A significant number of individuals with ME/CFS, and those with long COVID, are all too familiar with the frustration of being misdiagnosed. Individuals may be initially diagnosed with conditions like anxiety or depression, instead of receiving a diagnosis of ME/CFS or long COVID. While other conditions can co-occur, misdiagnosing these diseases can result in missed opportunities for proper care, including crucial energy management strategies. Moreover, a delay in receiving the correct diagnosis can lead to worsening symptoms and disease severity.
However, misdiagnoses can also go the other way. A particularly disturbing example, reported in the Independent, is the case of Olivia Knowles, a 33-year-old woman who was initially misdiagnosed with long COVID, only to later find out she had acute myeloid leukaemia (AML) – a type of blood cancer.
In late 2023, Knowles began experiencing headaches and fatigue, symptoms which were attributed to long COVID by her private doctor. Her doctor suggested that it was “very likely long COVID” and that she should “expect to feel like this for some time.” When her condition worsened and she developed severe tooth pain, she had an emergency hospital visit and was diagnosed with AML just two days later. Her case highlights the risks of attributing serious, undiagnosed health conditions to long COVID, and more similarly ME/CFS, when they may signify something critical.
While the short delay in diagnosis – just two days between her initial private consultation and hospital visit – may not have significantly impacted the stage of the AML, the situation serves as a stark reminder of the dangers of misdiagnosis. Therefore, it should be used to encourage thorough exclusion of other conditions when long COVID or ME/CFS is suspected.
According to the NICE 2021 guideline for ME/CFS, doctors should rule out other diagnoses through comprehensive medical assessments and examinations, and tests like blood tests and urinalysis. This makes it less likely that conditions, such as cancer, are not overlooked, particularly as symptoms like fatigue, and general malaise overlap. Also, the hallmark feature of ME/CFS – post-exertional malaise (PEM) – needs to be better recognised by healthcare professionals.
Moreover, individuals with ME/CFS or long COVID are not immune from being diagnosed with other conditions. If symptoms change or worsen, they should not automatically be attributed to ME/CFS or long COVID but be thoroughly evaluated. It must further be noted that conditions like hypothyroidism, sleep apnoea, or iron deficiency can present with overlapping symptoms which makes it crucial to consider all possibilities and occurrence of new comorbidities.
Conclusion
Misdiagnosis is a significant risk that can lead to delayed treatments and poor outcomes for patients. The fact that ME/CFS and long COVID can overlap with other conditions makes accurate diagnosis important. It is vital that healthcare providers undergo proper training and follow appropriate guidelines to ensure patients receive appropriate management without delay.
