In Europe, Long Covid has impacted around 36 million people over the first three years of the pandemic. However, the disease’s complexity, novelty, and often invisible symptoms, combined with a lack of public understanding, have led to many patients being dismissed or doubted by doctors, policymakers, colleagues, and even their loved ones. As a result, those affected have unmet needs with the loss of approximately seven million quality-adjusted life years (QALYs) across Europe and substantial social and economic costs for society. So, what can be done to ensure that Long Covid is taken seriously by society and patients receive the support they deserve?
Ahead of the STOA workshop ‘Long Covid: Current Realities, Future Directions’ on 30 September, the ESMH spoke with two of the main speakers expected to attend the event : Frederico Guanais, Deputy Head of the Health Division of the Organisation for Economic Co-operation and Development (OECD) and Gez Medinger, a patient advocate and author of ‘The Long Covid Handbook’
Although COVID-19 is now considered by most a distant memory, for millions, it remains a harsh reality. In fact, approximately 6 in every 100 people who have COVID-19 develop post-COVID-19 conditions, most commonly known as Long Covid. They face persistent debilitating symptoms that can last months and even years, and disrupt their daily activities, limit their ability to work, and reduce their overall quality of life.
Over 200 symptoms have been recorded in people living with post-COVID-19 condition, from aches and pains in muscles or joints to changes in taste and headaches. “They can affect various organs and range from mild to severe, becoming very debilitating and even disabling for those who experience them,” explained Frederico Guanais, Deputy Head of the Health Division of the Organisation for Economic Co-operation and Development (OECD).
However, as Gez Medinger, a patient advocate and author of ‘The Long Covid Handbook’, notes, these symptoms are also not consistent. They can vary even within the same individual, from one moment to the next, or from one hour to the next, or from one day to the next. One of the most common symptoms appears to be fatigue, but, as Mr Medinger clarified, this is much more intense than a general sense of tiredness.
Gez Medinger, a patient advocate and author of ‘The Long Covid Handbook’: “As a healthy young person in my 20s and 30s, I would do absolutely everything I could to exhaust myself. I used to run my own company, working all-nighters and staying up for 50 hours straight while travelling around the world, dealing with jet lag, and running marathons. Nothing comes close to the fatigue that you feel with Long Covid. It’s absolutely crushing. One of the ways I described it was, it’s like being run over by a truck and then being chloroformed. So, we really need a new word for it because fatigue doesn’t do it justice.” – Read the full interview with Gez Medinger
The challenges of an ‘invisible’ illness
Currently, there are no official, evidence-based guidelines or specific medical tests to diagnose Long Covid. Doctors primarily rely on a detailed medical history, physical examination, and existing tests that can indicate underlying issues related to post-COVID conditions.
Frederico Guanais, Deputy Head of the Health Division of the Organisation for Economic Co-operation and Development (OECD): “So, it’s not like the detection of the COVID-19 infection itself, where you actually have biological tests to detect it. That is a challenge. It also means that people with Long Covid usually take a long time to get an accurate diagnosis. They can go from doctor to doctor with complaints before knowing they have Long Covid, and thus navigating the disease can be quite a challenge for them, as the healthcare system isn’t fully prepared to meet the needs of this population,” – Read the full interview with Frederico Guanais
“From the patient’s perspective, the fact that there is no test to diagnose it means that you have people saying, ‘I don’t believe you have it.’ This is the sort of gaslighting problem that can happen in the medical environment as well,” said Mr Medinger.
The complexity of the diagnosis, along with the fact that people do not show any outwardly visible condition and that these symptoms might fluctuate over time, makes people living with Long Covid to face stigma, shame, and injustice. According to Mr Medinger, “the first challenge is getting people to care about it, as it doesn’t show visibly. Many people suffering from Long Covid do so quietly, and they may even appear normal for brief periods when interacting with others. What those people don’t see is that managing that short interaction requires them to rest for six hours beforehand, and they might end up with a huge increase in symptoms (also known as a ‘crash’) the next day as a result.”
Long Covid’s impact on the European workforce and economy
“It’s clear that Long Covid has a significant impact on the physical and mental health of those affected, as well as their personal and professional lives,” explained Mr Guanais.
Long Covid, as reported by the OECD, is widening the inequalities that the pandemic already revealed. Factors like ethnicity and education seem to affect not only the likelihood of developing Long Covid, but also the severity of its consequences for people’s health and economic well-being. According to the European Commission’s data, in 2021, Long Covid was estimated to cause a reduction in the workforce by about 364,000 to 663,000 people, and in 2022 by 621,000 to 1.1 million, due to lower productivity, increased sick leave, fewer working hours, and higher unemployment or people leaving employment altogether.
“It’s very difficult, and it heavily depends on your employer’s understanding of the situation, how flexible your work is, and the nature and demands of your job. Also, it depends on where you fall on that spectrum of severity of the symptoms. If you are near the bottom, which isn’t too bad, you might be able to make some adjustments and manage okay. However, for everyone else, it’s a major problem. So, it poses a challenge at all levels, for the government, the workplaces and the economy,” highlighted Mr Medinger.
The reduction in workforce across OECD nations has resulted in an estimated loss of at least $141 billion in lost wages alone. Furthermore, even after returning to work, many people reported having to reduce their hours compared to before they fell ill. It’s also worth noting that gender appears to be a factor, with women being more likely to develop Long Covid and more likely to be affected by ongoing symptoms than men.
“The highest prevalence of Long Covid is found among middle-aged women. One social explanation is that women are more likely to work in healthcare and social care, so they may have been at greater risk of COVID-19, especially during the pandemic’s first waves, when the risk of Long Covid was highest from the original SARS-CoV-2 strain. So, connecting the dots, this places a particular pressure on the healthcare workforce, which, in turn, negatively affects women, and it’s something we need to pay attention to,” mentioned Mr Guanais.
What should Europe do to address it?
As the OECD has highlighted, patients have been instrumental in driving progress on Long Covid. During the pandemic, many countries prioritised swift policies to contain the virus, often at the cost of essential aspects of person-centred care. In response, patients and advocacy groups, like e.g. Long Covid Europe, have stepped up, pressing for Long Covid to be recognised as a genuine condition, expressing their care and support needs, and even leading research efforts. In particular, online communities like Reddit and Facebook have become vital spaces for people with Long Covid, providing support when family, friends and even physicians were sceptical, and allowing them to make sense of their healthcare experiences, and build a shared understanding of the condition.
“Patient groups were, and remain, a highly influential force, particularly early on. Initially, this condition didn’t have a name, but as the groups started to use the term “Long Covid”, it eventually stuck. So yes, patients are filling gaps, but it’s not always a good thing that they have to, as some of them end up trying quite risky treatments. This is another reason why institutions, governments, and health bodies should see the urgency here, as the responsibility to address the gaps in Long Covid care is theirs,” said Mr Medinger.
“Establishing a more coordinated approach to developing case definitions, clinical guidelines, and reporting on the long-term impacts of diseases is essential, something we realised we did not do well during the COVID pandemic.” clarified Mr Guanais. According to the OECD, countries must adopt a cross-sector response to Long Covid, addressing not only health impacts but also its effects on well-being and workforce participation. This should also include financial protections, as they are essential to ease the burden and prevent the condition from exacerbating existing inequalities.
“I believe we’re lagging behind and still need to establish the foundations for better understanding how to diagnose and measure Long Covid. Once this is in place, we can proceed to develop integrated health and social services that meet the specific needs of those affected by this disease,” commented Mr Guanais. He also added that “We should work together to overcome this invisibility problem and to develop the best policy solutions to address Long Covid, and I’m really confident that the STOA workshop will be an important part of that.”
On 30 September 2025 at 14:00 CET, the Panel for the Future of Science and Technology (STOA) will host a workshop in the European Parliament called ‘Long Covid: Current Realities, Future Directions’. It will be an occasion to have an informed discussion on how to develop effective and long-term strategies for addressing Long Covid across Europe. The event will be web streamed. The link will be published on the event page.
“Events like this are crucial in showing that it’s in everyone’s interest, including governments’, to recognise the problem, take it seriously, and allocate appropriate funding,” concluded Mr Medinger.
Related content:
• Interview with Frederico Guanais on Long Covid: ‘awareness and understanding are essential’
• Interview with Gez Medinger: ‘We should discuss why Long Covid is such a significant issue – for healthcare but also for the economy’