At around 7am this morning SmellTaste trustee Carl Philpott started the first leg of the Deloitte Ride Across Britain, a 970 mile cycling challenge starting at Lands End and finishing at John o’Groats in nine days time.

Carl, a Consultant ENT Surgeon and Director of the UK’s first NHS clinic to specialise in smell and taste disorders, has played a huge role in SmellTaste since our inception.  He decided to undertake the 2017 Ride Across Britain in support of our charity and take a fairly recent passion for cycling up a level, aiming to raise £10,000 in the process.

As you can see from the route map to the left, this is no small undertaking, and we’re incredibly proud of Carl for taking up this challenge – as well as for the fantastic work he continues to do to help people affected by smell and taste disorders.

We’re going to be sharing news of Carl’s progress via our Facebook page and Twitter, so look out for updates!  If you’d like to sponsor Carl and support SmellTaste then you can do so safely and securely via his BTMyDonate Page at https://mydonate.bt.com/fundraisers/carlphilpott1

We’re sure you’ll join us in wishing Carl all the very best of luck!

 

 

Following the successful patient information day we ran last year in partnership with Ninewells Hospital in Dundee, we’re delighted to announce a similar event in conjunction with Consultant ENT Surgeon Mr Sean Carrie and colleagues from Newcastle Freeman Hospital and Newcastle University.

The information day will a great opportunity for anyone affected by a smell/taste-related disorder to come together with clinicians from the ENT Department at Freeman Hospital to meet others with the same condition and learn, share experiences, and ask questions.

It will feature a talk on eating and drinking with impaired smell and taste with contributions from Val Bryant, Duika Burges Watson and SmellTaste founder Duncan Boak.  Val and Duika will introduce, through film and discussion, findings from a National Institute of Health Research funded project on living with altered eating difficulties for survivors of head and neck cancer – Resources for Living.  Val led the patient input to the project, whilst Duika is the research lead. They’ll be joined by chef Sam Storey, who is working with Newcastle University’s catering team to provide lunch at the event.

The event is taking place on Saturday 30th September.  It is free to attend and limited to 25 places and lunch will be provided.  If you’re interested in attending then contact SmellTaste volunteer member Joanne Dixon at Newcastle@fifthsense.org.uk

We’re very pleased to announce that SmellTaste has recently welcomed a new trustee to the board. We sat down with Matt Jones to find out a little more about his background, what he’ll be bringing to the role and what he’s looking forward to in his first year with our organisation.

1. What attracted you to SmellTaste?
I met founder Duncan Boak and volunteer Tom Laughton at the Festival of the Senses which took place at Anglia Ruskin University in autumn 2016. My children thought the stall looked interesting and while they were busy trying out different smells from the smell kit, Duncan and I had a conversation that I found fascinating.

His passion for the charity really stood out as well as the value that SmellTaste brings to its members and to society – I was astonished to learn there was no charity for smell and taste disorders before SmellTaste was created.

2. Do you support any other charities?
I like to support friends and family who are doing something to collect sponsorship money – it’s a great way to help good causes and often motivates people to get active or try something new. My wife and I once did a walking marathon around London which started at midnight – it was a great achievement for us both but it’s not something we would do again in a hurry! I wish fellow trustee Carl Philpott all the best for his upcoming Land’s End to John O’Groats cycle ride which he is doing in September to raise money for SmellTaste.

Aside from donations I like to donate consultancy time and skills to charities, and have previously helped the housing and homeless charity Shelter with a project they were doing.

3. How will your background help you as a trustee?

My background as an accountant and Finance Director means I can bring business and finance skills to charities to help them create sustainable organisations – all charities face funding challenges and there are always difficult choices to be made on how best to use funds to deliver the mission of the charity. I hope to bring these skills to SmellTaste and help support its success.

4. What are you looking forward to for your first 12 months with SmellTaste?

During the first 12 month as Trustee I look forward to meeting members who have benefited from SmellTaste, learning more about smell and taste disorders, and learning how we can best support people affected.

5. What do you enjoy doing outside of work?

I vaguely remember having some hobbies in the past but most of my time these days is taken up with by young children who are three and five years old! Weekends are usually spent going to a zoo or feeding the ducks at a park, followed by ice cream – the kids seem to enjoy this too….

6. Can you tell us a fun fact about yourself?

I love crazy golf but I hate real golf. The more dinosaurs or pirate-related obstacles the better.

We’re delighted to announce that we are holding a SmellTaste Members Conference in Leeds, West Yorkshire on 4^th November 2017. We are are in the process of finalising the programme but we can confirm some of the exciting details already.

BBC R4 presenter Kathy Clugston, who has congenital anosmia, will be opening the conference with a talk about her life without smell and her experience at the Royal Society Medicine event and hearing other people’s stories earlier this year.

Our partners FlavorActiV will be presenting the Taste, Train, Enjoy pilot project that aims to help people with olfactory loss better understand and utilise any remaining sense of taste. The early results have been fascinating and very positive.

Mr Carl Philpott, Director of the Smell and Taste Clinic at James Paget Hospital and SmellTaste trustee, will be talking about causes of smell and taste disorders, treatments and the latest research, which we know will be of interest to many of our members.

Tickets will be on sale soon, please look out for further details on our website!

Click here to visit our YouTube channel and watch a video made at our successful 2014 Members Conference.

A number of recent press articles have reported on the publication of a research paper which suggests that mice with hyposmia (a reduced sense of smell) are resistant to diet-induced obesity.  But is this fact, fiction, or somewhere in between?  We wanted to get an expert’s perspective, so we spoke to Dr Steven Munger, Director of the University of Florida Center for Smell and Taste, who kindly penned the following article.

Does smell loss protect against obesity?

A central role for the senses of smell and taste is to help us make decisions about food. Should we eat it or throw it away? Do we like it, or find it disgusting? People with smell or taste impairments miss out on some (or all) of the information that odors and tastes convey about food and drink.

But a recent scientific study has prompted the question: do chemosensory disorders have any positive health impact? A new study published in the journal Cell Metabolism reports that mice with hyposmia (reduced smell) are resistant to diet-induced obesity. Perhaps unsurprisingly, many websites and media reports have chosen more provocative headlines suggesting that the sense of smell makes you fat, or that inhibiting your sense of smell could help you stay thin. But this is a dangerous leap.

The scientists who performed this study set out to understand the relationship between olfaction and metabolism. Given the relevance of smell to food choice and assessment, this was a great issue to investigate.

To test the impact of reduced smell on metabolism and weight gain, the researchers used a number of techniques to destroy many (but not all) of the mice’s olfactory sensory neurons (or “OSNs”)* within the olfactory epithelium – a layer of tissue at the top of the nasal cavity that is specialized for detecting odors. They found that when fed a high fat diet, mice in which the OSNs had been selectively destroyed gained less weight and burned more energy than did mice with an undamaged olfactory epithelium (there was no difference between the two groups maintained on a normal diet). This was the case even though the mice with fewer OSNs ate the same amount of food as the “normal” mice.

But are these changes in weight and metabolism a result of a reduced ability to smell? And if so, what is the relevance for humans? Some key questions, and cautions, remain. These include:

 

• Were the changes due to smell loss, or to some other damage that accompanied the OSN destruction? Perhaps the most significant question is whether the effects on metabolism and weight gain are actually due to a decreased ability to smell. The researchers chose to impair the mice’s sense of smell by destroying some of the OSNs in the olfactory epithelium. It’s possible that the epithelium normally produces a hormonal or neural signal that impacts metabolism. Indeed, many organs in our bodies serve multiple functions that are loosely related but separate. Therefore, the metabolic changes seen in these mice may not be due to the loss of smell, but to the removal of some other olfactory epithelium function. Future studies could clarify this possibility by examining if the same metabolic changes are seen in animals with reduced or absent sense of smell but with an otherwise intact olfactory epithelium. Several types of genetically-engineered mice exist that could be used in such experiments.

 

• Are these mice hyposmic? Disappointingly, only very rudimentary olfactory testing was used in a study focused on the impact of smell. The “buried food test”, which measures the time it takes for a mouse to find a buried food pellet, was the principal test employed to assess olfactory ability in these mice. While this assay may be a useful first test of olfaction, it does a poor job of measuring the severity of the deficit. Other factors can affect the results of this test, as well: the mouse may be less motivated, or less active. Much more specific behavioural and physiological tests can be used to confirm and quantify any loss of smell.

 

• Does age or experience play a role? In this study, OSNs were destroyed in adult mice that had been born with a normal olfactory system. So, this was a model of “acquired hyposmia.” Did the animals’ previous experience with odors impact the results? Would body weight and metabolic parameters return to “normal” if the animals were tested many months after the olfactory damage first occurred? What was the impact of the relatively limited odor environment and single food choice for these laboratory mice? These are just some of the questions that will need to be addressed in future studies.

 

• Mice are not humans. Mice have been, and continue to be, invaluable research models for understanding human physiology and disease. This is certainly true in the study of olfaction, and even of smell disorders. However, there are significant differences between mouse and man, from our genes and proteins to our social environment and cognitive abilities. Research investigating the impact of smell impairment on eating, obesity and/or metabolism in humans is remarkably rare. This study serves to highlight the need for more studies of the effects of smell impairment in humans in addition to the ongoing research in mice and other model systems.

 

The key message here is that we are a long way from linking anosmia or hyposmia to protection from either obesity or metabolic change. One hopes that no one would try to purposefully damage their olfactory system in pursuit of weight loss. As many people affected by olfactory disorders know only too well, the wide-ranging consequences of smell loss are not to be taken lightly.

* The OSNs are specialized cells that receive odor signals and transmit this information to the brain. OSNs are found in a tissue at the top of nasal cavity called the olfactory epithelium. In many cases of anosmia or hyposmia, it is the OSNs that are damaged or missing (though other causes include damage to olfactory brain areas and blockage of nasal passages).

 

 

For more information on the University of Florida Center for Smell and Taste visit http://cst.ufl.edu

SmellTaste are pleased to be part of the 27th symposium taking place in Cambridge in September, which is hosted by ECRO (European Chemoreception Research Organisation). ECRO supports young scientists to secure grants to help them at the start of their career, and provides all scientists with a forum and collaboration opportunities through the annual congress.

ECRO explain that: “Chemosensory disorders affect millions of people, negatively impacting their health, their social interactions and their overall quality of life.” In the past, patients and patient groups have not been able to engage with researchers and clinicians in the field, despite several decades of studies into the causes and potential treatments for smell and taste impairments.

At SmellTaste, we see the 2017 symposium as a great opportunity to demonstrate the importance of patient engagement to leading European chemosensory scientists.  Duncan Boak will introduce the symposium by highlighting some of the work that SmellTaste is doing to bring patients, clinicians and researchers together. Volunteer SmellTaste member Tom Laughton will then present his perspective on how interactions between these different groups are important to patients, based on his participation in SmellTaste events such as our Members Conferences.

Mr Carl Philpott, Consultant ENT Surgeon from the Smell and Taste Clinic at James Paget Hospital, will discuss diagnosing and treating patients at and his experience of leading clinical research into potential treatments.

From further afield, Director of the University of Florida Center for Smell and Taste (UFCST), Dr Steven Munger, will address the audience to look at the importance of outreach and education from the perspective of an academic organisation, based in part on his experience of delivering SmellTaste2017 alongside SmellTaste.

The event will close with a talk from Cedric Uytingco, a researcher UFCST, which will examine the advantages of using patient data to guide preclinical research aimed at developing treatments for chemosensory disorders.

ECRO hopes that the symposium “will provide unique insights into chemosensory disorders and suggest a way forward for a more effective search for therapies”. You can find out more here.

 

 

 

Videos of the different speakers at the recent ‘Medicine and Me: Living Without Smell and Taste‘ event organised by the Royal Society of Medicine are now available to view on the RSM’s website.  Links to all of them are below.

 

 

 

 

 

 

 

Smell and taste disorders: Latest research and treatment – Mr Carl Philpott, Consultant ENT Surgeon

 

 

 

 

 

 

Post-viral olfactory loss – Miss Lisha McClelland, Consultant ENT Surgeon

 

 

 

 

 

 

 

Post-viral olfactory loss: Patient perspective – Louise Woollam

 

 

 

 

 

 

Chronic rhinosinusitis: Patient perspective – Alahree McDonell

 

 

 

 

 

 

Post-traumatic olfactory loss: Patient perspective – Ian Rickson

 

 

 

 

 

 

Congenital anosmia: Patient perspective – Kathy Clugston

 

 

Our members will know that Mr. Philpott is going to be cycling from Land’s End to John O’Groats in September to raise money for SmellTaste. He provided us with an update on his training and progress, which you can read below: 

Firstly, I would like to thank all those who made donations thus far – we have raised £2,400 to date. Please do pass on the link to your friends and families and encourage them to do the same.

So, I’ve been trying to keep a steady training schedule in the run up to the big event, and a typical week involves 2 sessions on the turbo trainer – about 15-20 miles. I use an iPhone app to help me pretend I am cycling the actual route from Land’s End to John O’Groats – so far I have made it to Preston!

The turbo trainer had greater appeal when the nights were shorter and the weather colder but static cycling gets very hot, especially in this blazing June.

Friday is a cycle to my office at the medical school –  a 13-mile round trip, perhaps longer with a detour on the way home! The weekends are then the time to cycle for longer – typical runs are 25-40 miles in the Norfolk countryside.

Once or twice a month I will enter a sportive – last one was Norwich 100 (I actually did 113 for good measure!). The one before was the Brewin Dolphin Peak District event – this ended in “disaster” as my rear derailleur hanger snapped on the steepest hill only 20 miles into the ride! Forthcoming events include some more East Anglian events and a trip to the Malverns and Cheddar Gorge. And I recently upgraded my wheels to a Felt VR2 bike but haven’t found any upgrades for my East Anglian non-hill acclimatised legs!

Again, thank you for all the support thus far. If you want to see more about the ride please go to: http://www.rideacrossbritain.com – I’m doing the 9 day version (not the 5 day one for superhuman people!)

SmellTaste Members may be aware of a recent article in the Daily Mail highlighting a possible new treatment for loss of the sense of smell, involving an injection of blood up the nose. 

Upon review of the article and the study it cites, SmellTaste trustee Mr Carl Philpott (Consultant ENT Surgeon and Director of the Smell and Taste Clinic at James Paget Hospital) urges members to exercise strong scepticism when interpreting the article.

Mr Philpott points out that the study: “Looked at only five patients and did not use robust scientific methods to demonstrate the validity of any effect. Additional work, including a much more rigorous study, is needed to claim any potentially positive outcome.”

We fully understand that this might be disappointing news for people who saw the original article, which was part of a round-up of several research papers in a non-specialist publication, but hope that our statement provides some clarity on the matter.

You can read the research paper, which outlines the study findings, here.  

On Friday 26th May over 120 SmellTaste members, their partners and family members came together with medical professionals at an event at the Royal Society of Medicine (RSM)  in London.  Living Without Smell and Taste was part of the RSM’s Medicine and Me series, which provides patients and their families with an opportunity to gain insight from the medical profession and relevant patient bodies around a medical condition which affects them.

The event was proposed by RSM Dean Emeritus John Scadding after  Consultant ENT Surgeon and SmellTaste trustee Mr Carl Philpott deliver a lecture at the RSM in November 2016.  Mr Philpott and fellow trustee Duncan Boak met with John and RSM colleagues and co-designed a programme that incorporated SmellTaste members talking about their experiences of living with a smell/taste disorder alongside a number of ENT Consultants who explained what is known about these conditions and challenges involved in treating them.

Fragrance writer Louise Woollam opened proceedings by talking movingly about her experience of losing her sense of smell as the result of a virus, a situation that became much worse after she then began to experience severe parosmia.  ENT Consultant Miss Lisha McClelland of the smell and taste clinic at Birmingham’s Queen Elizabeth Hospital then spoke about post-viral olfactory loss, phantosmia and parosmia.

Alahree McDonell then spoke about how she has been affected by Chronic Rhinosinusitis for many years, and the various dietary changes she has made as part of efforts to self-manage her condition, which was improved by a visit to the rhinology clinic at Guy’s Hospital in London, run by Miss Claire Hopkins.  Claire herself followed Alahree and spoke about various ways in which CRS can be treated and managed, as well as the MACRO project that aims to improve the way this condition is managed across the NHS.

After a break, Ian Rickson spoke about losing his sense of smell following a head injury, and how this experience has affected his life in different ways.  Iordanis Konstantinidis, an ENT Surgeon who runs a smell and taste clinic in Greece, followed Ian by explaining how olfactory loss can be caused by head trauma.  Iordanis also spoke about the work he is doing to try to encourage early referrals from A&E to his clinic so patients can be investigated sooner for olfactory impairment.

BBC R4 presenter Kathy Clugston then gave a very engaging talk about having never had a sense of smell, mentioning her dad’s favourite joke: My daughter’s got no nose (we’ll refrain from including the ‘punchline’).  John Scadding and Duncan Boak then summed up proceedings and thanked the speakers for their contributions to what was a really informative, rewarding and, at times, emotional experience.

It is the first time that such a high-profile UK medical organisation has hosted an event on smell and taste disorders, and the support of the RSM is something that will help us in our goals around engaging with and educating the medical profession on these conditions.  Mr Sean Carrie, who runs a rhinology clinic at Freeman Hospital in Newcastle, made a great point when he talked about the partnership between SmellTaste and the clinicians with whom we have links being a means through which we can educate other healthcare professionals.  We look forward to developing our relationship with the RSM and we’d like to thank them for their support of our cause.

If you’re affected by a smell/taste disorder and would like to seek a referral to one of the clinicians mentioned in the article then visit the ‘Clinics’ page of our website for more information.

Louise Woollam writes a blog called the Parosmia Diaries which is a valuable resource for anyone affected by this condition.