At the 72nd Regional Committee held in Tel Aviv between 12-14th September, it was announced that Long COVID Europe has become a collaborating partner of WHO/Europe.
“We are so grateful and so happy to be collaborating with WHO. It is good to feel that people at WHO recognize the problems we are struggling with and it seems they are really trying their very best, on different levels, to tackle the problem of post COVID-19 condition, commonly known as long COVID.”
Long COVID Europe is a network organization that to date comprises 21 patient associations, made up of around 200 000 individuals, based in Member States across the European Region.
WHO/Europe has had an ongoing collaboration with Long COVID Europe since summer 2021, with the network participating at both the 71st session of the WHO Regional Committee for Europe (RC71) in 2021 and this year’s RC72. In July 2022, the two organizations co-authored a paper for The Lancet, calling for health services in the Region to adopt integrated care models to manage long COVID.
We spoke to Ann Li, who has been Chair of Long COVID Europe since its foundation in 2021, to find out more about the organization, what it hopes to achieve and how partnership with WHO/Europe could make a real difference to their work and the lives of those living with long COVID.
How and why was Long COVID Europe set up?
At the end of 2020, the United Kingdom had produced a set of guidelines for managing the long-term effects of COVID-19, and shortly afterwards France followed suit by producing some of its own. I felt it was really important to find out what other countries in Europe were doing, so initially got in touch with the person running Long COVID Germany.
Through discussion, we realized that it would be more efficient if we collaborated together, created economies of scale and were open to sharing relevant resources, know-how and contacts. So, we started to reach out to other countries as well. Some didn’t have the time or the resources to work beyond their own country initiatives, but fortunately, many did. We now have a network comprising patient-run associations in Austria, Belgium, Finland, France, Germany, Greece, Hungary, Ireland, Italy, the Netherlands, Spain, Sweden, Switzerland, Ukraine and the United Kingdom, with more in the process of joining.
What are the main aims of Long COVID Europe and what needs to happen for these to be achieved?
We developed 3 goals – the 3 Rs - in collaboration with WHO/Europe, where we
jointly call upon governments and authorities to focus attention on long COVID and its sufferers through greater:
- recognition and knowledge sharing, where all services are adequately equipped, and no patient is left alone or having to struggle to navigate through a system that is not prepared, or not capable of recognizing this very debilitating condition;
- research and reporting, through data gathering and reporting of cases, and well-coordinated research with full participation of patients, which is needed to advance understanding of the prevalence, causes and costs of long COVID;
- rehabilitation, being a cost-effective intervention and a sound investment for building back healthy and productive societies; rehabilitation also needs to be safe so people do not get 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 stop the lives of those affected from getting any worse – and not just on a physical health level. We are hearing stories of so many individual tragedies, where people are having financial crises, facing relationship problems, losing their jobs and falling into depression. The consequences are severe and multifaceted.
On a higher level, governments also need to realize that many people with long COVID are unable to return to work – as research now clearly shows. This is a major problem for economies across the Region, as well as a burden on the health-care services that are needed to support them.
Have you encountered any problems in setting up and running the network?
I think, the biggest difficulty is that all the people involved in their country initiatives are, like me, long COVID patients, so we are all coping with exhaustion and sickness while doing our best to support our associations. Carrying out the work in
our own separate countries is exhausting enough, but for many people taking on the burden of European work for our network on top of that is just too much. Over the last year and a half, I’ve encountered many enthusiastic people willing to help,
but some had to give up because they became just too sick, or alternatively, got better and then had to go back to work and had no time to continue volunteering with us. And of course, as we receive no funding, we rely solely on volunteers.
Long COVID Europe has officially partnered with WHO/Europe. How will becoming a partner help your network?
WHO is, of course, very well regarded for its role in promoting health, by governments, health authorities and the general public; so, by acting 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 a certain gravitas. Recently, for instance, I was asked to talk about long COVID on a WHO-organized webinar in Armenia and Uzbekistan. Without their backing, I don’t think we would
have been invited to talk on the subject. The collaboration and partnership really strengthen our name.
Have you and your members seen any changes in numbers or severity of long COVID cases as the pandemic has continued – and do you expect a further increase over the coming autumn and winter?
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 condition increase significantly since the start of the pandemic, both as new cases arise and as a result of many
people failing to recover. The emergence of new variants, such as Delta and the supposedly milder Omicron variant, has seemingly made no difference to the proportion of those developing long COVID. Any infection by COVID-19 and its variants, whether
mild or severe – and regardless of your age or general health, can lead to long COVID. We have even heard of people who had no symptoms from COVID-19, but then developed more long-term problems.
Unfortunately, it is likely, as people move indoors during the colder autumn and winter months that we will see more COVID-19 infections, with many people going on to develop long COVID as a result. This is why governments and health authorities need
to act now, both to warn people about the long COVID risk, and to invest in the research and rehabilitation needed to understand and manage the disease and to deal with the huge health burden it poses.