About severe M.E. (Myalgic Encephalomyelitis)

Severe forms of Myalgic Encephalomyelitis (M.E.) are devastating and life destroying. The majority of people with severe M.E. are unable to work, have limited to no capacity to socialise or travel, and may require support from a carer or support workers for managing even basic tasks of daily life. Tragically, some people take their own lives. 

The experience of ME/CFS is different for each person, however a hallmark feature is a Post Exertional Malaise (PEM) or a Post-Exertional Neuroimmune Exhaustion (PENE), the worsening of symptoms after physical or mental activities.

People with severe M.E. may:

• Be bedbound
• Not able to leave their home
• Be reliant on a carer, such as a partner or family member
• Have extreme sensitivities of hearing, temperature, sight and smell. Some require eye masks and ear plugs, or secure their rooms with light blocking curtains, and have a hypersensitivity to many chemicals and perfumes
• Be living in a nursing home for round the clock or complex care, yet might be of a young age
• Wash themselves in bed with a wet cloth or wet wipes, or have carer support with this task
• Use a commode (a portable toilet near their bed) or bed pan
• Be tube fed meals
• Unable to speak and use other modes of communication

The International Consensus Criteria (ICC) defines M.E. as an “acquired neurological disease with complex global dysfunctions.” (Carruthers et al., 2011, Table 1) and notes that individuals with severe M.E. are mostly bedridden while those with very severe M.E. are totally bedridden and require help with basic functions (Carruthers et al., 2011, p.333).   

Here is how The 25% ME Group, a charity in Scotland (UK) for those with severe ME, describes severe M.E.

“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.”

People with severe ME/CFS suffer from substantial disability, however in Australia, many have found that valuable support services such as the Disability Support Pension (DSP) and 

National Disability Insurance Scheme (NDIS) are challenging to access. Although the process can be complex to navigate, the benefits of access are worth the persistence.