Over 400,000 people in England suffer from Myalgic Encephalomyelitis (ME), or Chronic Fatigue Syndrome (CFS), according to a University of Edinburgh study. This figure is two-thirds higher than previously estimated. At the same time, these figures are being compounded by an increasing number of people being diagnosed with Long Covid, which has similar symptoms to ME.
Words like ‘invisible’ have been used to describe ME and Long Covid, which the UK ME Association has called a ‘hidden crisis’. The society has announced its commitment to providing expert help to people living with ME and CFS and has added Long Covid, now known as Post-Covid Syndrome, to its portfolio. This is because of the similarities between Long Covid and ME/CFS/
What Is ME?
ME/CFS is a complex, chronic, and often disabling condition which affects multiple systems in the body. It is characterized by persistent, profound fatigue that is not relieved by rest and worsens with physical or mental exertion, cognitive dysfunction, sometimes called ‘brain fog’, sleep disturbances, muscle or joint pain, muscle or joint pain, sensitivity to light, noise or smells, and flu-like symptoms. Those living with ME might also experience orthostatic intolerance, meaning symptoms worsen when standing or sitting upright.
There’s a lot of overlap between Long Covid and ME/CFS, which is why researchers and doctors are paying close attention to their similarities. Long Covid refers to ongoing symptoms that persist for weeks or months after the initial Covid-19 infection, often lasting more than 12 weeks, and sometimes appearing even after a mild case.
According to medical sources, Long Covid symptoms can include persistent fatigue (severe exhaustion that doesn’t improve with rest), post-exertional malaise (PEM), shortness of breath, chest pain or palpitations, cognitive issues (“brain fog”), sleep disturbances, muscle aches or joint pain, loss of smell or taste, headaches, digestive problems, anxiety or depression, dizziness and difficulty standing (autonomic dysfunction), tingling or numbness in limbs, and menstrual cycle changes.
Why has CFS Been Underplayed in the Past?
For decades ME and CFS research has been underfunded and the condition has been stigmatised. One of the reasons for this is that those living with the condition lack visible signs of having anything wrong with them. They often look ‘normal’, making it hard for others to see or validate their suffering.
Symptoms also fluctuate. Patients can have ‘good days’ and ‘bad days.’ This variability can lead people (even doctors) to underestimate the condition’s severity.
Furthermore, historically, ME/CFS was wrongly believed to be psychological or stress-related. Though science has moved on, some outdated views persist among healthcare professionals.
Lack of diagnostic tests has further resulted in unclear ME/CFS diagnosis. There is no single test for ME/CFS. Diagnosis relies on clinical evaluation and ruling out other illnesses, which can lead to misdiagnosis or delays.
Long Covid Prevalence Revives Interest in ME
Current news reports say that in spite of the higher-than-anticipated prevalence of ME, many of those living with the condition and with Long Covid feel invisible, as their symptoms and daily struggles living with the condition are often not considered. This is because on the outside they appear to be fine.
However, research into Long Covid is reviving an interest in ME/CFS because of the overlap in symptoms. ME and CFS may begin after a viral infection, just like Long Covid. Both conditions may involve lingering inflammation or an overactive immune response. They also both involve dysfunction of systems that regulate heart rate, blood pressure, etc., and some research suggests impaired energy production at the cellular level in both groups.
It is expected that treatments developed or explored for one condition may help the other.
The recognition of these overlapping conditions is also increasing awareness and validation for patients who were previously told “it’s all in your head.”