I recently followed an online webinar about patient involvement in the Dutch ME/CFS program. It looks like the idea is to involve patients in as many aspects of the research project as possible, which is a great initiative. If I recall correctly, ME/CFS patients were already involved in ensuring quality of research in Norway. Patients can also have an influence on research through charities that provide research funding. With this in mind, I thought it might be useful to write down a few general principles that might help to improve the quality of ME/CFS research without overburdening scientists too much. Here’s what I got thus far, hope others can complement. 1) Pre-registration: publish a protocol Every scientific study involving ME/CFS participants should be well-thought in advance and publish a protocol that specifies hypotheses, experimental design, power calculation, outcome measures, etc. This prevents p-hacking and cherry-picking of results and makes a research project more transparent towards patients and other researchers. Without a pre-specific protocol, it is impossible to know how many analyses were conducted or whether highlighted findings were selected post-hoc. The Open Science Framework (OSF) makes it easy to pre-register a study protocol. 2) Involve ME/CFS patients in the design, and implementation of your study ME/CFS researchers should involve patients in the design and implementation of their research. Patients can help point out practical difficulties in trial design such as problems with transportation or ambiguity in questionnaires. In addition, patients have a lived experience that offers a unique perspective on ME/CFS. In the past, research has resulted in dismissive, patronizing, and simplistic theories about ME/CFS that likely would not have taken this form if patients were actively involved in research. Lastly, engaging patients in research also helps to make sure that results are well-disseminated in the ME/CFS patient community. 3) Use recent ME/CFS diagnostic criteria correctly It is recommended that research uses recent diagnostic criteria for ME/CFS such as the Canadian Consensus Criteria (CCC), the International Consensus Criteria (ICC), or the National Academy of Medicine case definition. When older definitions such as the 1994 Fukuda criteria are used for comparability, it is advised to measure symptoms and characteristics (such as orthostatic intolerance) that allow the percentage of patients meeting recent criteria, to be calculated. When some aspects of ME/CFS case definitions are not fulfilled, it is recommended to clarify this in the publication title and description. For example, studies that did not include a clinical examination of patients are usually referred to as studying ME/CFS-like symptoms rather than ME/CFS. 4) Use the Common Data Elements for ME/CFS It is advised that researchers use the Common Data Elements for ME/CFS research. These recommendations provide an overview of the most adequate tools and questionnaires to measure symptoms and quality of life in patients with ME/CFS. They help to make sure that research is harmonized and comparable. 5) Follow relevant reporting guidelines ME/CFS research should be reported clearly and transparently. ME/CFS publications should follow relevant reporting guidelines to make sure studies can be replicated by other researchers and their findings are easily understood by doctors and patients. The Equator network provides a useful overview of reporting guidelines for many different study types. 6) Focus on effect size estimates and their uncertainty rather than statistical significance The findings of ME/CFS research are ideally reported in terms of effect size and their uncertainty, rather than statistical significance. The latter is often an arbitrary threshold and findings that are statistically significant can be so small that they are clinically irrelevant. A focus on effect sizes and their precision also help the interpretation of replication studies. 7) Make your findings open-access The findings of ME/CFS research should be available to patients, doctors, policymakers, and other researchers. If results are not published in an open-access journal or on a pre-print server, it is recommended that authors publish their submitted version on a personal website or academic server such as ResearchGate. Most scientific publishers allow the Author’s Original Manuscript (AOM), the version of a paper before submission and peer review, to be freely distributed. 8) Publish your data, not just the results Researchers should make the raw data and statistical analyses publicly available in a way that ensures the anonymity and privacy of study participants. Publishing full datasets enables others to check publications for errors or conduct additional analyses. It also ensures a lasting impact of a study because the individual patient data can be used in future meta-analyses. Scientific studies are often expensive and require big efforts from ill patients. Withholding valuable information from these studies blocks scientific progress and should be viewed as lamentable, regardless of current norms on sharing data in the scientific community.