Regrettably, late, under- and non-diagnosis of ME/CFS are thought to be common. In fact, a recent study in the UK identified that:
“Many people with ME/CFS are experiencing a serious and potentially harmful delay in having their diagnosis confirmed. Many individuals are diagnosed within the first 2 years, but a considerable number are diagnosed after more than 10 years.”
This means that many people who experience symptoms of the disease may not yet have an ME/CFS diagnosis.
Therefore, a research team in Germany aimed to:
- Identify how many people ‘who were convinced they had ME/CFS’ but did not (yet) have a medical diagnosis, met the Canadian Consensus Criteria for the disease.
- Compare the two groups – those with and ME/CFS diagnosis and those without, in terms of symptoms experienced and length of disease.
What did the study do?
The study team recruited 749 adults who stated they had a medical diagnosis of ME/CFS, and 191 adults ‘who were convinced they had ME/CFS’ but did not (yet) have a diagnosis of the disease.
Participants were asked to complete the following “easy-to-understand” questionnaires:
- The Depaul Symptom Questionnaire-Short Form (DSQ-SF), which assesses symptoms and determines whether or not the respondent meets the Canadian Consensus Criteria for ME/CFS.
- The Depaul Symptom Questionnaire-PEM (DSQ-PEM); a questionnaire specifically measuring post exertional malaise – the cardinal symptom of ME/CFS.
What did the results show?
Based on the results of these questionnaires, 51.6% (98) of those who did not have an ME/CFS diagnosis met the CCC for the disease; 48.4% (93) did not.
Notably, the participants without an ME/CFS diagnosis who met the CCC had very similar symptoms to those who had already been diagnosed with the disease. The research team stated that:
“It can therefore be assumed that the vast majority of patients without a medical diagnosis of ME/CFS who meet the PEM/Fatigue criteria of the CCC were very likely to suffer from ME/CFS”
One key difference between those who reported a medical diagnosis and those who did not was the length of disease. For those who met the CCC but did not have a medical diagnosis, length of disease was noticeably shorter – the number of doctors consulted so far in connection with the disease and the number of hospital/rehabilitation stays were also significantly lower on average.
The research team concluded that the DSQ-SF may be a useful tool to help clinically active physicians – especially those with little experience in ME/CFS diagnostics, to easily corroborate their suspected diagnosis of ME/CFS.
Limitations of the research
The authors acknowledge several limitations of the study:
- People who have symptoms of ME/CFS but do not have a diagnosis are hard to reach in Germany.
- Sampling methods used aimed to overcome this, but the sample obtained may be systematically different from those who did not take part.
- Unable to determine how representative the sample is as there are no exact figures on the prevalence or incidence of ME/CFS in Germany.
- The severity of ME/CFS was not recorded.
- The validity of a stated medical diagnosis of ME/CFS could not be verified.
ME Research UK notes that this study did not provide information on population characteristics such as education level, employment or ethnicity. Consideration of these factors is essential in future research relating to ME/CFS as previous research has shown that that rates of underdiagnosis may be higher in underserved populations – such as those with low education and in minority ethnic groups. Systematic differences in rates of ME/CFS diagnosis may lead to health inequalities – avoidable and unfair differences in health outcomes between different groups of people. The impact of intersectionality –“a metaphor for understanding the ways that multiple forms of inequality or disadvantage sometimes compound themselves and create obstacles that often are not understood among conventional ways of thinking” should also be a central concept considered by ME/CFS researchers.
