We took part in the Farsley Festival in Leeds on Monday 26th May, and chose a prime location to talk about smell and taste to people – right next to the stall selling home-made pizza from the pizza oven in Farsley churchyard!

Perhaps unsurprisingly, what worked particularly well was the jelly bean taste test (getting people to eat a jelly bean whilst holding their nose – it has no flavour – and then letting go and the flavour suddenly rushes into the mouth).  We tried this with lots of people, many of whom thought it was amazing – so many people had no idea at all just how important the sense of smell is to flavour perception.

What was also noticeable, just as in previous public events we have done, was just how many people we talked to had a smell-related disorder.  In the first 30 minutes we spoke to four people with chronic sinus problems, two of whom had been given operations to remove nasal polyps in the past that had been completely ineffective.  We were able to pass details on of the clinicians with whom we are working which were gratefully received.

Another successful event, and as Fifth Sense continues to grow and develop then we’ll be looking to visit a town or city near you!

‘Does the smell of this make you think of a place, a person, a situation?’ The incredible power of the sense of smell in evoking memories

Fifth Sense participated in the 2014 British Rhinological Society (BRS) conference held on 16th May at the Assembly House, Norwich. The BRS is a sub-group of ENTUK, with membership consisting mainly of Consultants and Registrars who work in the field of rhinology – the nose and sinuses.

Our presence at the conference gave us an excellent opportunity to engage directly with the ENT profession and raise awareness of the impact of olfactory disorders, and the existence of Fifth Sense.

We felt that the conference was very successful from that perspective. There were a number of talks in the morning, one of which was from Tim Bradshaw. Tim has been working with Mr Carl Philpott on the Personal Accounts of Anosmia (PAAS) study, to which many Fifth Sense members have contributed their own accounts of the difficulties they face in living with the condition. Tim gave an excellent summary of the findings, along with anonymised quotes from the accounts.

This was backed up by an excellent talk from guest speaker Professor Thomas Hummell from the Smell and Taste Clinic at the University of Dresden. Prof Hummell’s talk covered causes, treatment, and the impact of olfactory disorders on patients, and was very well-received by delegates.

Following Prof Hummell’s talk, lunch was served, with guests being issued with a nose clip by Fifth Sense’s Duncan Boak. Dessert consisted of three different flavoured fruit mousses, labelled only with the letters A, B and C. Duncan introduced himself and Fifth Sense to the delegates, and explained how they were to try each mousse with the noseclip on, and guess the different flavours both with and without the nose clips. It was brilliant to see so many of the delegates really engaging with this, and gave Duncan the opportunity to go around, speak to individuals and tell them more about Fifth Sense and the negative experiences of so many of our members, both in terms of quality of life and also from unknowledgable and/or unsupportive doctors.

We also had the opportunity to catch up with nearly all of the Consultants we are working with who treat smell and taste disorders – Sean Carrie, Claire Hopkins, Lisha McClelland and Carl Philpott, who hosted the conference. We’d like to remind all our members of the smell and taste clinics page on our website – www.fifthsense.org.uk/clinics – if you’d like an appointment with any of the clinics featured on the site, then ask your GP for a referral. We also met Amin Javer, who runs a sinus clinic in Vancouver in Canada, with whom we are soon to start work with in providing support for Canadian smell and taste disorder sufferers.

All in all, an excellent day, with lots of new contacts made and plenty of awareness-raising done in a sector of the medical profession that is really important to Fifth Sense and smell and taste disorder sufferers. Hopefully we’ll be back next year!

Fifth Sense has a stand at the 2014 Farsley Festival in Leeds.  We’ll be demonstrating how we plan on delivering the UK’s first National Smell and Taste Survey by testing people’s sense of smell.  We’ll also be demonstrating the difference between taste and flavour, and getting people to connect smell and memory.

This year the Tour de France starts in Leeds, so we’ll also be passing on the important message to cyclists that they must wear their helmet, given that a major cause of olfactory loss is head injury, as many of our members will know.

The Farsley festival is becoming quite a major event – roads are closed for the day and there are lots of stands, a farmers market, and all kinds of activities going on.  In 2013 there were around 10,000 visitors – that’s a lot of smell testing for us to do!  If you’d like to come down and say hello and also visit the rest of the festival then visit www.farsleyfestival.co.uk for details, or find them on Facebook here or on twitter @FarsleyFestival.  We’ll look forward to seeing you there.

On 22nd April Fifth Sense visited the Wellcome Trust Sanger Institute to meet geneticist Dr Darren Logan and his colleague Gabi Gurria. Many of our followers will have heard of Darren as he spoke at the Fifth Sense Charity Launch in March. His and Gabi’s work at the Sanger Institute is focused on understanding the genetics of behaviour, and how the sense of smell influences behaviour.

Much of the work that Darren’s team do involves studying the behaviour of mice, and how they respond to olfactory stimuli. For example, one such experience involved placing a drop of male mouse urine at a particular point in a cage. A female mouse was then released in to the cage, and made its way to the part of the cage where the urine was, attracted by the smell of the male mouse. When the same mouse was then released in to a cage without any urine, multiple times, it made its way to exactly the same spot. Thus, both behaviour and memory was influenced by the sense of smell.

Darren and his team aren’t just interested in olfaction in mice, however; they are also interested in how research in this area can potentially benefit smell disorder sufferers in future. For example, by studying the genes turned on in the nose of post-viral anosmia (PVOL) sufferers and comparing to that of people with a functional sense of smell, can gene expression patterns be detected in patients with PVOL?   As Darren explained, though, seeing patterns is one thing, but understanding why and how these occur is another, given that we still at the very beginning of learning how our genes make us who we are.

‘You can think of a gene expression pattern like a barcode for a particular cell or tissue in a healthy state (where each of 37,000 genes is on or off). If the cell or tissue is infected or damaged, the pattern will change – as will the barcode. Thus we may be able to spot a barcode that is characteristic of PVOL. The next phase is to ask which genes are differently expressed between the healthy and damaged tissues – as this may provide clues into how and why it is damaged and how it might be treated.’

The second part of our visit involved a tour of the Sanger Institute, which included a visit to the labs where DNA is sequenced to create complete sequences, or genomes. These are then stored so they can be analysed by the researchers at the Institute whose work encompasses many aspects of biomedics.

For more information on Darren’s work, visit http://www.sanger.ac.uk/research/faculty/dlogan/

To read about the Human Genome Project, the first time that the human genome was sequenced in its entirety, visit http://www.sanger.ac.uk/about/history/hgp/

DNA being sequenced in the Sanger Institute’s labs

The launch of ENTUK’s Generate project provides UK-based smell and taste disorder sufferers with an excellent opportunity to help shape the future of research in the area of ENT (Ear, Nose and Throat) practice. ENTUK is the body that represents ENT medical practitioners in the UK – visit www.entuk.org for more information. The Generate programme is explained in more detail at https://entuk.org/ent_patients/generate

This is the first time that Fifth Sense members, the UK’s first body of people affected by smell and taste disorders, have had the opportunity to put their thoughts on research directly to the ENT profession. If you live in the UK and suffer from such a condition, then complete the survey by visiting the link below.

https://www.surveymonkey.com/s/ENTUK_GENERATE

Fifth Sense also has a stand at the British Rhinological Society annual conference on 16th May. Here we’ll be talking directly to the ENT clinicians in attendance about the issues faced by Fifth Sense members, using the results of our ongoing quality of life survey to demonstrate the impact that smell and taste disorders have on us all. Please support us in our efforts by participating in the Generate survey and make your voice heard.

Fifth Sense had the privilege of participating in the Imagining the Future of Medicine event, organised by Imperial College London in partnership with TEDMed on April 21st. We were able to speak to delegates who attended The Cell in the Sir Alexander Fleming building on the South Kensington campus, where innovators in health care were on hand to discuss their work and objectives. Fifth Sense Founder Duncan Boak, Mr Carl Philpott of the University of East Anglia and the JPUH Smell and Taste Clinic, Maggie Rosen and Chrissi Kelly were on hand to meet the public and ask “What does your sense of smell mean to you”?

As well as discussing taste and smell disorders with visitors to the stand, we were using an innovative device called the Scentee to test people’s sense of smell.  This involved them smelling different scents emitted by the device and then completing a short questionnaire.  This was our first trial run of the National Smell and Taste Survey that we are planning on running in 2015.  This was a huge success and we had a small crowd of visitors around our stand for the duration of the event.

Duncan also delivered a talk in the lecture theatre to around 150 visitors in which he talked about the importance of the sense of smell to our lives, drawing on first-hand accounts of Fifth Sense members from our ongoing quality of life survey to demonstrate the huge impact that smell and taste disorders can have upon people’s lives.

As always, it is of great interest to speak to the public and hear their stories first-hand. Perhaps the most striking feature of our time at Monday’s event was the number of people who came forward to say that they, or someone they knew, suffered from some form of olfactory disorder. This supports what we already know to be the case: whilst smell and taste disorders remain largely hidden, the effects of them have far-reaching consequences.

The later part of the afternoon was spent in the Royal Albert Hall, where Dara O’Brian hosted the Imagining the Future of Medicine lecture series – three sessions with four inspirational speakers in each – on innovation, creativity and expertise in healthcare. Fascinating insights and plenty to draw on for Fifth Sense. During the networking event before and during dinner, we were able to meet a number of the speakers, and again, we were told people’s personal stories of anosmia. The recurring themes of the day for Fifth Sense were that those who are unacquainted with anosmia are surprised to hear of the profound effects on sufferers, and for those who already knew of the condition first hand, they are bewildered and isolated–an indication of the timeliness of the Fifth Sense message.

What does your sense of smell mean to you? Duncan Boak delivers his talk in the lecture theatre at The Cell

Imagining the Future of Medicine in the Royal Albert Hall