Severe and very severe ME

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Linda Crowhurst is very severely ill with ME. Her husband Greg Crowhurst is Linda's full-time carer. This still is from the music video Wasteland which delicately documents Linda's 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,[1] 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.[2] Some people have died of ME, including Sophia Mirza and Merryn Crofts.

What is Severe ME?[edit | edit source]

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.[3][4] 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.

Hope for a Better Moment by Linda Crowhurst. This video clearly documents Linda's neurological symptoms of her very severe ME


Severe ME symptom scales[edit | edit source]

Jennie Spotila is an American ME patient who fell ill in 1994. Jennie is mostly housebound, and relies on a wheelchair. She has been an ME/CFS advocate for many years.

Substantial impairment and disability in adults can be measured using the following scales:

Scales developed by patient organizations[edit | edit source]

Comparison[edit | edit source]

Whitney Dafoe is an American photographer who has very severe ME. Whitney can no longer speak or handle contact with anyone but his parents due to visual dysfunction. His father is Ron Davis, a world-renowned geneticist who is working to solve his son's disease

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.[9]

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.[10]

Naomi Whittingham lives in the UK with a severe case of ME. Naomi became ill at age 12 with a routine virus and never recovered. She advocates for ME by doing interviews, writing the blog A Life Hidden, and supporting her brother Tom Whittingham's marathon fundraising for ME Research UK

Notable studies[edit | edit source]

See also[edit | edit source]

Merryn Crofts was bedbound and unable to eat. Merryn weighed six stone (84 lbs) at her death; 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 is the 2nd in the UK to attribute a death to ME

Severe ME Advocacy groups[edit | edit source]

People with Severe ME[edit | edit source]

Severe ME blogs and websites[edit | edit source]

Learn more[edit | edit source]

Very severe ME patient's experience video[edit | edit source]

ME Awareness May 2016 - very severe ME.
Video by The Caged Bird, via Let's Do It for ME.

People with very severe ME are totally bedbound and unable to stand at all.[10][21]

Some people with very severe ME have improved over time, or after surgery from cervical spinal stenosis.[30][22]

References[edit | edit source]

  1. 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. 
  2. "25% M.E. Group - Supporting Those With Severe M.E." 25% M.E. Group. Retrieved Oct 13, 2018. 
  3. 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 3427890Freely accessible. PMID 21777306. 
  4. 4.04.1 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). 
  5. Shelkey, Mary; Wallace, Meredith (2012). "Katz Index of Independence in Activities of Daily Living (ADL)" (PDF). 
  6. Graf, Carla (Nov 23, 2015). "The Lawton Instrumental Activities of Daily Living (IADL) Scale | ConsultGeri Assessment Tool". ConsultGeri. Retrieved Oct 13, 2018. 
  7. "36-Item Short Form Survey from the RAND Medical Outcomes Study". www.rand.org. Retrieved Oct 13, 2018. 
  8. "Work and Social Adjustment Scale" (PDF). serene.me. 
  9. 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 3181109Freely accessible. PMID 21966179. 
  10. 10.010.110.2 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. 
  11. 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. 
  12. 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. 
  13. 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. 
  14. Pheby, Derek; Saffron, Lisa (2009). "Risk factors for severe ME/CFS" (PDF). Biology and Medicine. 1 (4): 50–74. 
  15. 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. 
  16. Pates, Andrew (Nov 14, 2014). "Severe M.E. Time to Deliver - Report" (PDF). actionforme.org.uk. 
  17. McDermott, Clare; Al Haddabi, Atheer; Akagi, Hiroko; Selby, Michelle; Cox, Diane; Lewith, George (Jun 19, 2014). "What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise". BMJ Open. 4 (6): 292–307. doi:10.1136/bmjopen-2014-005083. ISSN 2044-6055. PMC 4078780Freely accessible. PMID 24984956. 
  18. 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 4675701Freely accessible. PMID 26063209. 
  19. Pendergrast, Tricia; Brown, Abigail; Sunnquist, Madison; Jantke, Rachel; Newton, Julia L; Strand, Elin Bolle; Jason, Leonard A (Dec 2016). "Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome". Chronic illness. 12 (4): 292–307. doi:10.1177/1742395316644770. ISSN 1742-3953. PMC 5464362Freely accessible. PMID 27127189. 
  20. 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. 
  21. 21.021.1 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. 
  22. 22.022.1 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 5796598Freely accessible. PMID 29391028. 
  23. https://www.mdpi.com/journal/healthcare/special_issues/me_cfs_issue?
  24. Bassett, Jodi (Jun 2012). "The comprehensive M.E. symptom list" (PDF). The Hummingbirds' Foundation for M.E. (HFME). Retrieved Dec 12, 2018. 
  25. 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. 
  26. Pates, Andrew (Nov 14, 2014). "My life stopped..." (PDF). actionforme.org.uk. Action for ME. 
  27. "Symptoms - 25% M.E. Group". 25% M.E. Group. Retrieved Oct 20, 2018. 
  28. Crowhurst, Greg (2005). "Supporting people with severe myalgic encephalomyelitis" (PDF). me-foreningen.dk. Nursing Standard – via Art and Science Chronic Illness. 
  29. Rolfe, Brooke (Oct 16, 2018). "Woman, 33, has been living on a dementia ward for FIVE years". Mail Online. Retrieved Oct 17, 2018. 
  30. The Caged Bird (2016). "ME Awareness May 2016". YouTube. Let's Do It for ME. Retrieved Jan 28, 2019. 

myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

Action for ME (AfME) - Action for ME is a British non-profit organization that was set up in 1987 as The M.E. Action Campaign. Its founders were Martin Lev, Sue Findlay and Clare Francis. In September 1993 it changed its name and logo to Action for ME and Chronic Fatigue. It then changed its name in 1993 to Action for ME.

myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

chronic fatigue syndrome (CFS) - A controversial term, invented by the U.S. Centers for Disease Control, that generally refers to a collection of symptoms as “fatigue”. There have been multiple attempts to come up with a set of diagnostic criteria to define this term, but few of those diagnostic criteria are currently in use. Previous attempts to define this term include the Fukuda criteria and the Oxford criteria. Some view the term as a useful diagnostic category for people with long-term fatigue of unexplained origin. Others view the term as a derogatory term borne out of animus towards patients. Some view the term as a synonym of myalgic encephalomyelitis, while others view myalgic encephalomyelitis as a distinct disease.

BMJ - The BMJ (previously the British Medical Journal) is a weekly peer-reviewed medical journal.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.