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ME/CFS is a severe, chronic multisystem disease. For a long time now, ME/CFS patients have been fighting for the acknowledgement of the disease and more research into the underlying mechanisms and possible therapies. Many physicians are still inclined to consider ME/CFS as a psychological condition, which used to be the mainstream approach before it was found that ME/CFS is a multisystem disease.
NMCB acknowledges ME/CFS as a biomedical disease and aims to fill in the gap for more research into the mechanisms and finding a cure.
Source: Health Council 2018, no. 2018/07
ME/CFS patients experience constant and intense exhaustion, as well as a worsening of symptoms after even minimal cognitive, physical, emotional or social activity – something known as “post-exertional malaise” (PEM).
In addition, many – especially the severely ill – experience Orthostatic Intolerance and/or Postural Orthostatic Tachycardia Syndrome (POTS). These conditions lead to symptoms such as a rapid increase in heart rate upon standing, diziness or fainting. As a result, patients may be partially or entirely confined to bed, which significantly impacts their daily lives.
ME/CFS has a profound impact on patients and society. Despite that, much remains unknown about the causes and possible treatments. Therefore, rigorous and systematic research into this is of great importance.
As described in the NICE guidelines (2021), the severity of ME/CFS can be divided into 4 categories. Individual symptoms may however vary in severity. The definitions below provide a guide to the impact of the symptoms on everyday functioning.
People with mild ME/CFS care for themselves and do some light domestic tasks (sometimes needing support) but may have difficulties with mobility. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often have reduced hours, take days off and use the weekend to cope with the rest of the week.
People with moderate ME/CFS have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work or education, and need rest periods, often resting in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.
People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound.
People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.
Source: NICE guidelines (2021)
