In order to identify the relevant research issues in relation to Long COVID, the Long COVID Citizen Science Board (LCCSB) was created under the auspices of the Institute of Epidemiology, Biostatistics and Prevention at the University of Zurich (EBPI). The LCCSB is an advisory committee that gives priority to the experiences and opinions of people affected by Long COVID. The aim of the project is to systematically identify the needs of people affected by Long COVID and to find out in which areas these people think research needs to be conducted. The committee members met to exchange ideas for the first time at the start of May.
New solutions require close collaboration between everyone involved.
The EBPI recruited the members of the board (around 30) with the help of Altea and the Long Covid Switzerland support group. The LCCSB consists of around 20 people affected by Long COVID and up to 10 people who had been suffering from myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) for some time.
Interaction between science and the general public
“Citizen Science projects”, which are usually directed by professional scientists, aim to involve the general public in research projects and promote collaboration between scientists and the population at large. This, in turn, aims to ensure that the findings of publicly funded research projects benefit society and are relevant to those affected.
The project team hopes that the involvement of affected people will mean the experiences, complaints, and challenges of people suffering from the long-term consequences of viral infections will be better taken into account. Finding new solutions to Long COVID will only be possible through close collaboration between researchers, physicians, therapists, and patients.
“With the LCCSB, we wanted to empower those affected to play an active role in shaping research,” explains Professor Milo Puhan, director of the EBPI. “Only by communicating on an equal footing will we, as researchers, be able to correctly record the complex challenges posed by Long COVID and develop answers to all the relevant questions.”
Inclusion of chronic fatigue
The involvement of people with ME/CFS on the board is of crucial importance, as it is becoming increasingly clear that there are a lot of similarities between the two syndromes. There are clear overlaps in terms of the lack of diagnosis, the symptoms (in particular fatigue, exertion intolerance and cognitive dysfunction), the treatment approaches, which have been rather lacking up to now, and the stigmatization.
The Swiss Association ME/CFS (German) and the Swiss Society for ME & CFS (German) have been campaigning for recognition of this chronic neurological disease for many years. So far, however, there has been very little research into ME/CFS, despite the high disease burden.
Chronic fatigue syndrome has been under-researched to date as well.
Given the circumstances, it made sense for the first meeting to be held online. After an introduction to the topic by project director Milo Puhan, the participants split up into several small groups and discussed which topics are important to patients, and which questions they would like to answer. It soon became clear from the animated discussions that the disease has an impact on many areas of patients’ day-to-day lives.
Several urgent questions
Of course, the main issues identified by participants were medically related, in the areas of diagnostics, treatment, and vaccination. But they also had a lot to say about social and political issues, and particularly about issues relating to employment law. Those affected by the disease are looking for answers regarding disease burden, healthcare, insurance, management of family life, and integration into day-to-day life in the workplace.
The next steps
Over the coming weeks, the LCCSB project team will formulate potential research questions and pool them together to form a catalog. It is of great importance to the scientists that the contributions from the general public do not become distorted by the experts. This is the only way of successfully identifying the topics that are most relevant to those affected.
These people will then select the topics that are most important to them from this catalog of research questions and give them a weighting. The aim is to publish these research priorities as early as June, if possible, and to inform research institutions and authorities of the results.
