Research into long-term symptoms following infections
Have you been left with long-lasting and debilitating symptoms following Lyme disease, Q fever, sepsis or COVID-19? Find out more about research opportunities and how you can contribute.
Persistent and debilitating symptoms following infections are known as post-acute infection syndromes (PAIS). The symptoms of different PAIS often overlap considerably and are similar to those of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
There is an urgent need for more knowledge and a better understanding of these conditions. That is why we are investigating the biomedical similarities and differences between the various PAIS and ME/CFS.
The PAIS&ME studies are part of the NMCB consortium. Through the NMCB, we are actively seeking people with PAIS to take part in research. If you have persistent and debilitating symptoms following Lyme disease, Q fever, sepsis or COVID-19, please register via our Take part in research page.
Have you recovered from one of these infections? Your contribution may be just as important!
Who is eligible to take part in the NMCB?
People who have had Lyme disease, Q fever, COVID-19 or sepsis and who:
- Have been left with persistent and debilitating symptoms;
- Have recovered well from the infection (except for COVID-19);
- Are between 18 and 65 years old;
- Have a BMI below 40.
As part of the PAIS&ME studies, we investigate what happens in the body when people experience long-term symptoms following infections. This includes blood tests, some of which may be carried out at home.
By taking part in the NMCB and the PAIS&ME studies, you will contribute to building the knowledge needed to recognise and understand persistent symptoms following infections. This knowledge may help improve diagnosis and treatment. We also hope that a better understanding of PAIS and ME/CFS will help strengthen the collective voice of people affected by these conditions when engaging with policymakers.
What are the PAIS&ME studies investigating?
We do not yet fully understand why some people develop chronic and debilitating symptoms following infections, while others recover normally. The PAIS&ME studies therefore investigate what exactly happens in the body.
We pay particular attention to the immune system, inflammation, metabolism, the nervous system and hormonal regulatory systems. We compare different PAIS and ME/CFS with both positive control groups (people with multiple sclerosis, MS) and negative control groups (people who have recovered and healthy people).
All these groups are carefully characterised within the NMCB. This requires a rigorous screening process to ensure that all inclusion criteria are met. As a result, you may register your interest but ultimately not be eligible to participate. We apologise for any disappointment this may cause.
After carefully characterising the groups based on symptoms and general disease-related information, we also investigate their biomedical profiles. This involves:
- Targeted proteomics of blood plasma
- Analysing 5,400 proteins that provide information about inflammation, the immune system, metabolism, the nervous system, recovery processes, hormonal processes and more.
- Untargeted metabolomics of blood plasma
- Investigating the state of metabolism.
- RNA sequencing of immune cells
- Examining how immune cells are activated.
- DNA methylation analysis of immune cells
- Investigating how DNA is regulated and whether genes can be read.
Why are these groups compared with one another?
Persistent symptoms following infections often resemble one another and share many similarities with symptoms of ME/CFS, which also frequently, though not always, develops following an infection. However, this does not automatically mean that the same processes are occurring in the bodies of everyone affected.
The PAIS&ME studies therefore compare different participant groups: people with PAIS, ME/CFS or MS, as well as recovered and healthy control groups. By comparing these groups, researchers can better identify what they have in common and how they differ. This also provides a clearer understanding of specific symptom clusters, such as post-exertional malaise (PEM), cognitive difficulties, and problems regulating heart rate and blood pressure. These symptoms are not unique to any one PAIS or to ME/CFS. In this way, researchers can identify biomedical patterns that might not be visible when studying just one group.
What does this mean for the future?
The PAIS&ME studies will not directly lead to a diagnosis or treatment. You will therefore not automatically receive individual test results or personal medical advice. However, if we identify anything that may be important for your health, we will of course discuss it with you.
The aim of this research is to build knowledge that will help us better recognise and understand persistent symptoms following infections. This knowledge may also help guide future research into diagnosis and treatment.
Progress will be gradual. First, we need to gain a better understanding of the processes in the body that may play a role. Subsequent research can then explore what these findings may mean for patients and healthcare professionals.
The results of the PAIS&ME studies will provide important insights for scientists, healthcare professionals and policymakers working in the fields of PAIS and ME/CFS.