Severe and very severe ME: Difference between revisions

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
m (→‎Comparison: left align image of Naomi)
m (→‎Notable studies: add Healthcare special issue of journal)
Line 38: Line 38:
==Notable studies==
==Notable studies==
* 2000, [https://www.tandfonline.com/doi/abs/10.1300/J092v07n03_04 Severe and Very Severe Patients with chronic fatigue syndrome Severe and very severe patients with chronic fatigue syndrome: perceived outcome following an inpatient programme.]<ref>{{Cite journal|last=Cox|first=Diane L.|last2=Findley|first2=Leslie J.|date=2000|title=Severe and Very Severe Patients with Chronic Fatigue Syndrome|url=https://www.tandfonline.com/doi/abs/10.1300/J092v07n03_04|journal=Journal of Chronic Fatigue Syndrome|language=en|volume=7|issue=3|pages=33–47|doi=10.1300/j092v07n03_04|issn=1057-3321|via=|quote=|author-link=Diane Cox|author-link2=Leslie Findley|author-link3=|author-link4=|author-link5=}}</ref>
* 2000, [https://www.tandfonline.com/doi/abs/10.1300/J092v07n03_04 Severe and Very Severe Patients with chronic fatigue syndrome Severe and very severe patients with chronic fatigue syndrome: perceived outcome following an inpatient programme.]<ref>{{Cite journal|last=Cox|first=Diane L.|last2=Findley|first2=Leslie J.|date=2000|title=Severe and Very Severe Patients with Chronic Fatigue Syndrome|url=https://www.tandfonline.com/doi/abs/10.1300/J092v07n03_04|journal=Journal of Chronic Fatigue Syndrome|language=en|volume=7|issue=3|pages=33–47|doi=10.1300/j092v07n03_04|issn=1057-3321|via=|quote=|author-link=Diane Cox|author-link2=Leslie Findley|author-link3=|author-link4=|author-link5=}}</ref>
* 2000, [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1297949/pdf/10741312.pdf The course of severe chronic fatigue syndrome in childhood]<ref>{{Cite journal|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1297949/pdf/10741312.pdf|title=The course of severe chronic fatigue syndrome in childhood|last=Rangel|first=L|last2=Garralda|first2=M E|date=2000|journal=Journal of the Royal Society of Medicine|pages=129-134|volume=93|issue=3|archive-url=|archive-date=|dead-url=|access-date=|last3=Levin|first3=M|last4=Roberts|first4=H|doi=10.1177/014107680009300306|pmid=10741312|authorlink=Luiza Rangel|authorlink2=Elena Garralda}}</ref>
* 2000, [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1297949/pdf/10741312.pdf The course of severe chronic fatigue syndrome in childhood]<ref>{{Cite journal|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1297949/pdf/10741312.pdf|title=The course of severe chronic fatigue syndrome in childhood|last=Rangel|first=L|last2=Garralda|first2=M E|date=2000|journal=Journal of the Royal Society of Medicine|pages=129-134|volume=93|issue=3|archive-url=|archive-date=|dead-url=|access-date=|last3=Levin|first3=M|last4=Roberts|first4=H|doi=10.1177/014107680009300306|pmid=10741312|authorlink=Luiza Rangel|authorlink2=Elena Garralda}}</ref>
* 2007, [https://doi.org/10.1177%2F030802260707000803&#x20;https://www.researchgate.net/profile/Diane_Cox2/publication/257764167_Severe_Chronic_Fatigue_Syndrome_CFSME_Recovery_is_possible/links/00b49525d3a11018ad000000/Severe-Chronic-Fatigue-Syndrome-CFS-ME-Recovery-is-possible.pdf Severe Chronic Fatigue Syndrome: Recovery is possible]<ref>{{Cite web|url=https://www.researchgate.net/profile/Diane_Cox2/publication/257764167_Severe_Chronic_Fatigue_Syndrome_CFSME_Recovery_is_possible/links/00b49525d3a11018ad000000/Severe-Chronic-Fatigue-Syndrome-CFS-ME-Recovery-is-possible.pdf|title=Severe Chronic Fatigue Syndrome: Recovery is Possible|last=Burley|first=Lucy|authorlink=Lucy Burley|last2=Cox|first2=Diane|authorlink2=Diane Cox|date=Aug 1, 2007|pages=339-344|language=en|doi=10.1177/030802260707000803|archive-url=|archive-date=|dead-url=|access-date=2019-02-11|last3=Findley|first3=Leslie|journal=British Journal of Occupational Therapy|volume=70|issue=8|author-link3=Leslie Findley}}</ref>
* 2007, [https://doi.org/10.1177%2F030802260707000803&#x20;https://www.researchgate.net/profile/Diane_Cox2/publication/257764167_Severe_Chronic_Fatigue_Syndrome_CFSME_Recovery_is_possible/links/00b49525d3a11018ad000000/Severe-Chronic-Fatigue-Syndrome-CFS-ME-Recovery-is-possible.pdf Severe Chronic Fatigue Syndrome: Recovery is possible]<ref>{{Cite web|url=https://www.researchgate.net/profile/Diane_Cox2/publication/257764167_Severe_Chronic_Fatigue_Syndrome_CFSME_Recovery_is_possible/links/00b49525d3a11018ad000000/Severe-Chronic-Fatigue-Syndrome-CFS-ME-Recovery-is-possible.pdf|title=Severe Chronic Fatigue Syndrome: Recovery is Possible|last=Burley|first=Lucy|authorlink=Lucy Burley|last2=Cox|first2=Diane|authorlink2=Diane Cox|date=Aug 1, 2007|pages=339-344|language=en|doi=10.1177/030802260707000803|archive-url=|archive-date=|dead-url=|access-date=2019-02-11|last3=Findley|first3=Leslie|journal=British Journal of Occupational Therapy|volume=70|issue=8|author-link3=Leslie Findley}}</ref>
Line 48: Line 47:
*2016, [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464362/ Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome]<ref name="Pendergrast2016">{{Cite journal|last=Pendergrast|first=Tricia|author-link=Tricia Pendergrast|last2=Brown|first2=Abigail|author-link2=Abigail Brown|last3=Sunnquist|first3=Madison|author-link3=Madison Sunnquist|last4=Jantke|first4=Rachel|author-link4=Rachel Jantke|last5=Newton|first5=Julia L|author-link5=Julia Newton|last6=Strand|first6=Elin Bolle|author-link6=Elin Strand|last7=Jason|first7=Leonard A|author-link7=Leonard Jason|date=Dec 2016|title=Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464362/|journal=Chronic illness|volume=12|issue=4|pages=292–307|doi=10.1177/1742395316644770|issn=1742-3953|pmc=5464362|pmid=27127189|access-date=|quote=|via=}}</ref>
*2016, [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464362/ Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome]<ref name="Pendergrast2016">{{Cite journal|last=Pendergrast|first=Tricia|author-link=Tricia Pendergrast|last2=Brown|first2=Abigail|author-link2=Abigail Brown|last3=Sunnquist|first3=Madison|author-link3=Madison Sunnquist|last4=Jantke|first4=Rachel|author-link4=Rachel Jantke|last5=Newton|first5=Julia L|author-link5=Julia Newton|last6=Strand|first6=Elin Bolle|author-link6=Elin Strand|last7=Jason|first7=Leonard A|author-link7=Leonard Jason|date=Dec 2016|title=Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464362/|journal=Chronic illness|volume=12|issue=4|pages=292–307|doi=10.1177/1742395316644770|issn=1742-3953|pmc=5464362|pmid=27127189|access-date=|quote=|via=}}</ref>
* 2017, [https://www.tandfonline.com/doi/full/10.1080/10833196.2017.1327131 Understanding severely affected chronic fatigue syndrome: CFS the gravity of the situation] <ref>{{Cite journal|url=https://www.tandfonline.com/doi/full/10.1080/10833196.2017.1327131|journal=Physical Therapy Reviews|title=Understanding severely affected chronic fatigue syndrome (CFS): the gravity of the situation|last=Strassheim|first=Victoria Jane|last2=Lambson|first2=Rebecca|date=2017|volume=22|issue=3-4|website=|language=en|archive-url=|archive-date=|dead-url=|access-date=2018-10-20|last3=Hackett|first3=Katie|last4=Newton|first4=Julia L|pages=197-201|doi=10.1080/10833196.2017.1327131|authorlink=Victoria Strassheim|authorlink2=Rebecca Lambson|authorlink3=Katie Hackett|authorlink4=Julia Newton}}</ref>
* 2017, [https://www.tandfonline.com/doi/full/10.1080/10833196.2017.1327131 Understanding severely affected chronic fatigue syndrome: CFS the gravity of the situation] <ref>{{Cite journal|url=https://www.tandfonline.com/doi/full/10.1080/10833196.2017.1327131|journal=Physical Therapy Reviews|title=Understanding severely affected chronic fatigue syndrome (CFS): the gravity of the situation|last=Strassheim|first=Victoria Jane|last2=Lambson|first2=Rebecca|date=2017|volume=22|issue=3-4|website=|language=en|archive-url=|archive-date=|dead-url=|access-date=2018-10-20|last3=Hackett|first3=Katie|last4=Newton|first4=Julia L|pages=197-201|doi=10.1080/10833196.2017.1327131|authorlink=Victoria Strassheim|authorlink2=Rebecca Lambson|authorlink3=Katie Hackett|authorlink4=Julia Newton}}</ref>
* 2017, [https://www.tandfonline.com/doi/full/10.1080/21641846.2017.1333185 What is known about severe and very severe chronic fatigue syndrome: A scoping review].<ref name=":1">{{Cite journal|last=Strassheim|first=Victoria|last2=Lambson|first2=Rebecca|last3=Hackett|first3=Katie L.|last4=Newton|first4=Julia L.|date=2017-06-19|title=What is known about severe and very severe chronic fatigue syndrome? A scoping review|url=https://www.tandfonline.com/doi/full/10.1080/21641846.2017.1333185|journal=Fatigue: Biomedicine, Health & Behavior|language=en|volume=5|issue=3|pages=167–183|doi=10.1080/21641846.2017.1333185|issn=2164-1846|quote=|author-link=Victoria Strassheim|author-link2=Rebecca Lambson|author-link3=Katie Hackett|author-link4=Julia Newton|author-link5=|via=}}</ref>  
* 2017, [https://www.tandfonline.com/doi/full/10.1080/21641846.2017.1333185 What is known about severe and very severe chronic fatigue syndrome: A scoping review].<ref name=":1">{{Cite journal|last=Strassheim|first=Victoria|last2=Lambson|first2=Rebecca|last3=Hackett|first3=Katie L.|last4=Newton|first4=Julia L.|date=2017-06-19|title=What is known about severe and very severe chronic fatigue syndrome? A scoping review|url=https://www.tandfonline.com/doi/full/10.1080/21641846.2017.1333185|journal=Fatigue: Biomedicine, Health & Behavior|language=en|volume=5|issue=3|pages=167–183|doi=10.1080/21641846.2017.1333185|issn=2164-1846|quote=|author-link=Victoria Strassheim|author-link2=Rebecca Lambson|author-link3=Katie Hackett|author-link4=Julia Newton|author-link5=|via=}}</ref>  
* 2018, [https://bmjopen.bmj.com/content/bmjopen/8/9/e020775.full.pdf 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.] <ref name="northeast">{{Cite journal|url=https://bmjopen.bmj.com/content/bmjopen/8/9/e020775.full.pdf|title=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|last=Strassheim|first=Victoria Jane|last2=Sunquist|first2=Madison|date=2018|journal=BMJ open|volume=8|issue=9|pages=e020775|archive-url=|archive-date=|dead-url=|access-date=|last3=Jason|first3=Leonard A|last4=Newton|first4=Julia|doi=10.1136/bmjopen-2017-020775|authorlink=Victoria Strassheim|authorlink2=Madison Sunnquist|authorlink3=Leonard Jason|authorlink4=Julia Newton}}</ref>
* 2018, [https://bmjopen.bmj.com/content/bmjopen/8/9/e020775.full.pdf 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.] <ref name="northeast">{{Cite journal|url=https://bmjopen.bmj.com/content/bmjopen/8/9/e020775.full.pdf|title=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|last=Strassheim|first=Victoria Jane|last2=Sunquist|first2=Madison|date=2018|journal=BMJ open|volume=8|issue=9|pages=e020775|archive-url=|archive-date=|dead-url=|access-date=|last3=Jason|first3=Leonard A|last4=Newton|first4=Julia|doi=10.1136/bmjopen-2017-020775|authorlink=Victoria Strassheim|authorlink2=Madison Sunnquist|authorlink3=Leonard Jason|authorlink4=Julia Newton}}</ref>
* 2018, [https://link.springer.com/article/10.1186/s12967-018-1397-7 Improvement of severe ME/CFS symptoms following surgical treatment of cervical spinal stenosis]<ref name=":2">{{Cite journal|last=Rowe|first=Peter C.|author-link=Peter Rowe|last2=Marden|first2=Colleen L.|author-link2=Colleen Marden|last3=Heinlein|first3=Scott|author-link3=Scott Heinlein|last4=Edwards|first4=Charles C.|author-link4=Charles Edwards|author-link5=|date=2018-02-02|title=Improvement of severe myalgic encephalomyelitis/chronic fatigue syndrome symptoms following surgical treatment of cervical spinal stenosis|url=https://doi.org/10.1186/s12967-018-1397-7|journal=Journal of Translational Medicine|language=en|volume=16|issue=1|pages=21|doi=10.1186/s12967-018-1397-7|issn=1479-5876|pmc=5796598|pmid=29391028|quote=|via=}}</ref>
* 2018, [https://link.springer.com/article/10.1186/s12967-018-1397-7 Improvement of severe ME/CFS symptoms following surgical treatment of cervical spinal stenosis]<ref name=":2">{{Cite journal|last=Rowe|first=Peter C.|author-link=Peter Rowe|last2=Marden|first2=Colleen L.|author-link2=Colleen Marden|last3=Heinlein|first3=Scott|author-link3=Scott Heinlein|last4=Edwards|first4=Charles C.|author-link4=Charles Edwards|author-link5=|date=2018-02-02|title=Improvement of severe myalgic encephalomyelitis/chronic fatigue syndrome symptoms following surgical treatment of cervical spinal stenosis|url=https://doi.org/10.1186/s12967-018-1397-7|journal=Journal of Translational Medicine|language=en|volume=16|issue=1|pages=21|doi=10.1186/s12967-018-1397-7|issn=1479-5876|pmc=5796598|pmid=29391028|quote=|via=}}</ref>
*2020, [https://www.mdpi.com/journal/healthcare/special_issues/me_cfs_issue? Special Issue: "ME/CFS: The Severely and Very Severely Affected"] Healthcare<ref name="specialissue2020">https://www.mdpi.com/journal/healthcare/special_issues/me_cfs_issue?</ref>


==See also==
==See also==

Revision as of 23:06, April 6, 2020

Linda Crowhurst is married to Greg Crowhurst; they reside in Belfast, Northern Ireland. Greg is Linda's full-time carer as she is very severely ill with ME. 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.

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 on October 6, 1994. Jennie is disabled, mostly housebound, and uses a wheelchair but has been an ME/CFS advocate for many years. She writes the blog Occupy M.E.

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 a very severe form of 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 October 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 (August 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 3427890. PMID 21777306.
  4. 4.0 4.1 Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Board on the Health of Select Populations, Institute of Medicine (February 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). Cite has empty unknown parameter: |dead-url= (help)
  6. Graf, Carla (November 23, 2015). "The Lawton Instrumental Activities of Daily Living (IADL) Scale | ConsultGeri Assessment Tool". ConsultGeri. Retrieved October 13, 2018. Cite has empty unknown parameter: |dead-url= (help)
  7. "36-Item Short Form Survey from the RAND Medical Outcomes Study". www.rand.org. Retrieved October 13, 2018.
  8. "Work and Social Adjustment Scale" (PDF). serene.me. Cite has empty unknown parameter: |dead-url= (help)
  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 3181109. PMID 21966179.
  10. 10.0 10.1 10.2 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. Cite has empty unknown parameter: |dead-url= (help)
  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. Cite has empty unknown parameter: |dead-url= (help)
  13. Burley, Lucy; Cox, Diane; Findley, Leslie (August 1, 2007). "Severe Chronic Fatigue Syndrome: Recovery is Possible" (PDF). British Journal of Occupational Therapy. pp. 339–344. doi:10.1177/030802260707000803. Retrieved February 11, 2019. Cite has empty unknown parameter: |dead-url= (help)
  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 (November 14, 2014). "Severe M.E. Time to Deliver - Report" (PDF). actionforme.org.uk. Cite has empty unknown parameter: |dead-url= (help)
  17. McDermott, Clare; Al Haddabi, Atheer; Akagi, Hiroko; Selby, Michelle; Cox, Diane; Lewith, George (June 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 4078780. PMID 24984956.
  18. Mihelicova, Martina; Siegel, Zachary; Evans, Meredyth; Brown, Abigail; Jason, Leonard (December 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 4675701. PMID 26063209.
  19. Pendergrast, Tricia; Brown, Abigail; Sunnquist, Madison; Jantke, Rachel; Newton, Julia L; Strand, Elin Bolle; Jason, Leonard A (December 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 5464362. 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 October 20, 2018. Cite has empty unknown parameter: |dead-url= (help)
  21. 21.0 21.1 Strassheim, Victoria; Lambson, Rebecca; Hackett, Katie L.; Newton, Julia L. (June 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. 22.0 22.1 Rowe, Peter C.; Marden, Colleen L.; Heinlein, Scott; Edwards, Charles C. (February 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 5796598. PMID 29391028.
  23. https://www.mdpi.com/journal/healthcare/special_issues/me_cfs_issue?
  24. Bassett, Jodi (June 2012). "The comprehensive M.E. symptom list" (PDF). The Hummingbirds' Foundation for M.E. (HFME). Retrieved December 12, 2018. Cite has empty unknown parameter: |dead-url= (help)
  25. The Grace Charity for M.E.; 25% ME Group (January 2019). "KNOWLEDGE IN THE HOPE OF PROTECTING M.E. SUFFERERS FROM UNNECESSARY SECTIONING". Retrieved July 12, 2019. Cite has empty unknown parameter: |dead-url= (help)
  26. Pates, Andrew (November 14, 2014). "My life stopped..." (PDF). actionforme.org.uk. Action for ME. Cite has empty unknown parameter: |dead-url= (help)
  27. "Symptoms - 25% M.E. Group". 25% M.E. Group. Retrieved October 20, 2018.
  28. Crowhurst, Greg (2005). "Supporting people with severe myalgic encephalomyelitis" (PDF). me-foreningen.dk. Nursing Standard – via Art and Science Chronic Illness. Cite has empty unknown parameter: |dead-url= (help)
  29. Rolfe, Brooke (October 16, 2018). "Woman, 33, has been living on a dementia ward for FIVE years". Mail Online. Retrieved October 17, 2018. Cite has empty unknown parameter: |dead-url= (help)
  30. The Caged Bird (2016). "ME Awareness May 2016". YouTube. Let's Do It for ME. Retrieved January 28, 2019. Cite has empty unknown parameter: |dead-url= (help)