Fifth Sense National Conference 2023 – a personal perspective by Mike Wash

There was an air of expectation that this conference was going to be significant in the journey towards moving from an invisible disability to one that is as commonplace as hearing and sight loss. It did not disappoint.

Duncan Boak, Fifth Sense founder and now Chief Executive, welcomed us to what was going to be an intriguing day.

First up was Debs Davies, a trustee and ambassador for the charity. Debs shared her personal story about living with congenital anosmia. From sharing her nail varnishing episodes on a crowded train, to having to change clothes before arriving at work due to the uncertainty of how others smelled her, to recognising that it is better to be open about this hidden special ability. This enables open dialogue with others, so they understand her experience and also inform her about what the experience of smell is like. It struck me that she could not grieve for something she never had.

Steven Munger, Director of the University of Florida Center for Smell and Tast and Fifth Sense advisory board member, then spoke very convincingly of the need for standardising testing and screening for smell and taste. Recognising that early detection can help in identifying possible diseases such as Parkinsons and Alzheimer’s but also offering early support interventions for those experiencing this disability. Insights to Chemosensory testing using a smell identification test, odour detection threshold and taste tests both paper and electronic highlighted the discrepancy between the availability of these lack of common practice in their use today. A quick vote to those who had seen a GP or specialist to get a diagnosis was taken.  Out of those, a clear majority indicated that they had not had a smell or taste test.

By now we were suitably warmed up for a general Q&A session and an opportunity to share any personal coping strategies for living with a smell or taste disorder. Professor Carl Philpott and Debs Davies joined Steven Munger as the panel to field the questions. Although we were aware that the panel couldn’t give individual medical advice, understandably, some of the questions related to asking for opinions about our own diagnoses. For example, I asked – after removal of my polyps my sense of taste and smell almost disappeared – whether damage of the receptor area happen as a result of surgery.  Of course, Professor Philpott’s answer was not definitive but he did confirm to me that, since this was 15yrs ago, a reappraisal of the situation would be well over due! Someone highlighted the restrictive aspect of  smell and taste disorders (SATD) when it comes to career choice especially for early onset or congenital anosmia – fire fighter, police, the services perhaps the caring professions may create barriers in fulfilling certain duties – whether these would discount successful application to these areas of work I would not know, but makes you think! One coping strategy someone highlighted was the importance of recording recipes when cooking with the aid of his wife as taster.

Sarah Pearce, Director of Services and Operations for Fifth Sense, then described the work the team are doing on the Smell Safety project funded by Cadent, the UK’s largest gas distribution network. Mags Robinson and Helen Rhodes joined her to talk about their Support and Information and Education and Engagement roles.  I didn’t realise you could get a natural gas detector and the importance of having a gas cut off option if your flame goes out. I certainly have sat, for I don’t know how long, with the gas hob left on with no flame only to be greeted by my wife on her return home to “can’t you smell that?”

Lunch was a very pleasant experience – the chef had created choices that were fun of colour, texture and bold tastes. I, for one, did taste the sweet chili dressing and the tartness in the raspberry sauce!

During the lunch break we also had a demonstration by Ceylan Besevli, of the Smell Care device showing how you can measure your own responses to smell exposure using a smart phone app and smell dispenser. This could prove a significant aid for smell training.

Dr Nicholas Rowan from John Hopkins University Sinus Centre Baltimore shared his research into sense of smell and ageing via a pre-recorded video.

Psychologist Rachel Herz,  also a Fifth Sense advisory board member, then appeared via zoom from Brown University, Rhode Island. She gave a fascinating insight into the links between smell and psychological wellbeing.

Prof Carl Philpott, Professor of Rhinology and Olfactology at the University of East Anglia (UEA) and Fifth Sense trustee and Director of Research and Medical Affairs, gave us an update on the Fifth Sense Research Hub. He was joined by researchers Tabitha James, Lorenzo Stafford, Robyn Iredale and Ceylan Besevli,  who gave us a fascinating insight into their research projects. Tabitha James from UEA spoke on the effect of smell Loss on declarative memory and the link between smell and memory. This raises the question: can olfactory memory training improve visual memory and can memory training improve olfactory processing? Lorenzo Stafford from the University of Portsmouth talked about his food taste multi-sensory study. I was interested in the link between sight and taste. How does texture enhance taste? How does the colour of plates effect the perception of flavour? Robyn Iredale spoke about the Parkinson’s Progression Markers Initiative (PPMI), a sub study part of the Michael J Fox foundation for Parkinson’s research. She explained the connection between brain health and smell loss. The researchers are trying to identify biomarkers and better understand the neuropathology of disease. I have signed up to volunteer in their research process. Ceylan Besevli spoke about the Smell Care digital smell training research project which investigating whether people will engage in daily digital smell training. The study is underway in London and the researchers are currently recruiting in Norwich.

Dr Graham Wynne co-founder and Chief Technology Officer of the pharmaceutical company Rhino Therapeutics, and a Fifth Sense advisory board member, then gave a very hopeful presentation concerning the research into the development of pharmaceutical solutions to the regeneration of olfactory capability. Although mainly linked to presbyosmia (old age onset anosmia) there are likely to be valued applications to other causes of anosmia, including post viral anosmia. I couldn’t believe that Rhino Therapeutics, via funding from the Curie.bio investment group, are the only players in this field. Covid has been a silver lining to highlight the seriousness of SATD and this development will make a significant splash causing waves that may result in competition from the big players – there is hope therefore in about 5 to 7 years that we will have regenerative drugs that improve our sense of smell.

After that it was back to Duncan Boak, who was joined by Robert Meadowcroft (Chair of Trustees) and Azim Karimjee (Treasurer) who gave us an update on the charity and future plans. A successful bid has resulted in a £457K grant over 3 years from Cadent, the gas distribution network, and, if they win the current application of over £200K then this will indeed be good news. For a national charity, Fifth Sense’s income is very small, so all donations and efforts at fund-raising are welcomed.

The conference ended with a celebration of Fifth Sense volunteers and fundraisers led by Sarah Pearce.  Fifth Sense volunteer Glynis Colesby spoke about her role, encouraging more of us to get involved to support the charity in any way we can.

My reflection:

All presentations throughout the day raised awareness and gave insights to our condition. For me, the following were key thoughts, themes and questions I went away with:

• The olfactory nerve is the only cranial nerve that is exposed to the outside world via the olfactory epithelium. The visual representation of the function of smell in diagrammatic form is a significant help to me – as I do believe in the power of self-healing. The more vividly I can picture the focal point of smell, the better I can focus in meditations. Also, to celebrate the regenerative nature of some of these cells particularly the horizontal basal cells!
• Smell is linked to lifespan! Research shows a significant link to frailty and reduced longevity.
• There are 40 billion odorants!
• The link between smell and memory is clear. Smell and memory are linked – physiologically connected to the hippocampus and amygdala.  Question – can your memory diminish because you can’t smell?
• Can we improve our sense of smell by taking Vit A and B Carotene?
• Smell loss can contribute to a reduction in sexual intimacy, social relationships, spatial ability (map reading), executive functioning – e.g. looking smart and planning. Significant link to depression and loss of nostalgic memory.
• Weight gain can be as a result in seeking out foods that have some oral sensation – salt, sweet, bitter spice – could be an unhealthy diet as with myself i.e. a dominance of salty snacks, ice cream, cheese, chocolate and curries!

Thank you to the whole Fifth Sense team and to the speakers for an inspiring day. I left the conference with the feeling that Fifth Sense will go from strength to strength. Increasingly it is being recognising as the national representation and voice for this form of disability. I, for one, am very grateful for the work that Fifth Sense is doing and, since attending the conference, have become a regular donor.

Mike Wash, Fifth Sense Member