Regrettably, many people with ME/CFS experience a psychosomatic and psychiatric misdiagnosis – where symptoms of a physical disease are erroneously attributed to mental health and lifestyle.
Interestingly, a paper published in the journal “Rheumatology” has investigated the impact of psychosomatic and psychiatric misdiagnoses a the well-being of people with systemic autoimmune rheumatic diseases (SARD) – many of which, such as Sjögren’s syndrome and Lupus, have symptoms which overlap with ME/CFS.
Results showed that in more than 80% of people with SARD, a psychiatric or psychosomatic misdiagnosis had negatively impacted their self-worth.
Additionally, compared to those without psychiatric or psychosomatic misdiagnosis, those with a misdiagnosis also had significantly lower mental wellbeing, and higher levels of depression and anxiety – they also had lower levels of satisfaction with every aspect of medical care.
Having a psychiatric or psychosomatic misdiagnosis was linked with a higher chance of under-reporting symptoms, and of health care avoidance – often resulting from “distrust and fear that symptoms would be disbelieved or misattributed again”.
These findings echo those from a study by Dr Dana Brimmer and colleagues, which found that participants with ME/CFS expressed the need for “understanding of what it is like to seek a diagnosis and how ‘grueling’ it is to see multiple health care providers just to find one who believes and listens to your story.”
Findings from the study in people with SARD – and those from the research by Dr Brimmer’s team in people with ME/CFS, highlight the need for methods of accurate diagnosis – such as a validated disease biomarker, and in the absence of this, better education for health professionals on recognition of complex chronic diseases – and how they may present differently in different groups of people; such as different ethnic groups, and in men and women.
The results also underline the importance of research studies which aim to identify biomarkers for ME/CFS – like ME Research UK funded work currently being carried out by Dr Bo Bertilson in Sweden, which is searching for ME/CFS biomarkers in blood and cerebrospinal fluid.
