50 - Chrissi Kelly - AbScent & Parosmia

Episode 50 of the Long Covid Podcast is a chat with Chrissi Kelly, founder of the UK charity AbScent, a charity which helps people with smell & taste loss or change. We chat about the charity, how it can help people as well as some helpful tips for those experiencing this symptom.

Abscent website
AbScent Network
Youtube channel
Huel (UK)

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(music - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  0:00  
Hello, and welcome to this episode of the long COVID Podcast. I am delighted to introduce my guest today, Chrissi Kelly, who is the founder of UK charity AbScent, which supports those with smell loss or parosmia, I think if that's the correct pronunciation? So this is a really interesting topic that I'm looking forward to getting into. So welcome to the podcast.

Chrissi Kelly  0:24  
Thank you very much for having me.

Jackie Baxter  0:26  
So I'm delighted to have you here. So to start with, would you just introduce yourself a little bit, and I guess what it is that you do?

Chrissi Kelly  0:34  
My name is Chrissi Kelly, and I'm the founder of absent, we got our charitable status in May of 2019. So well, in time for the pandemic. The seed for that charity began with a Facebook group back in 2015. And I started that after I lost my own sense of smell in 2012. So I had smell loss in 2012, and then sort of looked around for ways to help myself, I discovered something called smell training. And then in 2015, I started a small Facebook group for smell training. And that grew and grew. And in 2016, I started to make it official. So we were already to go in May of 2019, with a website, and the sniff smell training app, and a questionnaire that we had embedded in our website. So there we were, just as the pandemic was just getting going. So it's been quite a ride since then. We started, you know, back in when the pandemic was just getting going in February of 2020. We had 1500 members, and now we have something like 85,000. So we've grown rather a lot, just like the many people who've, who now find themselves with long COVID. So,

Jackie Baxter  1:58  
Yeah, that is a huge number, isn't it? 

Chrissi Kelly  2:01  
Yeah. 

Jackie Baxter  2:01  
I mean, I was thinking about this earlier. And until it became kind of a thing with COVID, I had never realized it was actually possible to lose your sense of taste and smell. But you were - it obviously happened to you well before COVID, and your charity was actually set up and up and running before COVID, wasn't it? 

Chrissi Kelly  2:22  
That's right. And of course there was at that time, before the pandemic, there was, as you say, very little awareness about smell, it's the disregarded sense. You know, it just doesn't get the recognition that it deserves, as a bellwether for human health, for instance. Yeah, and just getting going with explaining to people how important it is to give credence to your sense of smell to watch what's happening. And you know, to help us understand what's going on. 

There are of course, many ways to lose the sense of smell. And a virus is just one of them. Probably the largest group of people with smell loss have got some sort of nasal disease. And that would include things like polyps, and then also we have people who are allergic, have allergies, seasonal allergies, that can be a problem, head injury, TBI, where there is a coup contrecoup blow to the head, which makes the brain wobble and then severs the nerves. So those are some common ways to lose your sense of smell. 

But I will say that, you know, in the early days of the Facebook group, we would have people that would join us, you know, who would say Oh, I lost my sense of smell three years ago, I didn't even know it had a name. And one of the first things that made me realize just how important smell was going to be with COVID, was when I was out walking my dogs. This was in March, already at the end of March 2020. And a neighbor of mine stopped me and said, you run a charity? Don't you - for people who have anosmia? And I thought wow, you know, when members of the public know a word like that, then you know that the word's getting out?

Jackie Baxter  4:08  
Yeah, yeah, that's a really good point. This, you know, raising awareness of all sorts of things that, you know, they existed before COVID and long COVID. But I guess maybe not quite in the same numbers. 

So I asked this question before we started recording, actually, and you said to me, maybe you should ask that one while we're actually recording. So - taste and smell. Is it possible to lose one without the other? I mean, they're linked, but so how linked are they and what are we talking about here? Are we talking about both?

Chrissi Kelly  4:42  
So two answers to that question, because there are two common uses of the word taste. So let me explain both of them to you and how they work together. So we have a sense of smell. And that sense of smell comes from the olfactory nerve that's in our nose. That's easy to understand. We also have gustation and gustation is served by a nerve that serves the mouth. And that means that the tongue and the inside of the mouth detect salty, sweet, sour, bitter, and umami through receptors. And it's important to remember that those receptors are activated by things that are soluble in liquids, that is to say, saliva. So that's gustation. Now colloquially, we call that taste. I like to call it true taste, just to remind people that we're talking about salty, sweet, sour, bitter, and umami. 

The problem arises when we start using the words taste and flavor interchangeably. Now, flavor would be described as the brain putting together information from the olfactory nerve and the gustatory nerve. In other words, what you experience inside your mouth, salty, sour, sweet, bitter into money, and a smell. And when you swallow, and the muscles in your throat constrict, send the food down, they also pump a little bit of air up, that goes up through the retro nasal passageways - it's called up to the place high in the olfactory cleft, where the olfactory epithelium is and where it can work its magic by picking up volatile molecules on olfactory receptors. So that experience of flavor, which is the coming together of olfaction, and gustation - smell, and true taste, that gives you that moment, that wonderful moment when you realize it's a beautifully ripe strawberry. 

Now, because that action happens in the mouth, we confuse flavor and taste. So when when you're in a restaurant, you say, Oh, this dinner is delicious. And it's got really good taste. This tastes fabulous. You're not saying it has fabulous qualities of salty, sour, sweet, bitter, and umami. You're saying, Wow, the whole experience is just wonderful. And so there is therefore a confusion about the word taste and smell. If you ask me about whether or not COVID effects olfaction and gustation, the answer to both of those questions is yes. We know that in the earlier cases of the - in the beginning of the pandemic, there seemed to be a lot more reported loss of gustation, and you may have seen clips on YouTube, of people eating mouthfuls of the hottest imaginable chili peppers. That was explaining or that was demonstrating that there were there was also an impairment of the trigeminal nerve. And the trigeminal nerve is the so called pain sensor. That's the one that alerts you - for instance, when you eat chili, when you breathe in ammonia, if you taste ginger, the warming sensation of that - peppercorns, the tingling sensation, menthol, if you have Vicks Vapor Rub, so that's a sort of third channel of a way for us to experience food. And that also was showing impairment with COVID. So you might have seen people on YouTube, eating hot chili peppers, you might have seen people drinking straight vinegar and not minding. So there were impairments to all three of these nerves. And that now we see much less of that than we did. So you know, as we all know, the virus is mutating and evolving. And it just may be, and we don't really have all the evidence in yet. But it may well be that gustation and trigeminal function are less affected by COVID now than it used to be.

Jackie Baxter  8:46  
That is absolutely fascinating. I had not realized how many different nerves and different bits were involved in what to me, until now weould've assumed one very simple thing. It just tastes, but it doesn't just taste - it's a lot more complicated than that.

Chrissi Kelly  9:06  
It's a whole experience. That's right, 

Jackie Baxter  9:08  
That's actually blown my mind a little bit. 

Chrissi Kelly  9:11  
Next time you read a hot curry, think about that. 

Jackie Baxter  9:14  
I'm just trying to work my head around this. So would it be possible to lose one without the other?

Chrissi Kelly  9:20  
I would say in general not I would say, you know, first and foremost, we have olfactory loss. And then sometimes there's gustatory loss and trigeminal impairment. So like I said, we saw a lot more of all three together in the beginning. But now, most people mention olfactory loss, and occasionally they'll talk about salty and sweet, you know, sweets, or they might say everything tastes salty, or I can't taste sweet. But, you know, we have so little, you know, we don't engage with the gustatory sense. You know, we don't sort of spend a lot of time thinking about whether things taste sweet or salty. So, you know, while there's very little known about the sense of smell, or not very little, but relatively little compared to vision and hearing - gustatory, that's even less well known. 

So, you know, a lot of research is going on about that now. And, you know, we'll find out more in the future. But it can be really difficult even for people who know about all of these things. I mean, I've got had colleagues who have lost their sense of smell and their sense of true taste, who say, yes, but that's really hard to describe, you know, I just don't know how to describe it. And that's, of course, something that we hear in our patient groups all the time, the frustration of not being able to describe what's happening to them. And you know, that this is a, in most cultures, there's not, there are not very many good words to describe smell, you know, we're always saying things like, well, it smells like an orange. But I mean, aside from a couple of words, like fragrant and musty, we don't really have that many words to describe the character of smells. So there are problems in communicating what the problem is. And we talk about that a lot, also in the patient groups. Frustration with that.

Jackie Baxter  11:20  
Yeah, I mean, I've noticed it kind of across the board with my symptoms, with long COVID, actually, that it is quite difficult to describe something that is new to you that you've never really experienced before. And you can tell that there's something wrong, but you can't often quite describe what it is or what it feels like, unless you hear somebody else describe it. And you go, Oh, yeah, yeah, that's what I'm feeling. 

Chrissi Kelly  11:47  
Yeah. 

Jackie Baxter  11:47  
But often it takes that doesn't it, you know, I sort of describe feelings as, as weird, somehow, because I just can't quite put my finger on what it is.

Chrissi Kelly  11:56  
And of course, that is the value of peer support. You know, that's why it's so vital that people who are experiencing this new thing can get together, talk about it, and kind of lay it all out on the table with a lot of post it notes, you know, like, what are we actually seeing here? And let everyone have their say, and, yeah, that's just a really, really important aspect of getting to grips with something new like this.

Jackie Baxter  12:23  
Yeah, yeah, definitely. And yeah, you touched on it, I think a second ago, you were talking about changes in taste and smell as well as loss. Because I've definitely noticed on sort of support groups where people have said, Oh, you know, everything tastes horrible. I'm smelling cigarette smoke, even though there's nobody who's smoking, things like that,

Chrissi Kelly  12:46  
What you've described are called qualitative changes to the sense of smell. So just to clarify, when we talk about smell impairments, we can talk about a quantitative loss, that is to say, just an overall diminishment of the sense of smell. Or we can talk about a qualitative change. So that means that you smell a cup of coffee, and instead of smelling like the lovely beverage that you like to have every day, it smells like sewage. Now, within the qualitative changes, there are two that are described. And a third, which I will describe to you a little bit, which is something that we have come up with in our own research. 

So the two widely recognized qualitative changes are Parosmia. That's where things start to smell, mostly unpleasant, although very, very rarely, you'll have someone who describes it as being a pleasant kind of sensation. But mostly, it's disgusting. And that is, sometimes these smells provoke such profound disgust that people can't eat. And I'd like to talk about that a little bit later, because that's really important for long COVID. The second qualitative change that is recognized is called Phantaosmia. And unlike Parosmia, which is triggered by a thing that you would have on the table in front of you, Phantosmia is something that happens without a trigger. So I think you could probably say it's a bit like tinnitus, in that, you know, with tinnitus, you hear noise, but it's coming from inside your head, it's not happening in the environment around you. So Phantosmia is untriggered, Parosmia is triggered. 

Now something that we noticed in our patient groups and we were noticing this actually long before COVID, is that people have something that we call in our group, a smell lock. And what happens is you would be you would smell something and typically that would be something like laundry detergent or lemon scented washing up liquid, something like that. And then you get that smell in your nose, and then you can't stop smelling it, you smell it for all day or maybe a couple of days. And what you can see happening is you start with a triggered response. In other words, you smell the laundry detergent, and you think ughh that smells terrible, and then over a period of time, it becomes a perception that is un-triggered. So it starts triggered, and then it goes on to become un-triggered. And then that is makes it neither Parosmia nor Phantosmia. And so Simon Gain who is a trustee of AbScent and a Rhinologist, and very experienced in this field, he has called that olfactory perseveration, meaning that it's a reaction perception that persists over time. That's what perseveration is. 

So yes, there are a number of kind of weird ways that you experience smell, if you've got qualitative changes. We do suspect that people who have Parosmia are experiencing an aberrant regeneration of the nerves. That is to say the nerves are trying to regenerate. But they're just not doing a very good job yet, they haven't you know, if you imagine in the telephone exchange, you tear out all of the lines, and then you're trying to stuff them back into random holes. And then sometimes you make bad connections. And we think that's what's happening. There is also if you look at the statistics, people who experience Parosmia have slightly better outcomes than people who only experience Hyposmia. But that doesn't mean that people who have Hyposmia will not recover, it just means that their recovery is happening in a more organized way, more slowly,

Jackie Baxter  16:54  
Right. And I guess that's where this idea of patience comes in that we're all so bad at.

Chrissi Kelly  17:00  
Like they call it patience for a reason. I wanted to go back to this talking about Parosmia and the disgust over food and recovery from Long COVID. Because that can be really, really important thing. And anyone who's listening to this program who's experiencing Parosmia and Long COVID needs to keep an eye open to this. If you're recovering, you need good nutrition. And with Parosmia, so many foods are just off the table. And that includes high protein foods, because these foods often contain the aroma compounds that are most noxious to people with Parosmia. So they end up by excluding protein from their diet. And, you know, all kinds of vegetables and fruits are also eliminated. And that leaves them with a very reduced selection of foods that they can use, and many of them are more bland carbohydrate-y foods that don't deliver much in the way of vitamins and minerals. 

So if anybody is experiencing that, we recommend meal replacement drinks. And I'd also like to say, do beware, this is not the same as the kind of protein shakes that you would buy a health food store for people that are weight training, for instance, that's not the same thing. And you want to avoid those - that's too much protein without all the other things that go with it. So if you do need to fall back on meal replacement drinks, make sure that you get the kind that are recommended at the pharmacy, for instance, the kinds of things that you might give to someone who was recovering from surgery on their mouth and meant that they couldn't swallow food. It's got to be a more complete kind of drink. So do take that up with a pharmacist who will be able to help you get the right kind of meal replacement drink.

Jackie Baxter  18:57  
Yeah, that's a really good idea actually, because it's a way of getting in all of your food groups and the benefits from them yet but without having to put the food on the plate in the same way I guess, which I guess is potentially triggering.

Chrissi Kelly  19:10  
And there are a number of meal replacement drinks that you can buy dry that you mix up as an example, and there are lots of others, but there's one called Huel H U E L. I think Huel  is a good idea because it's unflavored and for many people, the artificial flavoring of chocolate and strawberry and banana and that kind of thing is just too disgusting. But with unflavored Huel you can mix that up with oat milk or regular dairy milk if you are worried about losing a lot of weight so full fat milk, and then you can add spices to it that might make it more palatable for you. A lot of people, even people who have bad Parosmia, say that they enjoy cinnamon. So a couple of big spoonfuls of cinnamon in there to make sure that you experience something can be a good thing. So, you know, people should experiment with that, if that helps them. It's not inexpensive. Huel. But a big bag, I think supposed to last year month or something. So,

Jackie Baxter  20:15  
Right. Yeah, that's a great idea. And I can put a link to that in the show notes, if anybody is interested in looking into that. So yeah, I mean, this kind of brings me on to my next question, which you've sort of started answering already, which is great. Which was about supporting people who are living with this. Because again, I've not experienced it. And I don't think I realized quite how debilitating it could be to somebody. Yeah, what yeah, what sorts of difficulties and somebody looking at sort of day to day if, if they have experienced this loss? 

Chrissi Kelly  20:50  
I think that the the danger, especially for researchers, and doctors, and people who are looking at this from the outside, is that they think to themselves, yeah, okay, smell loss. So they're not going to be getting very much out of their food. And maybe, you know, this is making them feel unhappy. The reality of that is much, much different. I think that it is kind of existentially destabilizing to lose your sense of smell. Our sense of smell is completely bound up with our sense of self. And when you don't have a sense of smell, it's like you're looking in the mirror, and there's no reflection there. We're constantly feeding back to ourselves with our own smell, and I don't mean that in a bad way. I don't mean that in a kind of body odor way. But you are also a comforting presence to you. And there's been some really interesting research done on what they called Auto smelling. And that's like smelling yourself, smelling your laundry. Do you smell your children's laundry, do you know, things that are slightly embarrassing to admit, but things that we all do? So without that, it's very destabilizing. 

And I always think to myself that by the time, and of course, with long COVID, we're looking at a whole range of symptoms. And we only talk about the sort of Rhinology aspect of it. But I mean, let's just take that, let's just take the word Rhinology, right there, Rhiologists, who, people who have lost their sense of smell, think they want to see, they can look inside your nose. And when they do that, after it's been a couple of months, they'll say, looks fine to me, you know, go home, there's nothing I can do for you. And by the time the patient has made their way to that Rhinologists or ENT surgeon, the problems of smell loss have just drifted into all parts of their lives, oozed into all the other parts of their life. 

So that will mean that you know, with a disrupted eating problem, you are missing out on the social interaction of being with your family. And let's just think about it, just imagine getting dinner on the table. If you're the person in your family, who is responsible for the cooking, the shopping and all that kind of thing. You know, you've got everything from meal planning, going to the grocery store, preparing the food, putting it on the table, washing up, there's a whole trajectory of experiences that go along with that, that expose you to smell, except maybe with the menu planning part, which you might do in front of your laptop. But all those experiences then become very, very distressing. And so frequently, and we recommend this, if it's that bad for you, you need to remove yourself from that equation entirely and leave the cooking to someone else, because it's just too awful. I mean, there are when it's extreme, people vomit when they're exposed to certain foods. So that disruption in a family environment is very, very distressing. You know, people can't deal with their children, they can't feed babies, you know, they find that so disgusting. 

So there's that aspect of it, there's the fact that you put your arms around your partner and they smell disgusting to you. That is very, very disruptive. You lose access to all the - imagine all the things that you do to soothe yourself when something goes wrong. So it's a cup of tea or a bubble bath or a scented candle. Whatever it is, I can guarantee you that if you want to make yourself feel better, it will almost always involve some sort of olfactory experience and that too is gone. So you're feeling bereft, you're feeling stressed, you're feeling terribly, terribly anxious. I mean, that's what I see. I see an anxiety problem enveloping the whole thing, and then no way to help yourself. So recognizing that, we offer peer support, because people need to get that out and swap that story with other people who can agree with them and provide affirmation for what they're going through.

Jackie Baxter  25:18  
Yeah, for sure. I mean, I've noticed throughout this whole experience of long COVID, how important peer support is, you know, especially when you're not really getting a lot of help from specialists, maybe because they don't understand or maybe because they're, you know, there's been a lot of gaslighting going on for some people, and to not get that support from the place that you're supposed to get it from. That's where the peer support and all the support groups and, and things have really come into their own I think,

Chrissi Kelly  25:45  
yeah yeah. Certainly with COVID, over and over, we see people say, you know, I waited six months for this appointment to see an ENT, and he looked in my nose, and he said, there's nothing wrong and I should go home. Well, there is something wrong, but it can't be solved by an ENT. Rhinology is not where the short term help is going to come for these patients. Yes, of course, there's masses of research going on, there's all kinds of publications are coming out just by the day, more and more coming out. So we are grateful to those researchers and clinicians who are working on that side. For the ENT who's you know, is not keeping up with the latest in olfactory loss from COVID, the response will be, you know, there's really nothing we can do to help you and, and then so often, they'll say, if you haven't had any recovery in a year, you're going to have to live with it, you're just going to have to take up new hobbies, 

Jackie Baxter  26:46  
ouch. 

Chrissi Kelly  26:49  
And that's well meaning. But it's unfortunately shows lack of understanding for what's actually going on inside the mind of that person. So at AbScent, we talk about five pillars of support for people who've lost their sense of smell. So they include peer support, which we've just been talking about, and that's through forums, or sometimes in person gatherings. Clinical support, so that's support from your doctor or your ENT, which hopefully you can get but might not have been very helpful. Support with food - support with managing this new relationship with food, and this altered eating experience. Then we have practical advice, which is things like helping people understand more about smell training, and why it's good for them, and the many, many misconceptions that there are about smell training. And then finally, mental health support. 

And, of course, clinical support and mental health support. That's nothing to do with us that has to be had outside of AbScent, but we always talking about the importance of mental health support for people who really feel that they are struggling, and and there are many of them, who also tell themselves, you know, why am I so bothered about this? You know, it's just my sense of smell. But then equally, there are all kinds of people who will join in that conversation and say, no, no, it's normal to feel that way. And you should get support with mental health. I do hope that in time, mental health community will kind of take more of an interest in this. Because it's important.

Jackie Baxter  28:30  
Yeah, I think it is. I mean, you know, if you lost your eyesight, then you'd be straight off to the doctor, and they'd be doing all sorts of things to help wouldn't they, or to try and help. Whereas somehow, if you say, Oh, I can't smell it's somehow not seen as important. 

Chrissi Kelly  28:45  
Yeah. 

Jackie Baxter  28:45  
Which Yeah, I think is wrong. So you just mentioned your five pillars, and like, say that they're all incredibly important. Something that I find quite interesting is smell training, because I want to know a little bit more about what this is. 

Chrissi Kelly  29:00  
So smell training is - I always call it a supportive technique, because it's not a cure, it is something that will hasten recovery. Now, there have been a lot of studies on it, and these studies in all kinds of settings. So with young people, old people, people who have had different kinds of smell loss. And in these studies, the people who undergo smell training for a couple of months, when studies looked at longer term, like six months, or even nine months, those people perform better with their objective olfactory tests. So you can give a test, I can give you a test and and then I can say your sense of smell scores, this high out of 48. So they give these objective tests both before they begin the study and then at the end of the study, and then they compare the results of the people who smell trained against the people who have not smelled trained, because we do know that there is a natural recovery will happen to a greater or lesser extent. And that's measured by the people in the control group. But people who add smell training on to their natural recovery, they do perform better. And in some cases, you know, quite strikingly better. So that's the reason to smell train. 

I think that there are lots of ways that people misunderstand it. And every time I see misunderstanding of smell training, in a discussion, I think that that is a shame, because people who could benefit from it will be turned off from it. So someone might come into the group and say, it's been 18 months for me, and I'm going to leave the group now, because I'm better. And I just want you to know, I didn't do anything special. And I didn't do smell training, because that didn't work for me. But you know, in time, I was fine. And I think to myself, that's a bit of a shame, because now everyone will read that and think, Well, what's the point? But I do think there are so many benefits to smell training. And people misunderstand what it is, and therefore, they don't do it, or they don't do it as often as they should have. So compliance is the biggest problem, I think that there is, people might do it once or twice, and then they just give up. 

What you're trying to do with smell training, is to establish a habit of interrogating everything in your environment for smell. And for people who lose their sense of smell, they very quickly give up that impulse. And they just turn away from it. And what we want to do is keep that impulse going, so that you smell your coffee before you drink it or that you think about what it smells like when you go outside. And ambient smells, by the way, are something that comes back at the end, because they're quite dispersed, and they're not very strong. But it's always important to keep looking. And I think the important thing to remember is that smell training is not about an odor object in your nostril. That's not where the work is happening, the work is happening up here. When you think about the smell, look for the smell, try and recall any recollections that you might have that are related to the thing that you're trying to smell. And those activities can also send messages into the olfactory bulb from the top down. 

What we do know is that people who lose their sense of smell has show a reduction in olfactory bulb volume. And olfactory bulb volume is strongly correlated with depression. So once messages stop going into the olfactory bulb, and the olfactory bulb begins to lose its volume, very quickly depression sets in - doesn't sit in immediately, what sets in immediately is the anxiety. And then you get this gradual kind of dulling down, you know, the world seems more and more colorless. So that response, that brain response to a reduction in the signals that are sent to the olfactory bulb can be counteracted by thinking about smells. And I think a lot of people just have difficulty accepting that or making that seem real to themselves.

Jackie Baxter  33:28  
That's really, really interesting. And that is something that people can just do at home themselves, is it?

Chrissi Kelly  33:35  
Yeah, so we've got full instructions on our website, we've got a number of really good YouTube videos where I discuss smell training with some people who are leaders in the field. So you can find all of that on our YouTube channel. And then if you go into the YouTube channel, and then just look for smell training, you'll come up with a whole video list. 

Jackie Baxter  33:59  
Great, I'll drop a link to that in the show notes as well, because that sounds like something that a lot of people might find useful. So, and certainly what I wanted right at the start, was something that I could do that would help and I really struggled to find anything because I was a guinea pig. I was a first waver. But I think you know, what a lot of people want is something that they can do that's practical. So you know, the smell training is an obvious one, now you've talked about it. Is there anything else that people who are sort of struggling with the smell and taste can do practically day to day that might help, I guess either to regain it or to cope with the loss of it?

Chrissi Kelly  34:43  
So there are a couple of things that that can be done to encourage people to eat more. I mean, these recommendations are really more in the realm of food, but you know things like going for a good true taste balance when you prepare meals, so you might combine sweet and sour or sweet and salty, for instance. If you made a salad, you might add some nuts into it for like a difference in texture, or combined temperatures - something warm served with something cool. So those things are really important. 

The visual aspect of food is also really important. I think nothing is more dispiriting than white food on a white plate. So and a lot of people eat plain boiled rice or plain boiled pasta. With cheese, that seems to be a go to food for a lot of people with smell loss. But all of that on a white plate does look kind of unappetizing. So anything that you can do to make it look more attractive, is really important. So those are some things that I can think of. Adding trigeminal hints to the food. So chillies, for instance, ginger, mint, things like that. That can also add and those all those foods, as I mentioned at the beginning of the program, stimulate a third nerve called the trigeminal nerve. So that's just it adds an extra dimension to the food.

Jackie Baxter  36:15  
Cool, that's really, really helpful. Can this affect children as well? I mean, you know, a lot of the long COVID kind of dialogue is around adults, and children seem to get a bit forgotten, because, you know, the narrative was that they would be fine. And obviously, we know that they're not, but is this similar? Does that affect them too? 

Chrissi Kelly  36:33  
Yes, we've got a lot of children. AbScent also runs a Facebook group for COVID kids. And in our private network, we also have that as a topic that people can follow. What happens with children is that they don't necessarily report loss of smell, because they don't really, they can't articulate that. But what will happen is it they'll go off their food. And I think the thing that parents need to look out for is a child that refuses its favorite food. And when that happens, you know that there is a Parosmia problem. 

I don't think I've seen persistent smell loss in children beyond maybe six months, something like that. So that's good. And of course, that's logical because children have a great capacity to regenerate. And don't forget that the olfactory system is regenerative. It is unique in the body, and that it is constant. It's got stem cells in it. It's constantly producing new ones, it looks like COVID might be impeding the regeneration of new cells. But our sense of smell is designed that way. And so in young children, you might expect that it would definitely improve in time,

Jackie Baxter  37:58  
is that why like when you're a child, you might not like certain foods. And then as you grow up and become an adult, that you do start sort of eating things that you didn't as a child?

Chrissi Kelly  38:09  
Yeah, there are a lot of foods that you develop a taste for as an adult, you know, things like coffee or beer or you know, chili as examples, then there are other ones that are challenging textures like oysters or liver, you know, things like that. What we do know for sure, is that as we age, we develop a taste for more bitter foods, which is why orange marmalade is preferred by the older demographic, and young children are always like, Ugh, how can you eat that? So yeah, so I think that is something that has to do with aging, of the taste and smell system. 

And of course, with aging, bit like vision, you know, we're all losing our sense of smell with age. So your sense of smell will start to drop off when you need reading glasses. So that's something else to bear in mind. And going back to what we spoke about earlier. It looks like smell training might stabilize a sense of smell in an older person. 

Jackie Baxter  39:22  
Wow. 

Chrissi Kelly  39:23  
I think I'd like to end by giving a message of hope to anyone who's lost their sense of smell and has long COVID. So many doctors will say after one year, there's no hope. But we know that's not the case. We are still hearing about people who have started to experience recovery after two years and six months. So I think we should keep an open mind on that. It looks like the virus works in weird ways, as I just mentioned to impede the development, or the hatching if you like, of new neurons. So people should just stay calm and stay focused and continue smell training, and continue to go back into patient support groups, if that helps them. And I really think they probably do. So, you know, I want to wish everyone a good recovery and a speedy recovery. And until then, lots of help in support groups.

Jackie Baxter  40:23  
Yeah, thank you so much. And you've given loads and loads of really helpful tips today as well. So everything you've mentioned, I'll pop into the show notes. So if anyone's looking for any of those links you've mentioned. 

Well, thank you so much for joining me today. It's been an absolute pleasure chatting with you, and I've certainly learned a lot, so I hope that everybody listening will as well. So thank you so much.

Chrissi Kelly  40:46  
Thank you very much Jackie, and wishing everyone a speedy recovery.

Transcribed by https://otter.ai