The MeCfs Lines consortium

Total grant inclusing sub projects: around 4,4 million euros

Description of MeCfs Lines

MeCfs Lines is the smaller consortium of the two, at least when measured in terms of funding or the number of parties involved. However, when you look at the amount of data being analyzed, it is actually the largest. The consortium has a very clear opinion on research into ME/CFS. Six reasons are given as to why biomedical research into ME/CFS has yielded so little results so far, along with the approach of MeCfs Lines to solve all these problems. Here is the summary in a table.

The consortium uses the existing Lifelines cohort, which has been running since 2007¹ . This is a so-called population cohort: a cross-section of the population in Northern Netherlands, being followed for years. As many as 167,000 people participate in this study. According to previous measurements, around 2500 participants meet the ME/CFS criteria, but that data has not yet been further investigated. There is a wealth of data waiting to be explored here. Information from about 400 of them is also available from the period before they developed ME/CFS. Lifelines is the only cohort in the world that has this type of data, offering a unique opportunity to investigate the cause of ME/CFS.

MeCfs Lines is building a separate cohort with a biobank to conduct further research on these 2500 participants. 800 patients will be analyzed in more depth in the field of systems biology. This includes “big data” research on proteins, products from metabolism in cells and from the immune system, and on the microbiome present in the gastrointestinal tract. The research is being carried out in sub-projects. A separate project focuses on the genetics of ME/CFS, for which an international collaboration is being established.

Comparison of patient data with the other consortium will be possible. The MeCfs Lines biobank will be harmonized with the NMCB biobank, keeping a close eye on the UK ME/CFS Biobank. Both consortia use the comprehensive DePaul questionnaire to compare and classify patients based on the four well known criteria sets Fukuda/CDC, IOM, CCC, and ICC. NMCB and MeCfs Lines will also collaborate as much as possible at the project level.

The researchers in MeCfs Lines

The setup of MeCfs Lines distinguishes itself from that of the well-known ME/CFS programs in other countries. Therefore, experience senior scientists from outside the field are involved. For example, professor Joyce van Meurs (population genetics, Erasmus UMC), and professor Alexandra Zhernakova (microbiome and its relationship with the immune system, UMC Groningen), both of whom have published in Nature in their respective fields. Thomas Vogl (systems immunology, Medical University of Vienna) has previously conducted research on ME/CFS and brings in new analytical techniques. See the summary for more names.

The consortium is led by Professor Judith Rosmalen, who is a professor of psychosomatics at UMC Groningen and is an immunologist, epidemiologist, and psychologist. In recent years, she has repeatedly called on the government to invest more in biomedical research into long COVID. Her publication on long COVID in The Lancet is known as one of the best studies in this field² . She has also been a strong advocate for more biomedical research into ME/CFS for many years. She was a member of the Health Council Committee that recognized ME/CFS as a multisystem disease in 2018 and recommended a biomedical research program. She is highly regarded in the scientific community and can make a significant contribution to the recognition of ME/CFS in the medical sector in the Netherlands.

Our opinion on MeCfs Lines

We are very excited about the ideas of MeCfs Lines, and the new scientists they bring to the ME/CFS field. This could be a game changer. As a patient organization, we have been involved in this consortium and its sub-projects from the beginning, and will be represented in the steering group. We are in favor of as much collaboration as possible between the two consortia because we believe in that case the research program will yield the most results. We have full confidence in the ten project leaders and the two consortium leaders that they will do so.

Sub-projects within the MeCfs Lines consortium

  • Sasha Zhernakova – Antibody repertoires against microbiota as biomarkers for ME/CFS
  • Aleksandr Kurilshchikov – A role of the microbiome in the pathogenesis of ME/CFS: a population study
  • Cindy Boer – ME/CFS & genetics: investigating the biological cause
  • Inge Zijdewind – “Post-exertional malaise”, a starting point to study and understand ME/CFS

[1] More information available at https://www.lifelines.nl/
[2] https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(22)01214-4/fulltext