How charity Fifth Sense is offering Long Covid guidance, support, and hope for those with post-viral smell and taste loss

In the latest episode of our Covid Matters podcast, we spoke to Duncan Boak; founder and CEO of the smell and taste disorder charity Fifth Sense. We learned from Duncan how Fifth Sense is helping people whose sense of smell and/or taste has changed since having Covid-19. He also provided insights into the charity’s background and wider work, and explained some of the science of how a virus affects odour detection.

Duncan shared his own story of losing his sense of smell following an accident where he sustained a head injury. Although it’s known that physical trauma to the head can damage smell or taste sensation, Duncan found that health professionals lacked knowledge about his condition, or about any treatment options that there were. He also found some people to be dismissive of his loss, downplaying the impact that it had upon various aspects of his life. His journey led to him setting up Fifth Sense in 2012, with the aim to provide support and advice for those affected by an absent – or reduced – sense of smell, and to educate people about the reality of living with those changes.

In the podcast, Duncan highlights some of these challenges, learned from his own lived experiences as well as from the Fifth Sense community that he has helped to bring together. For example, losing what is, as Duncan points out, “one of the five ways in which we connect with the world around us” can reduce peoples’ enjoyment of food and drink, resulting in them eating less and consequently losing weight. This, in turn, can lead to inadequate nutrition. A changed relationship with food can impact mental health and social eating, and if a food or drink that brought particular pleasure now tastes unappetising, a grief process may be triggered. The lack of awareness of, and empathy for, the effects of not being able to smell can mean that those affected suffer in silence, feeling isolated and alone. For those with Long Covid, there are typically other symptoms that they are also having to contend with.

Smell and taste disorders include:

Anosmia (loss of the sense of smell)
Hyposmia (a reduced sense of smell)
Parosmia (a distorted sense of smell).
Phantosmia (“phantom” smells. A common one is smelling cigarette smoke when nobody smoking nearby)
Ageusia (loss of the sense of taste)
Hypogeusia (a reduced sense of taste)
Dysgeusia (a distorted sense of taste)

Most people notice that their sense of smell and taste is temporarily reduced when they have a cold, or the flu. However, viruses can occasionally trigger longer-lasting changes: around 5% of people who have had Covid-19 report smell and taste issues six months after infection. Whilst anosmia can cause sadness and frustration, people can find distorted or phantom odours distressing and pervasive. This may be especially so if someone’s perception of a scent changes from pleasant to highly unpleasant (as is, unfortunately, more common than the reverse). There are also risk implications of smell dysfunction: for example, people with anosmia or hyposmia may not smell smoke, or detect a gas leak.

Taste disorders occur less frequently than smell disorders, and tend not to follow a viral infection. Yet, as smell plays an important role in flavour perception, the effect of anosmia or hyposmia upon eating – an activity we engage in multiple times a day - can still feel upsetting, and hard to adapt to.

Although these disorders are quite rare, Duncan recalls a spike in the number of visits to the Fifth Sense website in March 2020, after the charity posted specific Covid-19 information in response to the pandemic. Parosmia is the most commonly reported from the list above among people who have Long Covid, sometimes appearing a few months after recovery from the virus. It has a tendency to fluctuate in how frequently it presents, and can be a troublesome and disorientating experience. The Fifth Sense website has a dedicated Covid-19 section offering printable information sheets, research news, and tools and techniques to try. There are links to the charity’s platforms for peer support, where those with taste and/or smell loss can support and share tips with one another.

With variations in the timescales and pathways that recovery can take, living with the uncertainty that brings can be stressful. However, the majority of people do recover from smell and taste dysfunction, and Duncan says that this is more likely when the onset is post-viral. Fifth Sense work with a small team of clinicians with expertise in this area, who are sometimes involved with Fifth Sense information and training events. Whilst treatment success and length can be a very individualised journey, Duncan speaks positively about new research and its potential implications.

Towards the end of the podcast, Duncan answers questions from members of the covid:aid community around phantosmia and parosmia, and around the benefits of specialist referral for diagnosis. He shares some of Fifth Sense’s upcoming plans, such as partnering with a gas distribution company with the aim of developing a detection device. This would transform home safety for those with anosmia or hyposmia, offering reassurance in the event of a leak.

The charity intends to deliver more training to health professionals, hoping that better education can improve understanding of smell and taste disorders, and eliminate trivialising responses like Duncan himself encountered. Duncan encourages anyone struggling with smell and taste changes to visit the Fifth Sense website, or contact the charity for advice or signposting around support and treatment options available.

You can listen to the podcast on all major platforms by searching for 'Covid Matters'. and on our podcast page

Takeaway quotes from the episode

“Smell connects us to places, it helps us form memories of places we visit, and memories can be triggered through smelling things. Then there’s the emotional connection to people as well, if you think about how important the sense of smell is to partners, children… babies, and how important it is as a bonding thing”.

“I sort of boxed it off and didn’t really engage properly with my loss, and then spent the next six years thinking I was one of the only people in the world with this. With something that, you know, no one knew anything about and no one understood”.

“A big part of how we work at Fifth Sense is that we work with the people we represent. And it’s your stories and your experiences and challenges that often aren’t being addressed, apart from through the work that we’re doing. But through working together, we can change them”.

Resources from Fifth Sense

Smell disorders and Covid-19

For more information about smell disorders and Covid-19 visit the Fifth Sense Long Covid Hub
Fifth Sense has a range of Information sheets and videos
Learn more about Parosmia and Phantosmia with ENT Consultant Mr Sam Leong with this YouTube video
Read Joanne’s story of her recovery from parosmia which she experienced after losing her sense of smell due to a virus

Smell and Safety

If you have a problem with your sense of smell it’s really important that you take steps to stay safe from dangers such as gas, smoke and spoiled food.
Read more about safety on the Fifth Sense website here
Fifth Sense are working in partnership with Cadent, the UK’s largest Gas Distribution Network, to raise awareness of the importance of staying safe if you have a poor or no sense of smell. We recommend that people sign up for the Priority Service Register. This is a free service to support those who may be vulnerable to potential dangers, including those of us who are unable to smell gas. Find out more about the PSR here.
For more information on living safely when you have a poor sense of smell, watch our SmellSafety video: SmellSafety with Cadent Gas and FlavorActiV - YouTube

Smell Training

Smell training is something that some people can find helpful and it’s easy to do with things you have at home – spices in your kitchen cupboards for example.