How the AbScent Community changed medical understanding

Research experts working with AbScent’s Facebook group have recorded for the first time the wider impact of altered sensing on people’s daily lives.

‘Altered Smell and Taste: anosmia, parosmia and the impact of long Covid-19’ 

Duika L Burges Watson, Miglena Campbell, Claire Hopkins, Barry Smith, Chris Kelly, Vincent Deary

The study involved users of AbScent’s Covid-19 Smell and Taste Loss moderated Facebook support group from 24 March to 30 September 2020, which had 9,000 members at the time – group membership is now more than 31,000.

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 has been warmly received by the AbScent Community. One member sums it up as “positive news when five months ago we were not taken seriously and now we are”.

The AbScent community identified the main areas of difficulty as:

• 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
• altered relationship to self, others and the world.

Lead author on the research, Dr Duika Burges Watson 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.”

Our own Chrissi Kelly was closely involved in producing the research and was delighted with the response from the AbScent community. It demonstrates how important it is that these experiences are recognised.

Four key findings from the study

1. 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 flavour. 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.

2. 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.

3. 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.”

4. Isolation

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 socialising over drinks people felt isolated from participating in
these social activities.

Perhaps the key finding of this research was how much the support and understanding of others with smell problems, and the researchers, was therapeutic.

You can read the full published paper in the peer-reviewed journal PloS One.

October 04, 2021