Converging neurobiological and immune pathways in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and post-infectious fatigue syndromes (PIFS)
Patients with myalgic encephalomyelitis (ME) and/or chronic fatigue syndrome (CFS), or ME/CFS, have similar symptoms to patients with post-infectious fatigue syndromes (PIFS). Since it is unknown how these diseases originate, a proper diagnosis and treatment is still lacking for both ME/CFS and PIVS. This research aims to change this by joining the forces of patients, doctors and researchers.
Goal
Because ME/CFS and PIFS are similar, this project combines research into the pathophysiology of both diseases. Among other things, this project aims to map the similarity of symptoms, and whether these can be linked to changes in (neuro)inflammatory, immunological, metabolic, and neuroendocrine profiles. The project also investigates whether the development of the disease can be predicted. With this knowledge, the researchers aim to propose new diagnostic and therapeutic options.
Approach
Over 40,000 people in the Netherlands have been diagnosed with ME/CFS. Research shows changes in (neuro)inflammatory, immunological, metabolic, and neuroendocrine profiles in both ME/CFS and PIFS patients. This project will investigate the pathophysiology and development of these profiles over 4 years by using data from the Netherlands ME/CFS Cohort and Biobank (NMCB) and existing prospective PIFS cohorts. The aim is to verify findings, map biomarkers and biomarker profiles in order to select better diagnostic and therapeutic options.
Part of the NMCB consortium
This research project is associated with the Netherlands ME/CFS Cohort and Biobank (NMCB) consortium. More information on the consortium and the other NMCB research projects can be found on the NMCB consortium’s page.
Collaboration partners
The research project is part of the Netherlands ME/CFS Cohort and Biobank Consortium with project leader Jos A. Bosch, PhD. The NMCB consortium consists of researchers from Amsterdam UMC, RIVM, GGD Amsterdam and Radboudumc. They also collaborate with researchers from The Australian National University, University of New South Wales, Hanover University, University of Colorado and Akershus University Hospital.
(Expected) Results
This study is expected to result in epidemiological and biological data on the origin of PIVS and ME/CFS. By involving PIVS, it may be possible to better investigate the origins of ME/CFS and make it clear to researchers whether the two diseases can be studied together. By joining forces, we can reach better diagnostic and therapeutic options and do so faster.
Other
The role of patients is very important in this project. The researchers have regular and close contact with patients (representatives), along with doctors, other research groups and partners.
All data will enter the NMCB, be published in scientific journals, presented at symposia and conferences. Patients, doctors and the wider public will also be informed about the new findings. This will lead to better understanding, recognition and less stigmatisation for patients.
As this research is part of the NMCB consortium, the general guidelines on intellectual property and FAIR (Findable, Accessible, lnteroperable, Reusable) data management are followed. The data will be anonymised. The data stewards create a data management plan and all projects are reviewed by the medical ethics committee and will follow the General Data Protection Regulation (GDPR).