Living with Covid19 - Redefining the research questions

Author Helen Mthiyane
Posted 2020.10.28

Martha Powell and Dr Elaine Maxwell, NIHR Centre for Engagement and Dissemination, share findings from a dynamic review of the evidence around ongoing Covid19 symptoms, and what research is needed next.

It’s becoming clear that Covid isn’t just an acute illness, but that many people will require longer term support for ongoing and often debilitating symptoms. We don’t know how many people in the UK are currently living with the ongoing effects of Covid19, but we do know that symptoms can affect every part of the body and brain.

Much research to-date has focused on the experience of those who were admitted to hospital, but community support groups report large numbers of people who managed their initial infection at home and report a different symptom trajectory. These people have often never been tested for the virus and are not included in the prevalence estimates for ‘Long Covid’

Our review differs from others in that it uses professional expertise to make sense of the small amount of empirical evidence together with accounts of  the lived experience.


Capturing the experience of patients

Our conversations with those that have ‘Long Covid’ have shown that Covid19 is not a linear disease but a cyclical one, with a range of interconnected symptoms. We’ve heard that people asking for help are told that they should recover in two to three weeks, but many individuals are still unable to work, study or care for dependents seven months after their initial infection.

In addition, without a clear diagnosis, people reported being doubted when trying to get support. We were told recently that someone who had been diagnosed by their GP as having ‘Long Covid’ and is now in month seven, called an ambulance because of a new symptom of fainting and dizziness and was told by the ambulance crew that it was caused by a panic attack.

In light of these compelling stories, we believe that the term ‘Long Covid’ is being used as a catch all for more than one syndrome, possibly up to four – post-intensive care syndrome, post-viral fatigue, long-term Covid infection and permanent organ damage. We also suggest that the lack of distinction between these syndromes could explain the challenges people have in being believed and accessing services.


What’s next?

In order to learn from these people and their experiences, we believe new research questions are needed. Researchers and service providers must cast their nets wider and a starting point would be to capture people’s self-reported histories to form of a working diagnosis which is then recorded on electronic clinical records This would allow researchers to draw on the strength of the NHS - the ability to link to a range of clinical data sets - to test our hypotheses, and I’m sure many others, on the nature of Covid’s long-term effects.

Researchers need to explore the different presentations and help the healthcare professionals to understand the range of symptoms. Whilst medical treatments are unclear, better understanding of the impact of living with Covid 19 and coping strategies is urgently needed.

We know our review isn’t complete. Although it sheds some light on this emerging phenomenon, it asks more questions than it answers. As new evidence on this topic appears, we will be updating our website and we invite people to work with us to develop our understanding of ‘Long Covid’.


How can you get involved?

  • Are you aware of any evidence we’ve missed in our Review on the nature and duration of ongoing symptoms? Or are there any resources for the public or healthcare professionals that could be added? Please let us know of any information at [email protected] 

  • You can view the full ‘Living with Covid’ review online  and post about it on social media using the hashtag #LivingWithCovid.


Dr Elaine Maxwell is the author of the review and content lead for NIHR’s Centre for Engagement and Dissemination

Martha Powell is the communications and marketing manager for the NIHR's Centre for Engagement and Dissemination