Severe and very severe ME



Severe and very severe ME affects about 25% of people with myalgic encephalo&shy;myelitis (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.

What is Severe ME?
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.

A study of 19 bedbound patients with severe ME and orthostatic intolerance by van Campen et al (2020) found an average 27% decrease in blood flow to the brain during a 20 degree tilt table test that lasted just 15 minutes. Some patients could not tolerate the orthostatic symptoms for 15 mins and had to finish the test early. The patients average 35 years of age and had been ill on average 14 years. All the severely ill patients had abnormal drops in blood flow to the brain.

https://www.youtube-nocookie.com/watch?v=rVsOeZjhMFY&autoplay=0

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 which is 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. 

Very severe ME
Merryn weighed six stone (84 lbs) and was just 21 years old when she died; her autopsy revealed ganglia inflammation. It is suspected that in the later years of her illness Merryn also suffered from EDS and MCAD. Her death certificate was reported to be the second in the UK to attribute a death to myalgic encephalomyelitis (M.E.).

Doctors initially suggested that Merryn was having panic attacks, and her family were later told that she may have conversion disorder, a mental condition formerly known as hysteria. "I knew it wasn't. I work with people who have panic attacks and I can talk them down," said Clare. "Merryn was starting to think 'What if it is in my head?' It made her doubt herself, which is awful." Eventually a private doctor diagnosed Merryn with ME and she began to receive treatment on the NHS. Within six months of falling ill she was using a wheelchair, and within a year she was housebound. A very severe ME patient's experience video shows clear signs of muscle wasting and disability - but for the majority of patients it remains an invisible illness.

People with very severe ME are totally bedbound and unable to stand at all. Some people with very severe ME have improved over time, or after surgery from cervical spinal stenosis.

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 - (Full text)
 * 2000, The course of severe chronic fatigue syndrome in childhood - (Full text)
 * 2007, Severe Chronic Fatigue Syndrome: Recovery is possible - (Full text)
 * 2009, Risk factors for severe ME/CFS - (Full text)
 * 2010, Being homebound with chronic fatigue syndrome: a multidimensional comparison with outpatients - (Full text)
 * 2014, Severe M.E. Time to Deliver report - (Full text)
 * 2014, What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise - (Full text)
 * 2016, Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents' Experiences - (Full text)
 * 2016, Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome - (Full text)
 * 2017, Understanding severely affected chronic fatigue syndrome: CFS the gravity of the situation - (Full text)
 * 2017, What is known about severe and very severe chronic fatigue syndrome: A scoping review - (Full text)
 * 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. - (Full text)
 * 2018, Improvement of severe ME/CFS symptoms following surgical treatment of cervical spinal stenosis - (Full text)


 * 2020, The effect of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) severity on cellular bioenergetic function - (Full text)


 * 2020, Special Issue: "ME/CFS: The Severely and Very Severely Affected" Healthcare


 * 2020, Cerebral Blood Flow Is Reduced in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients During Mild Orthostatic Stress Testing: An Exploratory Study at 20 Degrees of Head-Up Tilt Testing - (Full text)
 * 2020, Validation of the Severity of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by Other Measures than History: Activity Bracelet, Cardiopulmonary Exercise Testing and a Validated Activity Questionnaire: SF-36 - (Full text)
 * 2020, Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients - (Full text)


 * 2020, Severe ME in children - (Full text)
 * 2020, Two-Day Cardiopulmonary Exercise Testing in Females with a Severe Grade of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Comparison with Patients with Mild and Moderate Disease - (Full text)
 * 2021, Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis - (Full text)
 * 2021, Systematic Review of Sleep Characteristics in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - (Full text)
 * 2021, CFS patients remain severely disabled after specialist treatment with CBT in the UK - (Full text)
 * 2021, Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected - (Full text)
 * 2021, Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - (Full text)
 * 2021, Life-Threatening Malnutrition in Very Severe ME/CFS - (Full text)

Severe ME Advocacy groups

 * 25 Percent ME Group
 * The Hummingbirds Foundation for M.E.

People with Severe or Very Severe ME

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

Severe ME blogs and websites

 * A Life Hidden
 * Stonebird (Greg Crowhurst and Linda Crowhurst)

Learn more

 * Comprehensive list of M.E.Symptoms - Hummingbirds' Foundation for M.E.
 * KNOWLEDGE IN THE HOPE OF PROTECTING M.E. SUFFERERS FROM UNNECESSARY SECTIONING - Preventing the unnecessary forced mental health sectioning of severely ill patients - The Grace Charity for M.E. with 25% ME Group
 * My life stopped - severe M.E report - Action for ME
 * Severe M.E. symptoms - 25% ME Group
 * Supporting people with severe Myalgic Encephalomyelitis - Greg Crowhurst
 * Woman, 33, has been living in a dementia ward for FIVE years after falling ill with crippling condition