Is chronic fatigue syndrome just fatigue? How to recognise it
The National Medical Association's team of doctors and anti-fraud experts answers the most important health questions
Key points
12 May is World ME/CFS Day, the international acronym for myalgic encephalomyelitis/chronic fatigue syndrome. The name can be misleading: 'chronic fatigue' might evoke persistent tiredness, but this disease is something radically different and much more disabling, and can significantly reduce the quality of life of sufferers. In the World Health Organisation's International Classification of Diseases (ICD-11), it is included in the chapter dedicated to diseases of the nervous system, although its nosological classification is still a matter of debate in the scientific community. For years it was little considered, often dismissed as a problem 'in the head' of patients, but scientific advances are finally changing this scenario.
What exactly is chronic fatigue syndrome?
ME/CFS is a complex chronic disease involving several systems of the body: the nervous system, the immune system and the energy metabolism of cells. It can affect people of all ages, but is most common between the ages of 30 and 50 and seems to affect women more frequently than men. It often appears suddenly, after a viral infection, although in some cases the onset is gradual. Despite being a condition recognised by the international scientific community, it has long been underestimated in the past, with many patients recounting years of misdiagnosis or delay, and of not being believed. The minimum duration required to make a diagnosis is six months of persistent symptoms, which must be carefully evaluated by the physician. Although some national guidelines, such as the British National Institute for Health and Care Excellence (NICE) guidelines, propose precise diagnostic criteria, there is still no unanimous international consensus on how to definitively diagnose this syndrome.
But isn't rest enough to feel better?
No, and this is one of the most dangerous misunderstandings about this disease. The cardinal symptom of ME/CFS - the one that distinguishes it from any other form of fatigue - is called 'post-exertional malaise' (PEM). It is a marked worsening of all symptoms that appears after even very mild physical or mental exertion, such as going for a walk or a video call, and that can last for hours, days or even weeks. This means that doing 'more activity' does not help to feel better: on the contrary, it can significantly worsen the patient's condition. In addition to PEM, people with ME/CFS typically report: intense fatigue that is not relieved by rest (also called 'fatigue', to distinguish it from the more common and normal fatigue); difficulty concentrating and remembering, often described as 'brain fog'; non-restorative sleep (one wakes up as tired as before sleeping, as if the 'battery' never recharges); muscle and joint pain; symptoms that worsen by standing for long periods of time, such as dizziness or tachycardia (orthostatic intolerance).
How is it diagnosed? Is there a cure?
There is no blood test or MRI to diagnose ME/CFS: the diagnosis is clinical, i.e. it is based on the doctor's careful and systematic assessment of the symptoms, after ruling out other possible causes. The most up-to-date international guidelines, published in 2021 by the UK's NICE, indicate precise diagnostic criteria and recommend that the diagnosis be made within a reasonable timeframe, to avoid delays in treatment. Regarding therapy, gradual exercise therapy had long been recommended. However, the NICE guidelines of 2021 have changed this stance sharply: gradual exercise should not be offered to people with ME/CFS because it can worsen symptoms, and the same caution applies to some forms of psychotherapy that have been used as treatment in the past. The approach considered safest today is called pacing, i.e. the conscious management of available energy, learning to stay within one's limits to avoid post-exertional discomfort. There are no drugs specifically approved for this disease. Care must be multidisciplinary, with the support of general practitioners and specialists capable of managing individual symptoms.
Is it true that the ME/CFS is connected to the long Covid?
Yes, and it is one of the aspects on which research is focusing most intensively. Many people who have had Covid-19, after passing through the acute phase of the infection, continue to present with persistent symptoms for weeks or months: this condition is known as 'long Covid' (we have discussed it in numerous articles). Some of these patients develop a clinical picture very similar to, and partly overlapping with, that of ME/CFS, including post-stress malaise as a central symptom. Recent studies published in international scientific journals estimate that a significant proportion of people with long Covid meet the diagnostic criteria for ME/CFS. This has led to a renewed scientific interest in the disease, with increased research funding globally. If you experience intense fatigue, cognitive difficulties and malaise after an infection that does not improve after a few weeks, it is important to start talking to your general practitioner, who will be able to assess the overall clinical picture and direct you towards appropriate care.
