At #ISOT2024, representing patients with smell loss. How can their quality of life be improved in the short term?

Looking forward to speaking on behalf of patients

The beautiful conference space at Harpa Reykjavik also has great air quality. Very much appreciated by those of us who remain vulnerable. #ISOT2024 #longcovid

For the first time at ISOT, presentations by organizations for anosmic patients

Conference organiser to patient advocates at the close of the patient advocacy session at #ISOT2024: “you are not patients”. That neatly sums up the problem of smell disorder patient advocacy.

It was a great pleasure to speak at #ISOT2024 last week about patient care after smell loss, and represent those in our community along with anosmie.org, STANA Fifth Sense. Thanks to our organisers, Bill Hansson & Peter Mombaerts.

Thank you, Abhishek! Congratulations!

Once discharged from an ENT's care, we are not really considered patients. That doesn't mean the need for care stops. The current clinical approach to smell disorders misses out on other interventions that could improve quality of life. ENTs may not have all the answers.

From bench to bedside for those with smell loss? It will take a long time. From bedside to breakfast table? There is something we can do there, but it is not in the domain of ENT.

These are some of the ways that members of the ckos Network have found improvement in quality of life. While we wait for cures, there are still ways to improve quality of life.

In 2020, I devised a new smell training technique after my first Covid-related smell loss. Now it is published as NOST. link.springer.com/article/10.100… Many thanks to my coauthors, including Li Shubin, Thomas Hummel, and Barry C Smith

I'll be in NYC on October 21st, running a course for people who are living with smell loss with Jonathan Overdevest of Columbia. Looking forward to seeing members of the Network from the NYC area!

The ckos Network has in-person events in London & online courses to help ppl with smell disorders. Recovery can be so slow & many people are still in great need of support. For them, the promise of future research is not enough. Empathy. Peer support. Trusted information.

Our paper on olfactory training, which discusses how a decreased quality of life drives use of the practice, has just been published: link.springer.com/article/10.100… With thanks to Li Zetian, Thomas Hummel, and Bob Pellegrino

Empathetic peer support provides great comfort in the ckos Network. While we wait for new treatments, this valuable resource can help to make daily life bearable.

I'm reading Monty Lyman's The Immune Mind and loving it. It puts so many things into place. Inflammation, gut dysbiosis, depression, & low immunity are all things that I and my large community of long-term smell loss sufferers can relate to. Thank you for this wonderful book!

New courses for people who have lost their sense of smell coming this autumn. All courses are held within the ckos Network. To learn more 👉 chrissikelly.com #anosmia #parosmia #smellloss #lossofsmell

I'll be running a course on how to manage your smell loss at Columbia on October 21 with Dr Jonathan Overdevest and the CommonScents Team. Tickets are available now! Columbia Otolaryngology rb.gy/pexgj0

Struggling to eat after your loss of smell? Join me for a for a day course at Senate House in London. Learn how you can make food more interesting, whether you've had total or partial loss of smell. Barry C Smith InstitutePhilosophy eventbrite.co.uk/e/989234796907…

Does olfactory training improve brain function and cognition? A systematic review. pubmed.ncbi.nlm.nih.gov/36725781/#full…