Perhaps we should start by just what is encephalitis? What is that thing?

So infections circulating this system and in some people it breaches the blood brain barrier and mounts a direct infectious attack on the brain. And the second way that people can contract an encephalitis is through their own immune system going wrong and attacking the brain in error. So it's inflammation of the brain caused by infection or by a person's own immune system going rogue.

That's a nice sort of definition. Do we know why we get this blood brain barrier crossing sometimes? Are there multiple causes why that might happen?

Do we not understand that yet?

So the mechanisms are many and varied.

So changes to how people feel about themselves, changes in their personality, their emotions, their behaviours, changes with people's cognition. So the way people think and assess things and approach things. Epilepsy is another thing around about 30% of adults will go on to experience epilepsy post the acute stage and in children that increases to around about 50%.

So lots of difficulties. People might have physical difficulties, problems with their daily living. Almost everybody describes levels of fatigue so great that often people struggle to return to work and education.

So a whole range of outcomes that impact people's quality of life.

One particular area of the brain that might be more badly affected than others. Is encephalitis a whole brain thing or does sometimes, you know, might just particularly affect the speech and language areas, for example, or the motor areas?

So it can be focal, so concentrated in one specific area, as you mentioned. It could be multifocal, so lots of different specific areas, or it can be diffuse, large areas of the brain being affected. So it can vary and sometimes it varies depending upon the cause.

So, for example, in an acute disseminated encephalomyelitis, there are often large areas of the brain affected. In a herpes simplex, which is the cold sore virus, that particularly likes the areas, it's one of the few viruses that discriminates in terms of the areas of the brain that it likes to attack, but particularly likes the areas that are responsible for memory. So limbic system, temporal lobes, for example, are often frontal lobe injury as well.

So it can vary again depending on the cause, but it can be one small area, many small areas, or it can be diffuse.

And sometimes people in our world joke that new antibodies, which is one of the causes of autoimmune causes, that there's new antibodies being discovered every other week, which sometimes it feels like that there are, certainly since Joseph Dalmau discovered an MDA receptor in around 2000. And gosh, I'm trying to get my years right now. It feels like a short space of time, but I think it's probably longer than I think.

So around about 2016, 2017, that was a real moment of discovery, realising that these antibodies were occurring. And so we've discovered many more antibodies since then. So helping us understand some of the causes of encephalitis that were, to that point, often unknown.

And how do we treat it?

So in a herpes simplex encephalitis, you would give IV or intravenous acyclovir. And that has reduced the mortality or the death rate in that particular course from around about 80% down to 20%. But actually, as many listeners will know, when you get viruses, you're often, if you do go to your doctor, there's very little we can do about them.

It's, you know, go home, keep warm, drink plenty of water, you know, chicken broth, you know, and there's very little that we can do. But in that herpes virus family, we can give acyclovir. But otherwise, it is a hope that the person's immune system will win out.

There are more treatments available for some of the autoimmune causes, because they're ironically, what you're wanting to do is dampen down the immune system, because that's what is causing the problem. So first line therapies would be steroids, immunoglobulin intravenously, plasma exchange. And then if the patients are not getting better, or they're relapsing, then they go to second line treatments that are often used in cancer, such as rituximab and cyclophosphamide.

But interestingly, you mentioned prevention there. And that is a large part of our work at Encephalitis International. Because obviously, there are many causes of encephalitis that we can't do anything about.

We don't have a vaccine for things like the herpes simplex virus or the cold sore virus, so we can't stop it. But there are many causes that we do have vaccines for measles being one great case in point where we've got a huge drop in the numbers of vaccine uptake for measles around the world. And of course, many of those often children are then going on to die of encephalitis as a result.

So where vaccines are available, we are very much an organisation that promotes prevention of this condition as the gold standard. And many of the causes are vaccine preventable.

Are we talking tens of thousands?

But globally, we estimate around about 1 to 1.5 million cases a year. So that's three people every minute. And when I think of it like that, it doesn't feel so rare to me.

And in fact, the incidence of this condition is higher in many countries than bacterial meningitis and motor neurone disease, or as it's known in the US, ALS. So to us, it doesn't feel that rare.

And then in some cases, other people in the family having to give up their work in order to support the person that they care for. So it has a huge rippling effect, as do many brain injuries in terms of the impact beyond the person themselves.

Does that mean that diagnosis is difficult? Do people get missed because they roll up to GPs saying, oh, I've got a headache, or whatever, and they don't know what it is? How good are we at spotting this?

People become very sick very quickly, and they are admitted to hospital. So in those cases, I think a GP probably wouldn't see a person for those reasons. But almost certainly, they may see somebody who has a much longer onset.

So for example, in some of the autoimmune causes, people are describing feeling unwell over perhaps weeks, weeks or months prior to becoming absolutely very ill. And so in those cases, a GP may see somebody. In earlier this year, in February 2026, for World Encephalitis Day, we launched a campaign called FLAMES.

And it was very much meant to be in the same vein as the Act FAST for Stroke. So an acronym to help people recognise. And so FLAMES stands for flu-like symptoms, loss of consciousness, acute headache, memory problems, emotional or behavioural changes and seizures.

And that was our attempt really to identify or to help people identify the condition earlier. And that includes primary care practitioners, GPs, as well as acute attending physicians and something that could be used around the world. And we will be continuing to roll with that campaign.

It was incredibly successful. So yeah, watch this space on the FLAMES campaign for encephalitis.

How am I diagnosed? Is it a brain scan looking for information, blood tests, a combination of things?

Blood tests would be taken as well. And you're also hopefully looking for evidence of inflammation on scans, preferably MRI, but sometimes CT done. But again, it can be a mercurial condition.

Sometimes things don't show immediately and you may need repeat lumbar punctures or scanning a little bit later down the road. So again, it's about the timing that you do things as well sometimes. But yeah, effectively, you're looking for evidence of inflammation and also whether there's been any infection present or in blood or serum, you might be looking for some of those antibodies.

We've got high levels of these antibodies, so we know it's an autoimmune cause.

Are you there to kind of support sufferers and families and work with people? Are there ways that people can kind of connect and reach out for help?

But sometimes if you're a physiotherapist or an occupational therapist and you're supporting someone, you might not necessarily be familiar with this specific condition. So we offer a lot of support there. We raise awareness of the condition and our primary campaign vehicle for that is World Encephalitis Day on the 22nd of February every year.

And that's a global campaign. This year, we launched Flames with it and we're going to be doing a variation on that theme for 2027. We also do lots of mini campaigns as well, often around maybe vaccination or World Immunisation Day, we might run something.

So campaigns to raise awareness and then finally research, as you've mentioned before, we don't have huge amounts of money, so we're not able to fund significant research ourselves. But we do tend to seed fund, so offer small amounts of money, particularly in low to middle income countries where we can really kickstart something that's going to impact the death rates or the disability rates in those countries. So a little bit of money often in a low income country will go a lot further than it would if we gave it to somebody in the United States, for example.

And of course, we collaborate on research with academic institutions and our medical colleagues all around the world. So we're involved in lots of research studies, and that's often me talking about patient perspectives, making sure that the patient's voice is heard throughout the research studies and informs the research studies. And also my particular focus is on patient outcomes and their quality of life, because that's often quite at odds with the measures that are used for outcomes or quality of life.

They don't necessarily reflect the lived experience. And I think I've spent probably a long part of the last 26 years trying to communicate that to people, that just because you've measured something and it's given you this outcome with a measure that was never invented for encephalitis doesn't necessarily reflect the person's own lived experience or how they're experiencing their quality of life. They're often two very different things.

Yeah, it's nice to know whether you're dead or alive in six months. That is important. But more than that, isn't it?

We need to know how people can function and operate and what kind of level of independence they've got. And I guess we find out what outcomes are important to people by go ask them.

You know, I remember 26 years ago going into and forgive me, any anybody that's listening to this. But I remember going into some rehabilitation units 26 years ago, and you'd have some I don't know, gentleman who his life was probably drinking pints down the pub with his mates playing darts, that kind of thing. You know, being shown how to make fairy cakes or make a cup of tea, all important, but actually, that's not helping him return back to the life that was important to him or the goals that he has in mind.

So that's a listening to what's important to people and then helping them return to those goals that are important to them, not just the ones that we think are important for people.

Exactly. Really not going to be the case, is it?

well, listen, Ava, thank you ever so much.

You find the time to have a chat on the podcast. As I said, I will put some links underneath this. So do check out the work of Encephalitis International.

And I think that international bit is really important. And it's great to hear about the work that you're doing in those low middle income countries, as well as supporting all the people across the UK as well. Thanks very much.