How does ‘Severe’ Myalgic Encephalomyelitis differ from less severe forms?

Those with severe Myalgic Encephalomyelitis are either bedbound and/or virtually or completely housebound. They require unique care due to the tendency for the illness to be exacerbated by everyday stimuli such as light, noise and movement. They are often too ill to use a wheelchair, or can only do so to a very limited degree. Many need to spend their time lying flat in silence and darkness to avoid deterioration.  Some are tube-fed, incontinent, unable to communicate, allergic to medications, and unable to move.  

Those with very severe Myalgic Encephalomyelitis experience profound levels of suffering and extreme symptoms, which can be life-threatening. Life may be reduced to basic survival, struggling moment by moment to breathe, eat, and drink, while enduring extreme pain.

Unfortunately, Myalgic Encephalomyelitis has been misrepresented as a mental health condition and the term chronic fatigue syndrome has been promoted by a psychiatrically oriented lobby that uses a much wider, looser, now discredited definition, with a primary focus on fatigue. Despite fatigue not being mentioned as a symptom of the original illness for which Ramsay formally gained recognition by the WHO in 1969.

This has led to misunderstanding, misrepresentation and mistreatment of those who have genuine Myalgic Encephalomyelitis and the promotion of an inappropriate psychosocial approach which relies on the presumption that ME is perpetuated by wrong illness beliefs and deconditioning, offering ‘treatment’ protocols that focus primarily on changing thought and gradually increasing activity. We are pleased to report that the 2021 guideline from NICE ‘ME/CFS: diagnosis and management’ reflects a sea change, making it clear that this type of approach is not appropriate. See our page on NG206 here