Very severe myalgic encephalomyelitis or chronic fatigue syndrome

Very severe myalgic encephalomyelitis or very severe chronic fatigue syndrome or very severe ME/CFS is a serious and profoundly disabling neurological disease.

The level of disability in very severe ME/CFS causes severe restrictions on all aspects of everyday life. Hospital environments typically cause a significant increase in symptoms due to the sensory symptoms and lack of knowledge about the person's illness and needs.

NHS definition
Very severe ME/CFS

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.

The UK's National Health Service definition of severe and very severe ME/CFS can be found within the 2021 NICE guidelines.

International Consensus Criteria


Fluctuating level of symptoms
Symptoms may fluctuate in people with ME/CFS, but those with very severe ME/CFS will have persistently severe symptoms, and typically a very large number of symptoms affecting multiple bodily systems.

Advocacy
Patients with very severe ME are too ill to move independently and are totally reliant on carers.

They are usually unable to advocate for themselves since many lose all ability to speak or understand speech. Paralysis is common and may fluctuate.

Patients become vulnerable to medical neglect and abuse, including forced harmful treatment, which may be carried out with the best of intentions but still result in very serious harm or death. Clinicians may react with total disbelief and assume that the symptoms have another, more familiar cause, for example psychological disorders or fabricated induced illness (Munchausen's by proxy).

People

 * Emily Collingridge
 * Sophie Mirza
 * Whitney Dafoe
 * Linda Crowhurst