Fifth Sense Research Update October 2023
Welcome to our Research Update, the first of our newsletters with a focus purely on research. We have created this series in response to our Fifth Sense Members Survey.
This update includes calls for people in Norwich to take part in the UCL SmellCare Study and for two research projects at Edinburgh Napier University. The researchers at ENU have kindly agreed to be “in the spotlight” this time, sharing share a little about their studies, backgrounds and research interests.
The ENT Research Group at the University of East Anglia will be submitting lay summaries of recently published papers to include in these research updates. Andreas Espehana has started this off with a summary on a paper on the effectiveness of PEA-LUT supplements for improving smell loss and parosmia caused by Covid-19 infection.
If you gain value from reading this Research Update, please consider making a donation via Fifth Sense – JustGiving to support vital research and grow our services. Thank you.
CALLS FOR PARTICIPANTS
1. Smell Care Study, Norwich
Researcher Sanjoli Mathur from the Norwich Medical School at the University of East Anglia has been in touch with this exciting update:
The London leg of the Smell Care Study began in June and is now nearly halfway through. The participants have completed three months of digital smell training with great enthusiasm, providing valuable feedback. They also took part in a meetup, fostering community and offering insights to shape the future of smell care.
We are now recruiting participants for the Norwich leg of this study.
We are looking for participants to take part in this 6-month digital smell training feasibility study, starting October 2023. Participants will be asked to use our innovative digital smell training prototype in their homes.
Join us on this exciting journey and let’s start training those noses!
Participant requirements:
- People aged between 45 and 55 with smell disorders.
- People aged between 65 and 75 with no / minor smell loss.
- Participants must be based in Norwich.
- Should have normal-corrected vision (i.e., able to read text from a mobile device, with or without glasses).
- Should not be heavy smokers (i.e., more than 2 pack of cigarettes a day).
- Should not have allergies or hypersensitive reactions to essential oils.
Interested? CLICK HERE to fill out an expression of interest form.
If you have any questions you can contact the team at smellcareuk@gmail.com
2. Barriers to treatment for smell and taste disorders in Scotland
Researchers, Ethan Shapiro and Duncan Carmichael, from the School of Applied Sciences at Edinburgh Napier University are seeking to interview people in Scotland about their experiences of seeking treatment for smell and taste disorders.
You can read more about Ethan and Duncan’s research interests in our ‘in the spotlight’ section below. This is what they would like potential participants to know about the study:
We are conducting a research project that hopes to identify and understand potential barriers to treatment for smell loss in Scotland.
We are looking for participants to take part in an interview, either in person at Edinburgh Napier University, Sighthill Campus, or online using video conferencing software. Interviews will take approximately 30-60 minutes to complete. During the interview, we will ask about your experience of smell loss and your experience of seeking medical treatment for this condition.
If you agree to participate in this study, you will be asked to provide some basic demographic information, such as your age and sex. This information will not be linked to you and is only collected so that we can describe the demographics of our participants.
Initially, we are seeking to recruit 6-8 participants from different areas and settings (e.g., city/rural) in Scotland, so we can explore the range of different experiences of trying to get treatment. Later, in 2024 we plan to open up the study to more participants.
If you have any questions, or if you are interested in taking part in this initial phase of the study, or would like to join their mailing list to find out more about how you can get involved as the research progresses, please contact the researchers at d.carmichael@napier.ac.uk or e.shapiro@napier.ac.uk.
3. Developing a multisensory smell retraining programme
Postgraduate research student Emily Spencer, from the School of Applied Sciences at Edinburgh Napier University is hoping to reach a few more people in the Edinburgh area before her smell training study closes.
You can read more Emily’s preliminary results in our ‘in the spotlight’ section below. If you’re interested in joining Emily’s study, here’s what you need to know:
I am looking for participants over 18 years old who are currently experiencing post-infectious or post-traumatic smell loss that has lasted more than two weeks to take part in a training-based experiment.
This study involves the daily sniffing a set of odours for a duration of around four months. You must be able to travel to a laboratory at Edinburgh Napier University, Sighthill Campus, to take part. At the initial testing session, smell training kits will be provided for you to take home with you, but you will need to participate in a smell test in the laboratory once every two weeks for the duration of the study.
If you are eligible and agree to participate in this study, you will be asked to provide your age, sex, and the cause of your smell loss. This information will not be linked to you and is only collected so that we can describe the demographics of our participants.
To register your interest please contact at Emily.spencer@napier.ac.uk or visit our website: https://www.fifthsense.org.uk/the-smell-training-study-participant-recruitment/ for further information.
IN THE SPOTLIGHT
We are inviting individual researchers to share a little about their backgrounds and research interests. Thank you to the researchers at Edinburgh Napier University who have agreed to be “in the spotlight” this time. We look forward to receiving updates from them as their research progresses.
Dr Duncan Carmichael and Dr Ethan Shapiro, Edinburgh Napier University
Hi, I’m Dr. Duncan Carmichael. I’m an Experimental Psychologist with a background in perception research. I’m interested in olfaction and understanding more about how our senses interact with each other. In particular, I’m keen to understand how this knowledge can be applied to real life applications, such as improving smell retraining programmes.
My colleague, Dr. Ethan Shapiro, is an Organisational Psychologist who specialises in qualitative research methods. He has considerable experience of conducting studies with medical professionals and patients. With his expertise he can support the methodological focus of our research.
We recognise the unique experiences that those affected by smell loss have. There is currently very little research exploring the experiences of people receiving or seeking treatment for smell loss in Scotland and that is something we’re looking to change with our study into barriers to treatment for smell and taste disorders in Scotland.
There is evidence to suggest that there may be difficulties in receiving medical treatment and we want to learn what this has been like for people in Scotland. That’s why we’re keen to speak with those living with smell and taste impairment in Scotland about issues they’ve had with seeking treatment.
This initial study will hopefully be part of a wider piece of research where we later incorporate the perspectives of medical professionals and what they see as the challenges in diagnoses and treatments for those with smell loss. Our hope is to increase awareness of this area to remove potential barriers to treatment for those living with smell loss.
We do hope that members of the Fifth Sense community in Scotland will come forward to share their experiences. If you live in Scotland, please get in touch so we can include you in the study or add you to our mailing list to hear about further opportunities to share your experiences with us. Thank you.
PhD Student Emily Spencer, Edinburgh Napier University
Hi, I’m Emily, and I am a PhD student at School of Applied Sciences, Edinburgh Napier University. My primary research area is in sensory perception, and I am currently investigating the ways in which the olfactory senses can be retrained following a loss of the sense of smell. To do this, I have been recruiting participants to take part in a smell training study that involves the structured sniffing of a set of different odours so that I can test which factors are important for olfactory recovery. I am hoping that this will lead to the development of better treatment options for people dealing with olfactory disorders.
This study takes 16-weeks per participant and involves 9 testing sessions (i.e., once every two-weeks). So far, around 26 participants have completed their training, and we have found some interesting results. It’s early days, and I have not yet conducted a full analysis of the results, but the results so far have been very promising.
Initial findings suggest that people with a normal sense of smell benefit quite considerably from smell training – in fact, all of my participants fitting that description have reached ‘super smeller’ scores (>41.5) by the end of their intervention. Those with smell loss have also shown improvements, and it seems that using pleasant and edible odours during smell training may have slightly more positive effects on olfactory performance than odours that are inedible, or unpleasant.
One thing I think is important to note is that, even when participants with smell loss or parosmia have achieved improved scores they still do not feel as though they have noticed much change to their sense of smell in their daily life. This has been the case even for some in this group who have reached ‘super-smeller’ scores.
Interestingly, although previous research tends to suggest that post-traumatic olfactory loss is less likely to be recovered through smell training, I have received a lot of positive feedback from participants that fit that category. For example, one participant who lost his sense of smell following an operation for a brain tumour has shown an increase in his olfactory abilities throughout the testing sessions. While using the sniffin’ sticks during his sixth testing session, he was able to smell turpentine – the first thing that he had smelled in years!
Another participant, who has been continuing to train at home after completing her training 3 months ago emailed me to let me know that, despite her significant smell loss following an operation, she can now correctly identify odours that her husband places in jars, and smell her candles and bath products again. She has also regained some of her taste, and was excited to be able to enjoy some of her favourite ice cream again.
Given that I have had such positive feedback, and a lot of participants seem keen to continue their training, I am considering inviting them for a follow up test in a few months’ time, so that they have the opportunity to find out if their own training has worked, and so that we can collect more data about how their sense of smell has improved.
Recruitment is still ongoing, and I am hoping to reach a few more people before drawing this study to a close, so please do get in touch with me if you would like to get involved.
However, the invaluable feedback and insights provided by those who have taken part in the study so far has contributed immensely to our understanding of olfactory perception following smell loss. As we continue to analyse the data, I am hopeful that our findings will lead to more effective strategies to recover and restore the sense of smell.
RESEARCH SUMMARY
The ENT Research Group at the University of East Anglia have kindly agreed to write summaries of recently published papers for our members. Many thanks to Andreas Espehana for providing our first summary.
Can PEA-LUT supplements make smell training more effective?
We have been asked whether PEA-LUT(palmitoylethanolamide and luteolin) supplements can make smell training more effective. Here Andreas Espehana summarises a paper exploring whether PEA-LUT is effective for improving smell loss and parosmia caused by Covid-19 infection.
Paper: Parosmia COVID-19 Related Treated by a Combination of Olfactory Training and Ultramicronized PEA-LUT: A Prospective Randomized Controlled Trial, published in Biomedicines 2023, 11, 1109. https://doi.org/10.3390/biomedicines11041109
This study by Arianna Di Stadio et. al aims to investigate the effects of ultramicronised PEA-LUT, on smell loss and Parosmia. PEA-LUT is labelled as a food supplement that is believed to have anti-inflammatory properties. The hypothesis here is that PEA-LUT will have improve inflammation in the olfactory nerve (the nerve that sends signals to the brain from the nose) caused by COVID-19 infection. The study that was done in Naples recruited participants who had developed smell loss from COVID-19 that persisted for more than 6 months. They compared patients receiving PEA-LUT alongside smell training to patients only receiving a placebo (multivitamin).
The results the study found that patients taking PEA-LUT showed improvement in their smell compared to the group taking the placebo. However, it did not seem to improve parosmia compared to the control group.
While the outcome of the study may seem promising, it is a relatively small study which affects the quality of the evidence it provides. Given the small study population and deficiencies in the study design, we believe that these results should be interpreted with great caution. Further studies with larger study population and a more robust study design are required to further test whether PEA-LUT can truly improve smell loss and parosmia.
Andreas Espehana, Rhinology and ENT research group of UEA.
QUESTIONS, COMMENTS AND SUGGESTIONS
If you’ve got any questions, comments or suggestions about this Research Update, we’d love to hear from you.
Please get in touch with Mags Robinson, our Support and Information Officer, at info@fifthsense.org.uk.
Thank you.
