The message of hope your doctor may not tell you about

Don’t give up hope for recovery from covid-19 smell loss

An article published in the British Medical Journal (BMJ) on 27 July 2022 makes a plea for health systems around the world to be ready to provide support for the millions of people living with altered smell and taste as a result of Covid-19 infection.

It is published alongside a piece of research that draws on 18 studies involving 3,699 patients that examines the prognosis and persistence of smell and taste dysfunction in patients with covid-19. The researchers conclude that around 5% of people are left with smell and taste disorders six months or longer after infection. 

Both the research paper and the editorial highlight the emotional impact of the loss, and the adverse effect on quality of life. In some cases this can lead to malnutrition and eating disorders. The editorial also brings focus on the distress of managing day to day living with parosmia.

The importance of consistent objective testing of the sense of smell is raised in the research paper and repeated by the editorial. Individuals are not good at rating their own ability to smell, and objective smell tests repeatedly show a wide margin between the self-reported and the actual ability to smell. 

In terms of treatment, olfactory training – smell training – is still the only evidence-based treatment recommended. The authors note that olfactory training supports the regenerative capabilities of the olfactory neuroepithelium, the area affected by Covid-19. They also mention the use of steroids, vitamin A and supplements of alpha lipoic acid and omega 3 fatty acids, although they acknowledge the evidence of benefit is very marginal.

The research and accompanying editorial in this high profile publication are important in raising awareness of the issues of smell disorders. It urges the need for persistent smell and taste problems to be taken seriously and included in doctors’ efforts to address the challenges faced by long Covid patients. To be recognised in this way is good news for everyone affected.

However, the material reviewed in this study only looked at time intervals up to 180 days from onset. This might lead doctors to conclude that recovery after six months is unlikely. This is because doctors should only use the evidence in front of them, and the study only looks at cases up to six months, not beyond.

In the AbScent community, we know there is no six month cut off period. We regularly receive messages and posts from people sharing their recovery stories after more than two years. As research continues, we expect the evidence to extend to demonstrate this, but for now, the bad news is that many people will be told that if they are not recovered within six months, they are unlikely to regain a good experience of smell and taste.

The real life experience of our community says never give up hope. That’s a message that we’ll continue to share through stories of recovery and the lived experience of our members.

The paper referred to is Prognosis and persistence of smell and taste dysfunction in patients with covid-19: meta-analysis with parametric cure modelling of recovery curves, BMJ 2022;378:e069503 

https://www.bmj.com/content/378/bmj-2021-069503

And the opinion piece is The burden of prolonged smell and taste loss in covid-19, BMJ 2022;378:o1895

https://www.bmj.com/content/378/bmj.o1895

August 04, 2022

Posted in Covid.