Ground-breaking research conducted by research experts with AbScent’s Long Covid online group has recorded for the first time the wider impact of altered sensing on people’s daily lives. The study involved users of AbScent’s Covid-19 Smell and Taste Loss moderated Facebook support group from 24th March to 30th September 2020, which had 9000 members at the time. The research has been published in the peer-reviewed journal PloS One.
This is the first study of its kind to actively involve those experiencing anosmia (loss of smell), parosmia (distorted smell) phantosmia (phantom smells) and dysgeusia (changes to taste), in documenting the lived experience of these long-covid symptoms. AbScent members contributed thousands of posts and comments in response to research questions and gave feedback on the article before it was submitted for publication. The paper was warmly received by participants: “I think it’s positive news when five months ago we were not taken seriously and now we are”.
Key findings show that participants reported difficulty explaining and managing an altered sense of taste and smell; a lack of professional support; altered eating; appetite loss and weight change; loss of pleasure in food, eating and social engagement; altered intimacy and an altered relationship to self, others and the world.
Lead author on the research, Dr Duika Burges Watson of Newcastle University, says: “Our findings are significant because we now can show that the impacts may not be as ‘mild’ as many have been led to believe. While we do not yet know the full extent of the most severe impacts, we can show that some people are really struggling with malnutrition, mental health, and they are getting very little understanding or support.”
Professor Vincent Deary of Northumbria University Newcastle, lead psychologist on the research team added, “some people are also reporting a loss of connection to other people and the world. You don’t realise how important smell is to intimacy and engagement with the world until you lose it.”
We applaud this important work to understand the lived experience of people with smell and taste loss. Nearly 4 million people in the UK have experienced this poorly understood problem with no support. I see devastating accounts from people on a daily basis. Interest in taking part in this research was strong. People want their experiences to be recognized.”
Chrissi Kelly, Founder, AbScent
Professor Barry Smith, Director of the Centre for the Study of the Senses at the University of London said, “We rely on those with loss of smell to help all of us understand what it’s like to be without it, and though the detailed reports people give us of their distorted perceptions of smell we gain real insights into what is happening and how extensively it affects how we sense the world around us and ourselves.”
Smell and taste loss remains a key symptom of Covid-19, even among vaccinated people. Tim Spector's Zoe app has identified "altered smell", as separate from “smell loss”, in tenth place of current reported symptoms. One third (34%) of app users recorded altered smell as a symptom (22nd Sept). This illustrates that the effects of Covid-19 on the sense of smell go beyond simple loss of smell, and include both parosmia and phantosmia.
Four key findings from the study included:
- No food satisfaction
Taste is picked up by food receptors on the tongue, but flavour is the total sensory experience of food when combined with smell. Loss of smell therefore seriously affects flavor. Changes to smell mean that people have lost the ability to find joy and satisfaction in food. Some people lose appetite, are unable to eat and lose weight. Unexpectedly others gain weight as they eat more to try to recapture lost food satisfaction
- Intimacy becomes revulsion
Until it is gone, people do not realise that smell is an important factor in intimacy. One woman said, “His natural odour used to make me want him; now it makes me vomit.” Others report that kissing tastes bad. For some not being able monitor their own body odour led to loss of confidence and increased social anxiety.
- Disgusting smells
With parosmia - distortion of smell - disgusting smells are triggered by everyday scents and food items. Items like onion and garlic are common triggers and can smell like vomit or sewage. What was ‘fair’ can become ‘foul’; one person noted: “Poo now smelled better than coffee.”
Covid-19 related anosmia and parosmia have no set pattern of emergence and recovery and people found it lonely navigating this without professional support. People also found it difficult to explain their symptoms to loved ones and friends, and this created further barriers between them and others. Some with anosmia reported feeling detached from themselves, others and the world in general. Where much of life’s joy takes place around shared meals, cooking and socializing over drinks people felt isolated from participating in these social activities
The research also noted that healthcare professionals often overlook these serious consequences of smell and taste loss, and intervention focus tends to be on dietary adaptation and the olfactory detection of immediate danger (smoke, spoiled food, etc). As a result, many are turning to the likes of AbScent for help. Perhaps the key finding of this research was how much the support and understanding of others with smell problems, and the researchers, was therapeutic.
AbScent is a charity registered in England and Wales since 2019 and has created an unrivalled resource of trusted information delivered by a distinguished advisory board and working with the latest scientific and clinical evidence. AbScent advocates to increase understanding and raise awareness of the conditions and their impacts supporting research into smell conditions.
For help please visit AbScent’s website https://abscent.org .