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[edit | edit source]
Substantial impairment and disability in adults can be measured using the following scales:
- 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
Scales developed by patient organizations[edit | edit source]
Comparison[edit | edit source]
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.
Analysis[edit | edit source]
Notable studies[edit | edit source]
- 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
- 2007, Severe Chronic Fatigue Syndrome: Recovery is possible
- 2010, Being homebound with chronic fatigue syndrome: a multidimensional comparison with outpatients.
- 2014, Severe M.E. Time to Deliver report.
- 2016, Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents’ Experiences
- 2017, Understanding severely affected chronic fatigue syndrome: CFS the gravity of the situation 
- 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. 
- 2018, Improvement of severe ME/CFS symptoms following surgical treatment of cervical spinal stenosis
See also[edit | edit source]
- Myalgic encephalomyelitis
- Rare and uncommon symptoms
- Symptom scales
- Causes of death
- Periodic paralysis
Severe ME Advocacy groups[edit | edit source]
People with Severe ME[edit | edit source]
- Jodi Bassett
- Merryn Crofts
- Linda Crowhurst
- Whitney Dafoe
- Lynn Gilderdale
- Sophia Mirza
- Naomi Whittingham
Severe ME blogs and websites[edit | edit source]
Learn more[edit | edit source]
- 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
Very severe ME patient's experience video[edit | edit source]
References[edit | edit source]
- Institute of Medicine (U.S.) Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: redefining an illness. Washington, D.C. p. 32. ISBN 9780309316903. OCLC 906233426.
- "25% M.E. Group - Supporting Those With Severe M.E." 25% M.E. Group. Retrieved Oct 13, 2018.
- Carruthers, Bruce M.; van de Sande, Marjorie I.; De Meirleir, Kenny L.; Klimas, Nancy G.; Broderick, Gordon; Mitchell, Terry; Staines, Donald; Powles, A. C. Peter; Speight, Nigel; Vallings, Rosamund; Bateman, Lucinda; Baumgarten-Austrheim, Barbara; Bell, David; Carlo-Stella, Nicoletta; Chia, John; Darragh, Austin; Jo, Daehyun; Lewis, Donald; Light, Alan; Marshall-Gradisnik, Sonya; Mena, Ismael; Mikovits, Judy; Miwa, Kunihisa; Murovska, Modra; Pall, Martin; Stevens, Staci (Aug 22, 2011). "Myalgic encephalomyelitis: International Consensus Criteria". Journal of Internal Medicine. 270 (4): 327–338. doi:10.1111/j.1365-2796.2011.02428.x. ISSN 0954-6820. PMC . PMID 21777306.
- Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Board on the Health of Select Populations, Institute of Medicine (Feb 10, 2015). Questionnaires and Tools That May Be Useful for Assessing ME/CFS Symptoms. National Academies Press (US).
- Shelkey, Mary; Wallace, Meredith (2012). "Katz Index of Independence in Activities of Daily Living (ADL)" (PDF).
- Graf, Carla (Nov 23, 2015). "The Lawton Instrumental Activities of Daily Living (IADL) Scale | ConsultGeri Assessment Tool". ConsultGeri. Retrieved Oct 13, 2018.
- "36-Item Short Form Survey from the RAND Medical Outcomes Study". www.rand.org. Retrieved Oct 13, 2018.
- "Work and Social Adjustment Scale" (PDF). serene.me.
- Jason, Leonard A.; Evans, Meredyth; Brown, Molly; Porter, Nicole; Brown, Abigail; Hunnell, Jessica; Anderson, Valerie; Lerch, Athena (2011). "Fatigue Scales and Chronic Fatigue Syndrome: Issues of Sensitivity and Specificity". Disability studies quarterly : DSQ. 31 (1). ISSN 1041-5718. PMC . PMID 21966179.
- Strassheim, Victoria Jane; Sunquist, Madison; Jason, Leonard A; Newton, Julia (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" (PDF). BMJ open. 8 (9): e020775. doi:10.1136/bmjopen-2017-020775.
- Cox, Diane L.; Findley, Leslie J. (2000). "Severe and Very Severe Patients with Chronic Fatigue Syndrome". Journal of Chronic Fatigue Syndrome. 7 (3): 33–47. doi:10.1300/j092v07n03_04. ISSN 1057-3321.
- Rangel, L; Garralda, M E; Levin, M; Roberts, H (2000). "The course of severe chronic fatigue syndrome in childhood" (PDF). Journal of the Royal Society of Medicine. 93 (3): 129–134. doi:10.1177/014107680009300306. PMID 10741312.
- Burley, Lucy; Cox, Diane; Findley, Leslie (Aug 1, 2007). "Severe Chronic Fatigue Syndrome: Recovery is Possible" (PDF). British Journal of Occupational Therapy. pp. 339–344. doi:10.1177/030802260707000803. Retrieved Feb 11, 2019.
- Wiborg, Jan F.; van der Werf, Sieberen; Prins, Judith B.; Bleijenberg, Gijs (May 2010). "Being homebound with chronic fatigue syndrome: A multidimensional comparison with outpatients". Psychiatry Research. 177 (1-2): 246–249. doi:10.1016/j.psychres.2010.02.010. ISSN 0165-1781.
- Pates, Andrew (Nov 14, 2014). "Severe M.E. Time to Deliver - Report" (PDF). actionforme.org.uk.
- Mihelicova, Martina; Siegel, Zachary; Evans, Meredyth; Brown, Abigail; Jason, Leonard (Dec 2016). "Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents' Experiences". Journal of health psychology. 21 (12): 2824–2837. doi:10.1177/1359105315587137. ISSN 1359-1053. PMC . PMID 26063209.
- Strassheim, Victoria Jane; Lambson, Rebecca; Hackett, Katie; Newton, Julia L (2017). "Understanding severely affected chronic fatigue syndrome (CFS): the gravity of the situation". Physical Therapy Reviews. 22 (3-4): 197–201. doi:10.1080/10833196.2017.1327131. Retrieved Oct 20, 2018.
- Strassheim, Victoria; Lambson, Rebecca; Hackett, Katie L.; Newton, Julia L. (Jun 19, 2017). "What is known about severe and very severe chronic fatigue syndrome? A scoping review". Fatigue: Biomedicine, Health & Behavior. 5 (3): 167–183. doi:10.1080/21641846.2017.1333185. ISSN 2164-1846.
- Rowe, Peter C.; Marden, Colleen L.; Heinlein, Scott; Edwards, Charles C. (Feb 2, 2018). "Improvement of severe myalgic encephalomyelitis/chronic fatigue syndrome symptoms following surgical treatment of cervical spinal stenosis". Journal of Translational Medicine. 16 (1): 21. doi:10.1186/s12967-018-1397-7. ISSN 1479-5876. PMC . PMID 29391028.
- Bassett, Jodi (Jun 2012). "The comprehensive M.E. symptom list" (PDF). The Hummingbirds' Foundation for M.E. (HFME). Retrieved Dec 12, 2018.
- The Grace Charity for M.E.; 25% ME Group (Jan 2019). "KNOWLEDGE IN THE HOPE OF PROTECTING M.E. SUFFERERS FROM UNNECESSARY SECTIONING". Retrieved Jul 12, 2019.
- Pates, Andrew (Nov 14, 2014). "My life stopped..." (PDF). actionforme.org.uk. Action for ME.
- "Symptoms - 25% M.E. Group". 25% M.E. Group. Retrieved Oct 20, 2018.
- Crowhurst, Greg (2005). "Supporting people with severe myalgic encephalomyelitis" (PDF). me-foreningen.dk. Nursing Standard – via Art and Science Chronic Illness.
- Rolfe, Brooke (Oct 16, 2018). "Woman, 33, has been living on a dementia ward for FIVE years". Mail Online. Retrieved Oct 17, 2018.
- The Caged Bird (2016). "ME Awareness May 2016". YouTube. Let's Do It for ME. Retrieved Jan 28, 2019.
Myalgic encephalomyelitis or chronic fatigue syndrome