Severe ME/CFS

People with severe ME/CFS may spend much of their lives lying in the dark, avoiding any light or stimulation which might trigger post-exertional malaise. Photo: Lea Aring / Deutsche Gesellschaft fur ME/CFS.

Two excellent clinical guides to severe ME/CFS are:

Section 1.17 of the NICE guidance provides basic clinical advice on severe ME/CFS.

Dialogues: Severe & Very Severe ME/CFS is a set of three high-quality educational videos featuring interviews with expert clinicians, researchers, and patients living with the condition.

The 25% ME Group provides advice and advocacy to those suffering from severe ME.

Severe ME/CFS: the basics

About 25% of ME/CFS sufferers are classified as severe; these patients are mostly housebound, have significant cognitive problems, and are dependent upon care. Some are bedbound.

Some important considerations for this patient group:

  • They are unable to attend GP surgeries and require phone consultations or home visits.
  • They often have strong sensitivities to light, sound, or chemicals. Many live their lives in a darkened room, wearing noise-cancelling headphones.
  • Activities as simple as speaking on the phone or getting out of bed may prompt long-lasting post-exertional malaise (PEM). Exposure to light, sound or chemicals may also provoke PEM. They may also have significant cognitive dysfunction which may make communication difficult.
  • Hospital admissions are likely to provoke PEM, and should be planned in advance in consultation with the patient and their family/carers in order to minimize this. The patients will need a quiet room of their own. Family/carers should be consulted on how best to communicate with the patient and how to minimize PEM.
  • Patients with severe ME/CFS can become malnourished, for a variety of reasons; they may become unable to access food due to mobility problems, they may have severe gastrointestinal issues, or they may become too weak to chew or to swallow. These patients may have ‘normal’ test results. Nutrition should be provided promptly by whichever means is most appropriate.