Severe and very severe ME









Severe and very severe ME affects about 25% of people with myalgic encephalomyelitis (ME), with patients being housebound or bedbound at some point in their illness, typically needing to use a wheelchair, unable to do any kind of work or study, and often unable to do basic self-care activities unaided. Some people have died of ME, including Sophia Mirza and Merryn Crofts.

There is no generally agreed upon description of severe or very severe ME, but different clinical scales can be used to measure the degree of disability. Very little research has described the symptoms and experiences of patients with severe ME or very severe ME, much of what is known comes from patient and advocacy groups.

Severe M.E. Symptoms
Substantial impairment and disability in adults can be measured using the following scales:
 * Work and Social Adjustment Scale (WSAS)
 * Energy index score - Treatment center for CFS


 * Energy Index Point Score
 * Short-Form 36 Item Health Survey
 * RAND-36 - available as a free version of SF-36
 * The Lawton Instrumental Activities of Daily Living (IADL) Scale


 * Katz Index of Independence in Activities of Daily Living


 * Fibromyalgia Impact Questionnaire Revised (FIQR)

Scales developed by patient organizations

 * HFME 3 Part M.E. Ability and Severity Scale

Notable Studies
Victoria Jane Strassheim, Madison Sunnquist, Leonard A Jason, Julia L Newton.
 * Defining the prevalence and symptom burden of those with self-reported severe chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a two-phase community pilot study in the North East of England.
 * What is known about severe and very severe chronic fatigue syndrome: A scoping review
 * Severe and Very Severe Patients with chronic fatigue syndrome
 * Being homebound with chronic fatigue syndrome
 * The course of severe chronic fatigue syndrome in childhood

Learn more

 * Stonebird


 * 25 Percent ME Group


 * Comprehensive M.E. Symptoms List
 * My life stopped - severe M.E report
 * Myalgic encephalomyelitis
 * Woman, 33, has been living in a dementia ward for FIVE years after falling ill with crippling condition