Here are just a few of the common research terms you may come across.
The National Institute for Health and Clinical Excellence (NICE) guideline on CFS/M.E. contains a glossary of the terms it uses on p 12.
A number of online glossaries can be found (right) under Related links.
Commonly used terms
Aetiology and pathogenesis
Aetiology is the cause of disease. Pathogenesis is the mechanism by which disease is produced.
This is the study of disease in defined populations.
Evidence based medicine
'The conscientious, explicit and judicious use of current best evidence in making decisions about the care of the individual patient. It means integrating individual clinical expertise with the best available external clinical evidence from systematic research.' Sackett, DL et al. (1996)
The Medical Research Council (MRC) issues Highlight Notices when it wants to stimulate research volume and capacity in scientific areas that it considers a priority. These areas do not, however, carry ring-fenced funding. Other current examples of areas of research the MRC has highlighted include Autism and Multiple Sclerosis.
A list of requirements that must be met for a patient to be included in a study, or that studies must meet to be included in a systematic review.
The natural or usual and expected course an illness runs.
These are tools or measurements used in a study to evaluate whether a treatment or intervention has had a positive or negative effect. These may include laboratory tests, tests of function, or symptom scoring systems. An example of the latter would be the Chalder Fatigue Scale.
Journals that carry out peer review have a system in place whereby submitted articles and papers are checked by other scientists (peers) to ensure they meet specific criteria. It is thought that peers are best placed to be able to identify each other's errors and flaws quickly and easily and this helps to ensure quality. The system is not foolproof but provides the best available check for quality and reliability.
The likely course and outcome of a person's disease.
Descriptive research carried out using systematic approaches, but not simply reducible to numerical forms analysable by statistical methods (although some aspects can be quantitated).
Randomised controlled trial (RCT)
Randomised controlled trials have at least two groups of participants and treatments are assigned to eligible patients at random. The randomisation process is usually done by a computer.
One group will receive the treatment being tested and another (the control group) will receive their usual treatment or the existing standard.
A placebo or inactive preparation that appears identical to the test preparation may be given; in this way both the patient and investigator can be unaware at the time ('double-blind') which the patient was receiving. This reduces potential for bias in the collection or analysis of results.
Research is the systematic acquisition of knowledge towards a better understanding of an issue. Based on existing knowledge, a hypothesis (theory) is developed. Research is then planned to collect data systematically so as to test the hypothesis. Usually the research is designed to 'falsify' or disprove the hypothesis; if it doesn't, the hypothesis is more likely to be true, but it is not proven.
Research selection criteria
In order to ensure that only patients with M.E./CFS are included in research trials and to exclude individuals with conditions that can be confused with M.E./CFS, various selection criteria have been defined.
A definition of Chronic Fatigue Syndrome, developed by the American Centers for Disease Control (CDC) and revised by Fukuda, Straus, Hicke, Sharpe et al (the ‘Fukuda’ definition) has become the standard criteria for research.
Defining M.E. for diagnosis or research has been the subject of much debate. A recent summary of the different criteria was published in the Scottish Public Health Network's Health Care Needs Assessment of services for people living with M.E.-CFS in Scotland (see p 34 and table 5.1 on p 40).
A systematic review will bring together, appraise and summarise all relevant studies on a given topic. The aim is to provide good quality evidence to guide decision-making. For further information on systematic reviews see the York Review and Cochrane.
It is likely that various different subgroups exist within the umbrella term CFS/M.E. Subdivision should be based on explicit criteria that have been shown to distinguish separate subpopulations. Subdivision could be based on different sorts of categories, on different criteria, for different purposes (e.g. triggering event, response to treatment, severity).
Drugs and other therapies or strategies that can have a beneficial effect on the health of someone who has M.E.