Many people with ME/CFS wonder what is happening in their bodies. Their loved ones often also want to better understand what this illness entails. In addition, there are healthcare professionals, researchers, and others who are interested in learning more about ME/CFS. Reliable information is essential in this regard, and it often comes from scientific research. But how does scientific research actually work? What can you expect from it—and what not?
In this blog series, we—the communication and implementation working group of the ZonMw ME/CFS research program—take you step by step into the world of science. The series is intended for people with ME/CFS, their loved ones, and anyone interested in ME/CFS. We explain what scientific research is, how it works, and the role it plays in understanding this disease.
We begin with a basic question: Why do we conduct scientific research? We then look at what scientific research involves and how researchers carry out their work. We also explain why research is particularly important for a disease that is not yet fully understood.
The series also explores the decisions behind scientific research. Who decides which topics are studied? How is research funding allocated? Why does research often take a long time? And why can some people participate in a study while others cannot? We also discuss research consortia and the use of diagnostic criteria in scientific studies. People with ME/CFS, their loved ones, and others interested in the field regularly encounter news reports and articles about the disease. This series can help you understand research findings and assess what study results mean, how reliable they are, and whether they may be relevant to you.
With this blog series, we hope to increase understanding of scientific research into ME/CFS. Our aim is to help readers approach new information with greater knowledge and confidence. We hope you enjoy the series.
Blog 1: Why do we need scientific research?
In this introductory blog, we take you into the world of science. We start with the basics: why do we conduct scientific research in the first place?
Blog 2. What is scientific research, and are there different types of studies?
What exactly is scientific research, and why is it necessary? And what is important to know about the ME/CFS research landscape?
Blog 3. Diagnostic criteria: what are they, and why are they important?
What are diagnostic criteria? Why are there different sets of criteria, and why does it matter which ones are used in research?
Blog 4. How does ME/CFS research work?
When you are living with ME/CFS and looking for information about the disease, you will often come across references to scientific research. But how does scientific research into ME/CFS actually work?
Blog 5. How Is Scientific Research Organised?
Why do researchers studying ME/CFS sometimes also conduct research into other diseases? To understand this, it helps to know how scientific research is organised.
Blog 6. Two Dutch consortia for ME/CVS research.
Who conducts research into ME/CFS, why do researchers collaborate, and what does this collaboration mean for people with ME/CFS and their loved ones?
Blog 7. What can influence research, and how do researchers take this into account?
Which factors can influence the results of ME/CFS research, and what do researchers do to make their studies as reliable as possible?
These blogs were written by Inge van Putten and Sebastiaan Stam and were developed through a collaboration between the following organisations participating in the ZonMw ME/CFS Research Programme:
- ZonMw
- NMCB-consortium
- ME/cvs Vereniging
- MECVS Nederland
- MECFS Lines