By Tamsin Zandstra
Many Long COVID patients report ongoing loss of smell or Parosmia. On July 26th the Long COVID Initiative met with Chrissi Kelly, the founder of AbScent, a non-profit that works to help those with smell disorders through research, support groups and smell training.
Chrissi lost her sense of smell in 2012 and subsequently set up AbScent. Chrissi has taken courses with Professor Thomas Hummel, the author of the first research paper on smell training at the University of Dresden, Germany. Her techniques, used alongside smell training kits, have helped people to reconnect with their recovering sense of smell. Chrissi also speaks at conferences, organizes workshops, online events, and private sessions to support people with the smell loss.
These answers have been modified and combined for length and clarity.
What is this mission of AbScent and why did you start it?
AbScent began as a Facebook group back in 2016 and became an officially registered charity in the United Kingdom in 2019. I lost my sense of smell in 2012 and was struggling to find patient groups or support networks that were reliable so I created my own. AbScent quickly grew and we established our website and started sharing a smell training app and questionnaire that allowed us to gather data and the stories of people suffering with smell loss. Currently we have 85,000 actively engaged members of the charity and in addition there are many who interact with us in other ways with over 2,000,000 people having visited AbScent’s website in 2021.
The charity provides information on smell loss, practical advice on recovery and supports people who have lost their sense of smell and are going through extremely disorienting and depressing experiences through patient groups.
How is AbScent helping people with COVID-19?
AbScent had a quick response to the pandemic. The first day of lockdown in the United Kingdom was March 24, 2020 and within a couple of weeks AbScent’s Facebook group was swamped with new people facing loss of smell from COVID-19 looking to share their experiences and obtain advice. A new Facebook group to provide support for and connect those with COVID-19 was quickly established, overtaking the number of users in the original group. There is also now a private network that allows AbScent to connect patients with researchers.
What is the relationship between Long COVID and loss of smell?
Loss of smell is considered one of the sequela of COVID, and it does last a long time. Therefore we often see it discussed with other Long COVID symptoms. Smell loss is a reflection of an injury to the olfactory system, and healing can take a long time. We suspect there may be a small number of people whose loss may be very persistent, but we are still observing the recovery time span in real time. AbScent advises that patients speak to Long COVID groups to discuss the topic more broadly.
Is there an estimate of how many people have lost their sense of smell because of COVID-19?
It is extremely difficult to know exact figures due to how data is collected but it is estimated that around 60% of people lose their sense of smell because of COVID-19. At the start of the pandemic people with milder forms of the Alpha and Delta variants of COVID-19 seemed to be the most likely to lose their sense of smell; however, each variant faces its unique challenges.
What is parosmia and is it a common problem for patients dealing with COVID-19?
Parosmia is when smell appears distorted and often unpleasant. People often struggle with this following the loss of smell from a virus or injury. It is not a permanent or harmful condition however, it is often difficult to live with and impacts people’s eating, mental health, relationships and mood.
Around 50% of people who lose their smell from COVID-19 have parosmia. The majority develop this around three months after being diagnosed with COVID-19. Despite being unpleasant, those with parosmia have a better chance of recovery which can often leave those without it feeling very discouraged and hopeless. AbScent has support groups for both groups of people and is able to connect them with research projects.
Are there any groups or demographics who are particularly affected by loss of smell because of COVID-19?
From what we have seen, loss of smell seems to impact younger women the most. However, AbScent interacts with people who have lost their sense of smell through Facebook so getting an understanding of how different demographics are impacted is extremely difficult. The majority of Facebook users in our groups are women so this is who we receive the most input from.
Are there any effective treatments to help people recover and regain their smell and taste after suffering from COVID-19?
At the start of the pandemic AbScent took and shared the advice of the British Rhinological Society and ENTUK. Two treatments are recommended, the first being peer support with smell training, as a combined strategy and the second the use of steroid nasal sprays. Other treatments including taking vitamins and supplements like Omega 3 and Zinc are also being recommended and the use of Platelet-rich Plasma injections are also being researched.
What is smell training and what are the benefits?
Smell training is a supportive technique that can help people regain their sense of smell. This strategy has somewhat of an image problem among patients. However, it is important for people to understand the benefits and be patient in using this method. Smell training requires a great deal of patience and you need to do it twice a day for a couple of minutes for a minimum of between four and six months. You need to concentrate and practice mindfulness when training which can be difficult for people to do as they think smell training happens between the odor and the nostril. This is not the case and you need to think about what you are smelling and recover images from the past that activate the brain to help the olfactory bulb become healthier. It is a question of time and people need to be committed and persistent with their training.
How can loss of smell impact people’s health, generally?
Loss of smell has a huge impact on the mental health of people. Much like a broken leg, you have to wait for smell to heal which can cause profound distress and acute anxiety in people, especially during the first three to six months of adjusting to living without smell. For people with Parosmia they also smell extremely unpleasant smells which cannot be escaped.
What is your advice to people who are feeling hopeless because of their symptoms?
People need to talk about their experiences whether it be with family members, close friends or patient support groups. AbScent can help connect people and provides a safe space for people to talk about what they are facing. Doctors also need to be sympathetic to their patients. Often patients are told that because they have not regained their sense of smell within a year they should give up hope; however, this is not the case. People are recovering after 25 to 26 months. It seems that COVID-19 is delaying recovery and the cells that allow us to smell are not regenerating as quickly as they normally would so it can take a couple of years for people to smell again.
What is the correlation between smell and taste? Do you know of a correlation between loss of smell and altered eating?
Smell and taste and interconnected. When people lose their sense of smell they are only left with the ability to taste salt, sour, sweet, bitter and umami which can be extremely bland and distressing. This has led to altered eating for many people as they no longer experience the aroma of food, often losing cravings or hunger, forget to eat or find it unpleasant to do so.
What research is AbScent working on/funding etc. as relates to COVID-19?
AbScent has recently funded two research grants. I also work directly on research at the University of London and the University of Reading. I always work from the position of a patient advocate, connecting researchers and patients. A lot of research done with patients is not optimal and I like to ensure that things are done in a way that patients feel valued, acknowledged and have a say in the kind of research that is being done, based on what will directly help them.
We thank Chrissi Kelly for her time and the continued impact she is having supporting those who have lost their sense of smell.