The July/August Newsletter
Here are some helpful links for you, if you are joining us from the newsletter.
(Oops! Have you missed the July/August newsletter? Scroll down–it’s at the bottom of this page 👇👇. And don’t forget to subscribe, and receive it in your inbox! Sign up at chrissikelly.com)
August 3rd event - Food Management
Interested in attending the August 3rd event in London on “Food Management: What am I supposed to eat?”. Email me at info@chrissikelly.com
Smell training kits
Find them at Scent Recover
A Novel Olfactory Sorting Task
A new academic paper based on a smell training technique I developed for myself. I’ll be bringing you a user friendly version, with video, in the autumn.
Online Parosmia Course on Sunday, July 28
The event is two hours long and starts at 7pm UK/2 pm EST/11am PST. To join, you must be a member of the free Network.
Longitudinal Study on smell loss - Dresden
If you participated in Professor Hummel’s study on long term outcomes with smell loss, please check in again and let him know how you are doing! Link here.
Welcome to the July and August 2024 newsletter! ☀️⛱
Whether you are trying to cool off on a beach, or are keeping cool in the workplace, I hope you are enjoying your summer. Some exciting events and other news for you coming up, so without further ado:
In this month’s newsletter:
In-person day event in central London on Saturday August 3rd. “Rediscovering food: an event for people with loss of smell. A collaboration between the University of London’s CORA (Centre for Olfactory Research and Applications) and ckos
Save the date! I’ll be in NYC on October 21 for a day long event on smell loss at Columbia University
Smell training kits: where to find AbScent approved smell training materials
I’ve had a new paper published, and maybe there’s something in it for you!
Online courses are the way to go for the many of you who can’t come to London. Check out the coming offerings—including one coming up on parosmia this weekend, 28th July
Some time ago, I helped Professor Hummel by distributing a a link to a longitudinal study on smell loss. This means checking in with people to get a progress report. Maybe you filled out his original survey? If so, he’d love to hear from you again.
Well-being, well-being, well-being. It’s what comes up over and over in our Network, and was a theme of my presentation at ISOT in Iceland in June. A few words about this, and how you can help yourself. We will be here to help!
There will be no drop in Zoom in August—I’ll be back in September!
Day course on food management, Central London, Saturday August 3
What am I supposed to eat??
This is an in-person course in central London for anyone with smell loss who struggles to eat and finds food a painful chore. The day will be in two sections: a spoken portion where I will be talking to you about how our brain perceives food, and what we can do to enhance it with either impaired, or lacking, sense of smell. There will be a lunch break where you can eat a packed lunch or go out to stretch your legs and buy a sandwich. In the afternoon, we will have a hands on tasting session. I'll be joined by my friend Kal Chaggar, founder of Umazing. There will be tasting comparisons, all kinds of condiments and things for you to try, and plenty of discussion about it!
You will receive a worksheet with information to take home, and plenty of other ideas.
The cost of the day is £50. If you are interested in attending, please email me at info@chrissikelly.com
Day training event in NYC, October 21
Save the date! I’ll be at Columbia University in New York City on Monday, October 21st, running a day-long event with Jonathan Overdevest, MD, PhD, Assistant Professor of Rhinology & Skull Base Surgery. I’ll be bringing all the expertise from my in-person courses in London to this fabulous venue at Columbia. There will be more information in September, so stay tuned. In the meantime, mark your calendar!
Get your smell training kit here!
Looking for a smell training kit? Scent Recover has generously supported the work of ckos and we have worked closely with them to create smell training kits of quality that reflect our principles. I give them the seal of approval! If you need to freshen your smell training supplies, why not give them a try? The owner of the company has had sensory loss herself and gets us.
One little idea, now published in a prestigious journal!
In 2021, after a bad case of Covid that once again damaged my sense of smell, I decided to try to ramp up my smell training to see if I could make it more challenging than just the twice daily “smell and observe” practice.
I hit on an idea which I then shared with my research colleagues, because I thought it might have wider application for self testing at home in a way that was objective.
Three years later, that idea has now been published in a distinguished journal, thanks to a collaboration with colleagues from the University of London and University of Dresden (in the person of Professor Hummel!). While the idea behind publishing in a journal is to establish parameters for further research, I think the usefulness of this training technique is most valuable to you, the patients.
What is it? How does it work? I’ll be creating a video in September that will give you step by step instructions for making this exercise yourself. If you’d like to read the scientific paper, which is free to view, see the top of this article.
Get your online courses here!
Online courses are the most accessible way to to learn more about your condition and feel empowered and confident about your self care.
There is a course on parosmia coming up this Sunday, July 28th, at 7pm UK/2pm EST/11am PST. Learn what we learned during the pandemic, and find out how parosmia (and phantosmia) affect mental health—and what you can do to help yourself. The event is free. To attend, you must be a member of the Network. Click the link at the top of the page to join.
Coming this autumn: an online course on supporting your well-being while you recover from your smell loss, another course that will be a deep dive in smell training, and more.
Throughout the pandemic, I’ve been a trusted voice of authority and resource, putting together the experiences of tens of thousands of people to create a resource that is patient centric. Tap into that knowledge through the ckos courses.
Longitudinal Study
Back in early 2023, I helped send out a survey being done by Professor Thomas Hummel and his team in Dresden. This is a longitudinal study—one that looks at people’s progress and changes over time.
Professor Hummel is hoping to invite people back who have already participated in this, so that he can see how everyone is doing. Getting answers to questions like these is the key to understanding more about our damaged sense of smell.
Please fill out the questionnaire again if you did so originally (and why not for the first time)? I’ll be reposting this link so that you can check in and let researchers know…how you are.
Link to survey! Thank you!
It’s not just my nose! You still don’t understand!
Over and over, we talk about the the effects of smell loss on our quality of life. In the ckos Network, we’ve had some interesting threads recently on mental health and why we can’t get through to our doctors on this. Why do our attempts to get them to understand so often fall flat?
One insight from the ISOT conference Iceland was that ENTs can’t treat changes to mental health. The well being issues are, of course, a reality. But they don’t see this as something they have anything to do with. And I have to say I have some sympathy with this. I wouldn’t consult a dermatologist for a problem with my knee. But we need a shift towards other kinds of support for people who have had loss of smell. I think this lies at the heart of the mismatch between patient groups and the HCPs who treat smell loss at this time.
For me, once you have been discharged from the doctor’s care, often with that terrifying phrase “there’s nothing else I can do for you”, there should be a place to go for further help. And that is what ckos is. Once everything has been checked and verified by an ENT to rule out red flag issues, the business of healing is something that happens—oh so slowly—with help from smell training and patience.
