Interview with WHO/Europe collaborating partner Long COVID Europe

“We are so grateful and happy to collaborate with WHO. It’s good to feel that the folks at the WHO recognize the issues we are facing and it looks like they are really doing their best, at different levels, to tackle the issue of the post-COVID-19 state. , commonly referred to as long COVID.

Long COVID Europe is a network organization which currently includes 21 patient associations, made up of around 200,000 people, based in the Member States of the European Region.

WHO/Europe has had an ongoing collaboration with Long COVID Europe since summer 2021, with the network participating in both the 71st session of the WHO Regional Committee for Europe (RC71) in 2021 and RC72 this year. year. In July 2022, the two organizations co-authored an article for The Lancet, calling on the Region’s health services to adopt integrated models of care to manage long COVID.

We spoke to Ann Li, who has chaired Long COVID Europe since its founding in 2021, to find out more about the organization, what it hopes to achieve and how a partnership with WHO/Europe could make a real difference for their work and the life of those who live with a long COVID.

How and why was Long COVID Europe created?

By the end of 2020, the UK had produced a set of guidelines to manage the long-term effects of COVID-19, and soon after, France followed suit by producing its own. I thought it was really important to know what other countries in Europe were doing, so first I contacted the person running Long COVID Germany.

As the discussions progressed, we realized that it would be more efficient to collaborate together, to create economies of scale and to be open to sharing resources, know-how and relevant contacts. So we started reaching out to other countries as well. Some had neither the time nor the resources to work beyond their own country’s initiatives, but fortunately many did. We now have a network of patient-run associations in Austria, Belgium, Finland, France, Germany, Greece, Hungary, Ireland, Italy, the Netherlands, Spain, in Sweden, Switzerland, Ukraine and the United Kingdom. join.

What are the main objectives of Long COVID Europe and what needs to be done to achieve them?

We have developed 3 objectives – the 3 Rs – in collaboration with WHO/Europe, where we

jointly call on governments and authorities to draw attention to the long COVID and its victims through greater:

  • knowledge recognition and sharing, where all services are adequately equipped, and no patient is left alone or has difficulty navigating a system that is unprepared or unable to recognize this very debilitating condition;
  • research and reporting, through data collection and case reporting, and well-coordinated research with full patient involvement, which is needed to advance understanding of the prevalence, causes and costs of long COVID;
  • rehabilitation, which is a cost-effective intervention and a good investment to rebuild healthy and productive societies; rehabilitation must also be safe so that people do not become sicker after treatment.

For these goals to be achieved, we need all countries in the European Region to recognize that long COVID is a serious problem, with serious consequences, and requires a serious response to prevent the lives of those affected from getting worse. – and not only on a level of physical health. We hear stories of so many individual tragedies, where people go through financial crises, face relationship problems, lose their jobs and fall into depression. The consequences are serious and multifaceted.

At a higher level, governments also need to realize that many people who have had COVID for a long time are unable to return to work – as research now clearly shows. This is a major problem for the Region’s economies, as well as a burden on the health services that are needed to support them.

Did you encounter any problems while setting up and operating the network?

I think the biggest challenge is that everyone involved in their country’s initiatives are, like me, long-time COVID sufferers, so we’re all dealing with exhaustion and illness while doing our better to support our associations. Carrying out the work in our own countries is exhausting enough, but for many people to take on the added burden of European work for our network is just too much. Over the past year and a half I have met many enthusiastic people willing to help, but some had to give up because they were just too sick, or they got better and then had to go back to work. and didn’t have time to continue volunteering with us. And of course, since we receive no funding, we rely solely on volunteers.

Long COVID Europe is in the process of officially partnering with WHO/Europe. How will becoming a partner help your network?

The WHO is, of course, highly valued for its role in health promotion, by governments, health authorities and the general public; so, by taking action on long COVID and partnering with Long COVID Europe, it not only shows its commitment to finding solutions to the problem, but gives the condition and our organization some seriousness. Recently, for example, I was asked to speak about the long COVID during a webinar organized by the WHO in Armenia and Uzbekistan. Without their support, I don’t think we would have been invited to talk about this topic. Collaboration and partnership really strengthen our name.

Have you and your members seen any changes in the number or severity of long-lasting COVID cases as the pandemic continues – and do you expect a further increase over the fall and winter? coming ?

Studies show that as long as COVID-19 exists, there will be people who develop long COVID. We have seen the number of people living with the disease increase dramatically since the start of the pandemic, both as new cases arise and due to many people not recovering. The emergence of new variants, such as Delta and the supposedly milder variant of Omicron, has apparently made no difference to the proportion of those who develop long COVID. Any infection with COVID-19 and its variants, whether mild or severe – and regardless of your age or general health, can lead to a long duration of COVID. We’ve even heard of people who had no symptoms of COVID-19 but then developed longer-term issues.

Unfortunately, it is likely that as people move indoors during the colder fall and winter months, we will see more COVID-19 infections, with many people developing a long COVID. This is why governments and health authorities must act now, both to warn people of the long risk of COVID and to invest in the research and rehabilitation needed to understand and manage the disease and deal with the enormous burden. that it represents for health.

Mary I. Bruner