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, the name ME has been misrepresented as a mental health condition and the term CFS 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 1968.

The use of the conglomerate term CFS/ME or ME/CFS confuses and also misrepresents the illness, Myalgic Encephalomyelitis. This has led to misunderstanding, misrepresentation and mistreatment of those who have genuine Myalgic Encephalomyelitis and the promotion of an inappropriate psychosocial approach to ME 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 with the help of trained therapists.

For people with Severe ME, Graded Exercise and Cognitive Behaviour Therapy (CBT) are not recommended, though Graded Activity management, is unfortunately recommended by NICE.

However, the NICE guidelines are currently in the process of being rewritten, with a greater input by patient representative’s. GET and CBT have not been withdrawn from recommendation from the guidance, despite the 25% ME group and others requesting to do so in the interest of patients. Note that the FINE trial, researching CBT for people with Severe ME, was a complete failure.