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 ME symptom scales
Substantial impairment and disability in adults can be measured using the following scales:
 * Energy Index Point Score


 * Fibromyalgia Impact Questionnaire Revised (FIQR)
 * Katz Index of Independence in Activities of Daily Living
 * The Lawton Instrumental Activities of Daily Living (IADL) Scale


 * Short-Form 36 Item Health Survey not specific to ME/CFS
 * RAND-36 - available as a free version of SF-36


 * Work and Social Adjustment Scale (WSAS)

Scales developed by patient organizations

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

Comparison
Some scales have a "ceiling effect" that means severe ME can not adequately be distinguished from very severe ME, or from moderate ME, including the Chalder fatigue scale.

Some patients who are severely ill may not have enough concentration to complete a questionnaire, or may be too ill to communicate, these patients may need another person to complete the rating scale instead, for example a carer or health professional. A pilot study of patients with severe CFS/ME in North East England found that even when visiting patients at home, some were unable to complete a questionnaire or to even attempt to stand.

Notable studies

 * 2000, Severe and Very Severe Patients with chronic fatigue syndrome Severe and very severe patients with chronic fatigue syndrome: perceived outcome following an inpatient programme.


 * 2000, The course of severe chronic fatigue syndrome in childhood
 * 2010, Being homebound with chronic fatigue syndrome: a multidimensional comparison with outpatients.
 * 2014, Severe M.E. Time to Deliver report.
 * 2017, Understanding severely affected chronic fatigue syndrome: CFS the gravity of the situation


 * 2017, What is known about severe and very severe chronic fatigue syndrome: A scoping review.


 * 2018, 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.

Severe ME Advocacy groups

 * 25 Percent ME Group
 * Greg Crowhurst (carer for his wife Linda Crowhurst)


 * Stonebird
 * The Hummingbirds Foundation for M.E.

People with Severe ME

 * Jodi Bassett
 * Merryn Crofts
 * Linda Crowhurst
 * Whitney Dafoe
 * Sophia Mirza
 * Naomi Whittingham
 * Lynn Gilderdale

Severe ME blogs and websites

 * A Life Hidden
 * Stonebird

Learn more

 * Comprehensive list of M.E.Symptoms
 * My life stopped - severe M.E report
 * Severe M.E. symptoms
 * Supporting people with severe Myalgic Encephalomyelitis
 * Woman, 33, has been living in a dementia ward for FIVE years after falling ill with crippling condition