Researchers at Oxford Brookes and Ulster University are running a research study investigating the reasons for any impact that taste and smell loss due to Covid-19 can have on our mental health and lifestyle. This work is building on an earlier research study that over 1,000 people took part in, including a lot of SmellTaste members. This earlier study investigated levels of depression and anxiety in people with changes to their taste and/or smell compared to those with fully functioning taste and/or smell, and will be published soon. What the researchers want to do now is find out exactly why these changes to taste and/or smell can impact mental health and lifestyle by hearing about the lived experiences from those of you who are living with this every day.
If you have experienced smell and/or taste impairment following Covid-19 and are interested in sharing your experiences in an online Zoom call lasting around 45 minutes then please contact Andy Mitchelmore, Senior Lecturer in Health and Exercise Physiology, at: amitchelmore@brookes.ac.uk
For World Smell and Taste Day 2022 I want to share a message on how important advocacy is at SmellTaste, and how actively involving and empowering the people we represent continues to be so vital to the work of our charity.
SmellTaste’s vision is to transform society’s understanding of the importance of smell and taste, and through doing so, transform the lives of those affected by smell and taste disorders. Our work over the years has demonstrated that if people have a better understanding if the ways in which smell and taste influence and impact our lives, then in turn they can better understand the impact that smell and taste impairment can have. This ‘transformation in understanding’ can be very powerful indeed when it is led by those of us with the lived experience of a smell or taste disorder.
It is vital for those of us with this lived experience to be able to speak up and advocate for ourselves, and in turn, educate others. We can all be advocates, but we often lack the confidence, knowledge and support to do so. This is one way in which SmellTaste plays an important role.
I know this from my own experience. For over six years after I lost my sense of smell I didn’t engage with it. This was due, in no small part, to being told by my doctor that little was known about smell loss and nothing could be done. I listened and I didn’t question this. My doctor knew more than I did, right?
It wasn’t until I read about someone else’s experience (Molly Birnbaum’s excellent book Season to Taste: How I lost my sense of smell and found my way) that I learned I wasn’t as completely alone, as I’d thought, and that there were doctors who knew about smell disorders. Reading Molly’s book prompted me to take action: I wrote to one of the experts I had read about, Prof Thomas Hummel. In turn, Thomas introduced me to Consultant ENT Surgeon Prof Carl Philpott, who had established the UK’s first NHS smell and taste clinic.
Through the conversations I subsequently had with Carl I learned that there were lots of other people who, like me, had been given no information or support, and there was nothing out there to help them. I decided to use my experience to positive effect and create the organisation that I wished in hindsight had been there to support me when I first lost my sense of smell. But more than that; I wanted to create an organisation that would give others the opportunity to use their experiences to help change the way smell and taste disorders are recognised, treated and researched. We launched SmellTaste in 2012.
Fifth Sense puts the people we represent at the heart of everything we do. This is one of the things I am most proud of about our charity: our focus on people, and how we support, encourage and empower those affected by smell and taste disorders to become champions of their own condition and play their part in our efforts to increase recognition, improve services and drive vital research.
And we involve everyone. The reason why we’re the charity for people affected by smell and taste disorders is because we seek to include and support those with the lived experience and also partners, parents, other family members, friends, as well as clinicians, researchers and others with a passion for smell and taste.
I’d like to take the opportunity to highlight just a few of the people who are actively involved in SmellTaste’s work.
There’s Chessie, who sought support from SmellTaste in 2017 just as she was beginning to come to terms with a diagnosis of congenital anosmia. Fast forward to 2022, and as a SmellTaste Ambassador Chessie has played a vital role in our Priority Setting Partnership and the Smell and Taste Disorders Symposium we held with the University of East Anglia, talking about the impact that congenital anosmia has on young people and their parents.
Tom lost his sense of smell after an unprovoked assault when he was 19 but it wasn’t until 2013 when he was able to share what this loss meant to him as a speaker at the very first SmellTaste conference. Since then Tom has become a passionate advocate for SmellTaste, now well-known within our community for leading our virtual #LetsTalkSmellAndTaste sessions.
Tracey has recently joined SmellTaste as a volunteer. Whilst she doesn’t have a problem with her sense of smell or taste, she is getting involved in support of a family member. Tracey wants to work with us to provide support to others and help increase recognition of the significant impact that smell and taste impairment can have on people.
Sadly I can’t include everyone’s stories here, but I would like to take the opportunity to say a huge thank you to all of our volunteers, ambassadors and champions for the important work that you do on behalf of SmellTaste and our cause. Head over to our website to find out more about our team.
This is how SmellTaste works. We actively involve the people we represent in our work and empower them to help us in our ongoing efforts to make these invisible disabilities visible.
And we need to, because there is still a huge lack of recognition and knowledge about smell and taste disorders across health and social care. Whilst the Covid-19 pandemic has highlighted smell and taste impairment like never before, it has also highlighted the lack of recognition and knowledge amongst healthcare professionals, lack of specialist services and lack of research into new treatments.
It’s through working together and enabling our voices to be heard that we can change things, and we’re continuing to grow and develop with the involvement of the people we represent. One of SmellTaste’s most important initiatives, our Smell and Taste Disorders Priority Setting Partnership, was led by a steering group made up of SmellTaste members and clinicians, and delivered a set of research priorities that are informing the direction of the SmellTaste Research Hub, launched in May this year.
There’s much more to do, and much more to come, and there are lots of ways that people can get involved in our work. Whether it’s providing support to others, raising awareness in your own community, or raising funds to support vital research, there are ways in which everyone can get involved. We’d love to hear from you. Please contact us as info@fifthsense.org.uk if you’d like to help, and if you’d like to make a donation to help fund our support services, educational work and research you can do so here.
Thanks to all of our volunteers, ambassadors and champions for everything you do.
Frauke, Dia, Katie, Sharika, Yazz, Alison, Charlie, Carl, Chessie, Aisha, Josie, Rebecca, Louise, Sarah, Debs, Tom, Ruth, Max, Julie, Joanne, Tracey, Trevor, Jan, Alison, Bayo, Lucy, Ed, Kathy, Elaine, Luke, Adam, Janet, Tracy
All the best,
Duncan
Chief Executive and founder
We are excited to announce a new collaboration between SmellTaste and technology company OWidgets. Working together to advance knowledge across our shared interests – research, education and the support of those with chemosensory disorders and innovation in digital smell technology – our collaboration will see us share our expertise and explore new projects together with the aim of improving the lives of people affected by smell disorders through the development of digital applications and devices.
OWidgets is a company established to both harness the use of the sense of smell and its power and aid people with smell disorders through scientific and technological advances. Established as a University spin-out in 2019, OWidgets (OW) was founded by two leading scientists – Emanuela Maggioni and Marianna Obrist. Emanuela received a PhD in Social, Cognitive, and Clinical Psychology in 2015 at the University of Milano-Bicocca, was visiting researcher at the University of Oxford and UCL, and is now an Honorary Research Fellow at UCL, Department of Computer Science, where Marianna is Professor of Multisensory Interfaces, leading an interdisciplinary team studying next to smell, also taste and touch experiences. OW creates digital smell technology that aims to transform an ecosystem dominated by sound and vision, giving the sense of smell the attention it deserves.
‘I’m very excited about the potential offered by our collaboration with OWidgets’ said SmellTaste Chief Executive and founder Duncan Boak. ‘Our Smell and Taste Disorders Priority Setting Partnership highlighted that SmellTaste members want to see technology being used to rehabilitate smell and taste, and there are other applications too, for example around safety in the home. The OWidgets team are passionate about making a difference to people with smell and taste disorders and I am looking forward to working together.’
Prof Marianna Obrist, OWidgets Chief Scientific Officer & Co-Founder, talked about some of the company’s work and plans in the presentation she gave at the 2021 SmellTaste National Conference. You can watch this on the SmellTaste YouTube channel here. To learn more about OWidgets visit www.ow-smelldigital.com
We’re delighted to announce that the British Society of Perfumers has made SmellTaste their 2022 Charity of the Year.
The Society and SmellTaste are looking forward to working together and engaging BSP members in the important work the charity is doing to drive forward vital support, education and research for people affected by smell and taste disorders, and highlight the essential role that these senses play in our lives.
“I’m very proud that the British Society of Perfumers has chosen SmellTaste as their charity of the year” said SmellTaste’s CEO and founder Duncan Boak. “The BSP and their members are as passionate about the importance of the senses of smell and taste as we are, and together we have a great opportunity to benefit the people that SmellTaste represents and increase people’s understanding of the impact that and smell and taste impairment can have on the health and wellbeing of those affected.”
Duncan gave the keynote speech at the BSP’s May 2022 symposium. He was very pleased to see the level of support for SmellTaste and our cause amongst BSP members. “Until I established SmellTaste in 2012 there was no organisation acting on behalf of the significant numbers of people experiencing problems with smell and taste, and we’ve been working hard since then to enable to get their voices heard. There is a greater awareness of smell and taste disorders than ever before because of the Covid-19 pandemic, and I spoke to many BSP members at the symposium who had experienced temporary smell impairment, or know someone who is struggling. Together we can push for greater recognition, understanding and improved services for the people SmellTaste represents.”
I am delighted I am that SmellTaste is our chosen charity this year and that they were part of our first one day symposium since the pandemic” said new BSP President Marianne Martin. “We were honoured to have Duncan our key note speaker. We are looking forward to further collaboration throughout the year and hope that the connections between the two organisations will continue beyond the year.”
We would like to say a huge thanks to the BSP for their support of SmellTaste and our cause. We are looking forward to working together over the next year and beyond.
Many years ago I travelled to a country where oranges were grown. I arrived just as the oranges were ripening on the trees and would soon be ready to harvest. The plane arrived in the early evening and I have never forgotten experiencing the smell of the ripening oranges and the warmth of the sun as I got off the plane. I had to ask what the smell was as it was a completely new fragrance to me.
Now when I go on holiday, being anosmic, I can’t appreciate what the new destinations unique smell might be. Before Covid I enjoyed travelling not only in the Summer months, but in the Winter months too. I remember travelling to Budapest in early December and experiencing that rush of very cold air as we got off the plane. I also remember how pleased I was that I had packed a very warm coat plus a hat, scarf and gloves! It so much colder and took your breath away.
We were there to visit their Christmas Markets as well as all the usual tourist attractions. I might struggle to smell the mulled wine on offer but the warmth and spices added made it very enjoyable. I had more than one glass whilst touring the various markets.
We always ask for recommendations for local restaurants. My senses of taste, smell and flavour maybe compromised, but the whole experience of visiting and eating in a local restaurant still make it special. When visiting Poland our Hotel suddenly had doughnuts everywhere. Tiny ones, huge ones and even a tray of them to help yourself when you were checking out. We found out it was a tradition held just before Lent. Who isn’t going to enjoy a massive warm, soft, sugary doughnut!
One year we travelled to Iceland in January. New lunch choice for me cinnamon scones, mmm. The most amazing memory is seeing a man with his ungloved hands hugging a very tall pole in a square which was completely clear of snow, (this was in January). He explained that the thermal springs kept the square clear of snow and that because of them the pole was warm too. He said ‘listen’. As the steam reached the top it turned back to ice and you could hear it as the ice particles fell back down inside the pole. I didn’t need a sense of smell to enjoy the Northern Lights, the thermal pools and the very friendly people. BUT, I wasn’t brave enough to try a local delicacy, rotted fish. Apparently once the jar is opened you must not breathe until you have swallowed the piece of fish. Even I can imagine the smell. One local practice didn’t surprise me but did other visitors. I used to live in the Scottish Highlands and after heavy snow it would be collected and then dumped in the river. In Iceland they dump their excess snow in the sea and we had to explain why they were collecting mounds of snow in a carpark at the docks to another visiting couple.
What I am trying to emphasise is that we can focus on our other senses to get the most from life. I’ve just been on my first holiday since the pandemic. I saw an amazing flower festival, ok no scents but amazing colours and varieties of plants. I was lucky to see to massive firework displays late evenings over the harbour and the most unique, a cherry festival! Ice cold vanilla ice cream topped with real fresh cherries and what I’m sure was a slightly alcoholic cherry sauce. Torture from the ice cold ice cream, sort of taste/texture from the fresh cherries and then warmth from the sauce, delicious, all whilst listening to local bands and watching a parade through the village.
When we travel on holiday as anosmics we may miss out on the destinations unique smells but there is so much more to enjoy. My next trip is waiting, I’ve no idea when or where but I know it will be special.
SmellTaste recently partnered with the University of East Anglia (UEA) to host a Smell and Taste Disorders Symposium to highlight the challenges faced by patients, the clinical management of smell and taste disorders and latest advances in research. We launched the SmellTaste Research Hub in tandem with the event. The symposium, aimed at healthcare professionals and researchers, was held both in-person at the University and virtually. It was chaired by Professor Carl Philpott, SmellTaste trustee and Director of UK’s first NHS smell and taste clinic and our CEO and founder Duncan Boak.
In the wake of the COVID-19 pandemic, smell and taste disorders have come to the forefront. However, despite the growing prevalence, patients can often feel the impact of their condition is not recognised, and there is a need for improved education and training of clinicians. The event included perspectives from patients living with different types of smell and taste disorders alongside approaches taken by clinicians in managing these conditions. Latest advances in the field of smell and taste research include the launch of our top ten research priorities gathered through our Smell and Taste Disorders Priority Setting Partnership with the James Lind Alliance. The event was attended by an international body of patients, clinicians, journalists and research personnel.
Mr Simon Gane, Consultant ENT Surgeon UCL, gave a talk on the olfactory function in health and disease. Miss Lisha McClelland Consultant ENT surgeon University of Birmingham and Miss Katie Whitcroft, senior ENT registrar from Yorkshire gave talks on history taking/olfactory disorder questionnaires and psychophysical smell testing respectively. The event also included a talk from Professor Claire Hopkins, Professor of Rhinology, King’s College London, on COVID 19 related olfactory dysfunction.
Professor Philpott led a panel discussion entitled ‘Managing olfactory disorders’, with all guest speakers including Dr. Sami, Associate Professor in dementia research, Norwich Medical School, Dr. Sara Bengtsson, Associate Professor in psychology, Developmental Sciences, University of East Anglia who also gave talks on the role of functional MR imaging and Olfactory Event Related Potentials in smell and taste research along with Dr. Caroline Huart, ENT Surgeon, Brussels and research clinician in Olfactology.
The other sessions highlighted recent advances in smell and taste research and included our plans for the new SmellTaste Research Hub, which has been established to take forward the research priorities resulting from the Priority Setting Partnership. These have been split into six core themes and have been assigned experts in the area. These include:
“This event was about a partnership with patients through SmellTaste, to make their voices heard and to set the scene for empathic management of smell and taste disorders. It also provided a platform to launch the outcomes of the James Lind Alliance Priority Setting partnership” Prof Carl Philpott.
On the back of the success of this year’s symposium, it is hoped that in May 2023, a 2 day symposium will be hosted at UEA to allow a greater breadth of topics to be covered: UK National Smell Symposium | ENT & Audiology News (entandaudiologynews.com)
Please contact K.Tate@uea.ac.uk for further details.
We would like to say a huge thank you to our volunteers Carl, Chessie, June, Lucy and Ruth for participating in the event and sharing their personal stories.
Report by Kala Kumaresan, Clinical Research Fellow, James Paget University Hospital, Gorleston-on-Sea, Norfolk UK.
One thing I have learnt over the past 10 years after becoming anosmic is to find ways to keep being positive about what I can still enjoy. At the moment it is the spring sunshine and the vast array of flowers starting to bloom everywhere. The cherry blossom on trees. From a dull winter landscape to splashes of colour all around. This helps to remind me that I can be positive and enjoy the world around me even without my sense of smell.
This sounds like I hibernate and just exist through the winter months, not true. Every season can be enjoyed in a positive way. I agree it’s tough to find much to feel positive about walking through a torrential rain storm whilst trying to keep your hood or umbrella up in a howling gale! We have been lucky recently as we have had a lot of rainbows after short heavy downpours as the seasons move from winter to spring. Travelling at speed on the Motorway and seeing the arc and colours of the rainbow, fantastic. Even more so when you look behind you and realise it is following you! (I’d better add that I was not driving).
We had snow this year too. I love walking through fresh snow and looking back at my own footsteps. Frost covering our lawn and the roofs of the houses opposite. Finding the tiniest snowman when on a walk, tiny because that was all the snow they had to make it. These are all winter experiences that I don’t need a sense of smell to enjoy.
When spring arrives and I walk out into our local countryside I love looking out for the new lambs and calves in the fields. Isn’t it amazing how quickly the lambs team up and have little playgroups, bouncing around together as their confidence grows.
In summer it’s enjoying seeing even more flowers coming into bloom. Waiting to see if I’ve managed to not kill off the tomato plants a friend has given me, will I have fresh tomatoes to use? It’s the warmth of the sun on my back, perhaps thinking about being brave and trying wild water swimming. (I haven’t been brave enough so far, but I could possibly be tempted when I walk down the side of my local lake.)
As autumn arrives it’s the colours of the leaves on the trees as they turn and get ready to fall. Autumn has always been my favourite season. There is one smell I do still miss, Petrichor. It is the smell released as rain falls on the dry earth after a long dry spell. I particularly like to remember the smell as a ‘memory’ smell if we have had a long dry summer. I also enjoy the crunch you get when walking through the fallen leaves just as much now as I enjoyed it when I was a child. So many reasons to still be positive as the seasons change.
When you lose your sense of smell it can be so overwhelming that it is very difficult to feel positive about anything. I remember just how that felt. I still wanted to experience life with all my senses as so much seemed to hinge on that, but I have learnt to enjoy my life minus the one sense, smell. I’m
not saying it wouldn’t be amazing to regain the missing sense but I have adapted and can enjoy my life without it.
Anosmia has taught me to value my other senses more. I have learnt to cook with more colour, texture and spice. The positive pleasure I get from stroking my friends dog, seeing the lovely colours that make up her coat, feeling the softness of her fur, and best of all the weight of her when she leans on me because she trusts me, magic.
I know if you are newly anosmic, perhaps due to Covid, learning to adapt and remain positive may seem impossible, but like me, you can reach that point where you begin to appreciate what you learn from all your other senses even if it means you are living a slightly different kind of life.
Today marks a milestone for SmellTaste, with the launch of our new Research Hub along with the publication of our Top 10 Research Priorities for smell and taste disorders.
The SmellTaste Research Hub brings together our research community under one umbrella for the first time, to improve collaboration and advance research. Our Top 10 Research Priorities were developed through a Priority Setting Partnership with the James Lind Alliance and the University of East Anglia.
Both are important steps forwards for SmellTaste, our cause and the people we represent, as we drive forward research to improve the health, quality of life and wellbeing of people affected by smell and taste disorders.
It has been an exciting journey. In 2020, as the Covid-19 pandemic was at its height and interest in smell and taste research had grown significantly, SmellTaste successfully applied to the James Lind Alliance to undertake the priority setting partnership, supported by our grant from the National Lottery Community Fund.
The story started much earlier. Delivering a priority setting partnership to establish research priorities has been a key goal since our inception in 2012,when Duncan Boak and Prof Carl Philpott established SmellTaste together. Since then we have worked to engage and involve the people we represent in research, and have continued to build relationships with leading clinicians and scientists in the field. Setting research priorities was an important next phase, giving people affected by smell and taste disorders, their families and clinicians the opportunity to put forward their priorities for future research.
Along with the publication of our Top 10 Research Priorities, we are delighted to announce the launch of the SmellTaste Research Hub. We look forward to working with our growing team of leading clinicians, researchers, commercial organisations and SmellTaste members to propel research that will transform the lives of people affected by smell and taste disorders. This is the beginning of an exciting new chapter for us all.
Visit www.fifthsense.org.uk/research to find out more and download our Top 10 Research Priorities and Research Strategy here
If you would like to make a donation to support our work then please do so here.
A huge thanks to our steering group members, data analysts, everyone who participated in the PSP surveys and final workshop and to everyone who has supported SmellTaste over the last 10 years. Here’s to an exciting decade ahead!
