Blog 6: Two Dutch Consortia for ME/CFS Research

When you are living with ME/CFS and looking for information about the disease, you will often come across references to scientific research. In an earlier blog, we explained how scientific research works. You may have been left with some new questions.

In this blog, we take things a step further. We explain who conducts research into ME/CFS, why researchers collaborate, and what this collaboration means for people with ME/CFS and their loved ones.

In the Netherlands, researchers pool their knowledge and resources in the field of ME/CFS through two major collaborative initiatives, known as consortia. These are the MECFS Lines consortium and the Netherlands ME/CFS Cohort and Biobank Consortium (NMCB). Together, they investigate the course of ME/CFS, from the first symptoms to the most severe stages of the disease. Although both consortia share the same goal – to expand knowledge about ME/CFS – they approach it from different perspectives.

MECFS Lines: Tracking How the Disease Develops

MECFS Lines is the consortium led by the University Medical Centre Groningen (UMCG). It builds on Lifelines, a large population-based study in the northern Netherlands. A study in which a large group of people is followed over an extended period is known as a cohort study. Lifelines has been following more than 167,000 people for over 20 years.

Data have been collected from these participants at several points in time through questionnaires, medical examinations and the collection of biological samples, such as blood and urine. Researchers can use these data to study genetics (variations in DNA), the immune system (how our bodies respond to, for example, bacteria and viruses), gut bacteria and metabolism, among other things. This helps them gain a better understanding of various diseases and conditions. ME/CFS is one of the diseases being investigated using Lifelines data. Researchers hope to identify patterns that will provide further insight into how the disease develops and progresses.

For this research, Lifelines participants were asked to complete the validated DePaul Symptom Questionnaire (DSQ-2) A validated questionnaire is one that has been shown to reliably distinguish between different groups of people. The DSQ-2 is a short health questionnaire that researchers use to measure the severity and frequency of symptoms, including post-exertional malaise (PEM). Based on the responses, researchers can determine which international diagnostic criteria participants meet, such as the CDC, CCC and ICC criteria. We discussed these diagnostic criteria in an earlier blog (Blog 3). Approximately 40,000 Lifelines participants have completed this questionnaire. This allows researchers to determine which diagnostic criteria the participants meet. They can then compare different groups and describe their research findings carefully.

One particularly valuable aspect of Lifelines is that some participants developed ME/CFS while taking part in the cohort study. Data and biological samples are also available from these individuals from before they became ill. This enables researchers to compare data and biological samples collected before and after the onset of the disease, making this research both unique and important.

The NMCB Consortium: Research Involving Patients

While MECFS Lines makes use of an existing population-based cohort, the NMCB consortium focuses on people who have already been diagnosed with ME/CFS. The consortium also pays particular attention to patients who are severely ill.

The consortium is establishing a national biobank – a collection of biological materials, such as blood, together with associated health data for scientific research – and a cohort of people with ME/CFS. For comparison, data are also collected from people with post-COVID and people experiencing long-term symptoms following conditions such as Lyme disease, Q fever and sepsis. To participate, individuals must have received an ME/CFS diagnosis from a physician. At the start of the study, participants complete the DSQ-2 and additional questionnaires. Researchers use the responses to determine whether someone is eligible to take part. They then verify the diagnosis with the participant’s GP and assess whether the symptoms meet the relevant diagnostic criteria (CDC 1994, CCC, ICC or IOM). In addition, participants must not have other severe medical conditions or be taking medication that suppresses the immune system.

For those who are eligible and wish to participate, blood samples are collected for a range of tests. Urine, stool and saliva samples are also collected. Participants undergo several physical tests and complete additional questionnaires online at home.

The NMCB consortium includes subprojects that collect data and biological samples from people with ME/CFS. For example, brain scans are collected from a large group of patients, and one subproject stores biological samples from deceased patients. This enables researchers to investigate ME/CFS from different biological perspectives. In addition to people with ME/CFS, the NMCB consortium also includes clinical control groups in its research. These are people with multiple sclerosis (MS), Q fever, post-COVID or Lyme disease.

The NMCB consortium also includes severely ill patients, many of whom are housebound. Because their capacity to participate is more limited, the research approach is adapted to what is feasible for them. Research nurses visit participants at home to collect blood samples and carry out measurements. This allows researchers to study this group as well, even though severely ill patients are often underrepresented in scientific research. It provides valuable knowledge about the most severe forms of ME/CFS.

Samen sterker

The two consortia complement each other by using different research methods. Researchers in the NMCB consortium primarily take a hypothesis-driven approach: they start with an idea formulated in advance and test it through research. MECFS Lines takes a more exploratory approach. Researchers first collect a large amount of data and then investigate which patterns and associations emerge.

MECFS Lines can therefore provide new clues about how ME/CFS develops and progresses. The NMCB consortium makes it possible to investigate these clues in a more targeted way and gain a better understanding of the processes involved.

By complementing each other in this way, the two approaches help build a more complete picture of ME/CFS. This creates opportunities for new insights, as well as for carefully testing and further developing those insights.

What Does This Mean for You as a Patient?

By sharing knowledge and collaborating with researchers in the Netherlands and abroad, both consortia help accelerate the growth of knowledge about ME/CFS. Their collaboration also makes it easier to compare research findings and build a stronger evidence base.

For patients, this means that researchers are gradually gaining a better understanding of how the disease develops and progresses. This is an important step towards improved diagnosis and, potentially, better treatments in the future.