many other adventures.  For example, Ava Easton and the team roped me into running the 2010 London marathon. I won a Guinness World Record for the fastest marathon by someone dressed as a doctor. We raised over £20,000 for the Encephalitis Society and generated a lot of interest, including from the BBC who interviewed me on The One Show, and at the starting line, and again midway through the race.

It also gave birth to my Twitter handle: @runningmadprof

When someone later beat my time of 4:21:09, this led to me becoming a two-time Guinness World Record holder. The Encephalitis Society had just announced the first ever World Encephalitis Day in 2014 and we needed something special to kick things off. So we enlisted the support of Liverpool University staff and students plus patients and the public to create the “world’s biggest brain” and win the record for the largest organ made of people, 678 in total. Our funny video is still on YouTube. World Encephalitis Day has grown year on year. Today two in ten people have heard of encephalitis, when we started it was more like two in a thousand.

Professor Solomon fresh from his world record with Sir Richard Branson

The annual Encephalitis Conference is another example of how the Encephalitis Society has grown from its humble roots.

Initially this was a small meeting, which was not focused on patients, the public or professionals, and did not really work. Ava and I chatted about whether we should just abandon it or develop it into something bigger and better. Ava, to her credit, opted for the latter, and it is now a key event in the calendar, bringing the UK encephalitis research community together, and attracting scientists from overseas. The 2019 Conference at the Royal College of Physicians in London was our biggest and best conference. Encephalitis Society has certainly helped in galvanising research in the UK and internationally.

The relationship continues to grow and evolve, as we address new challenges together. I was delighted and honoured to be made recently President of the Society, and that gives scope for us to work together in new ways. We still need better and quicker diagnosis and treatment. We must remain vigilant about responding to emerging threats such as Zika virus. But even old vaccine preventable diseases, such as measles, are growing in importance because of the anti-vaxxers.

There is still much work to do. However, I like to think that if the chap in the front row asked me the same question today, I could give him a much better answer!

Follow @RunningMadProf

Dr Ava Easton presented Professor Solomon with an award at the Encephalitis Conference for his support over the years