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Severe and very severe ME
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[[File:Linda Crowhurst.JPG|300x300px|thumb|[[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 ''[https://www.youtube.com/watch?v=Z1z5O_cgQ7I Wasteland]'' which delicately documents Linda's very severe ME]] '''Severe and very severe ME''' affects about 25% of people with [[myalgic encephalomyelitis|myalgic encephalo­myelitis]] (ME), with patients being housebound or bedbound at some point in their illness,<ref name="IOM2015">{{Cite book | url =https://www.ncbi.nlm.nih.gov/books/NBK284903/ | title = Beyond myalgic encephalomyelitis/chronic fatigue syndrome: redefining an illness | last = ((Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome;Board on the Health of Select Populations; Institute of Medicine (U.S.))) | first = |publisher=National Academies Press|others=| year = 2015 |isbn=9780309316903|location=Washington, D.C.|oclc=906233426|editor-link=|chapter=|quote= | page = 32}}</ref> 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.<ref name="severeME-25">{{Cite web|url=https://25megroup.org/me | title = Severe M.E.|website=25% M.E. Group|language=en|access-date=2022-03-17}}</ref> Some people have died of severe ME, including [[Emily Collingridge]], [[Merryn Crofts]], [[Sophia Mirza]].<ref name="Guardian30Mar2012"/><ref name="Vindication"/><ref name="suicidality2021">{{Cite journal | last = Chu | first = Lily | authorlink = Lily Chu | last2 = Elliott | first2 = Meghan | authorlink2 = | last3 = Stein | first3 = Eleanor | authorlink3 = Eleanor Stein | last4 = Jason | first4 = Leonard A. | authorlink4 = Leonard Jason | title = Managing Suicidality in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8227525/|journal=Healthcare|volume=9|issue=6 | pages = 629|doi=10.3390/healthcare9060629|issn=2227-9032|pmc=PMC8227525|pmid=34070367 | date = 2021 | quote=|via=}}</ref> ==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.<ref name="ICC2011primer">{{Cite journal | last = Carruthers | first=Bruce M. | author-link = Bruce Carruthers | last2 = van de Sande | first2 = Marjorie I. | authorlink2 = Marjorie van de Sande | last3 = De Meirleir | first3 = Kenny L. | authorlink3 = Kenny De Meirleir | last4 = Klimas | first4 = Nancy G. | author-link4 = Nancy Klimas | last5 = Broderick | first5 = Gordon | author-link5 = Gordon Broderick | last6 = Mitchell | first6 = Terry | authorlink6 = Terry Mitchell | last7 = Staines | first7 = Donald | author-link7 = Donald Staines | last8 = Powles | first8 = A.C. Peter | author-link8 = A C Peter Powles | last9 = Speight | first9 = Nigel | authorlink9 = Nigel Speight | last10 = Vallings | first10 = Rosamund | authorlink10 = Rosamund Vallings | last11 = Bateman | first11 = Lucinda | authorlink11 = Lucinda Bateman | last12 = Baumgarten-Austrheim | first12 = Barbara | authorlink12 = Barbara Baumgarten-Austrheim | last13 = Bell | first13 = David | author-link13 = David Bell | last14 = Carlo-Stella | first14 = Nicoletta | author-link14 = Nicoletta Carlo-Stella | last15 = Chia | first15 = John | author-link15 = John Chia | last16 = Darragh | first16 = Austin | author-link16 = Austin Darragh | last17 = Jo | first17 = Daehyun | author-link17 = Daehyun Jo | last18 = Lewis | first18 = Donald | author-link18 = Donald Lewis | last19 = Light | first19 = Alan | author-link19 = Alan Light | last20 = Marshall-Gradisnik | first20 = Sonya | author-link20 = Sonya Marshall-Gradisnik | last21 = Mena | first21 = Ismael | author-link21 = Ismael Mena | last22 = Mikovits | first22 = Judy | author-link22 = Judy Mikovits | last23 = Miwa | first23 = Kunihisa | author-link23 = Kunihisa Miwa | last24 = Murovska | first24 = Modra | author-link24 = Modra Murovska | last25 = Pall | first25 = Martin | author-link25 = Martin Pall | last26 = Stevens | first26 = Staci | author-link26 = Staci Stevens | date = 2011-08-22 | title=Myalgic encephalomyelitis: International Consensus Criteria|url=https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2796.2011.02428.x|journal=Journal of Internal Medicine|language=en|volume=270|issue=4|pages=327–338|doi=10.1111/j.1365-2796.2011.02428.x|issn=0954-6820|pmc=3427890|pmid=21777306|via=}}</ref><ref name="NBK284903">{{Cite book | url =https://www.ncbi.nlm.nih.gov/books/NBK284903/|chapter=Questionnaires and Tools That May Be Useful for Assessing ME/CFS Symptoms | title = Beyond myalgic encephalomyelitis/chronic fatigue syndrome: redefining an illness | last = ((Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome;Board on the Health of Select Populations; Institute of Medicine (U.S.))) | first = |publisher=National Academies Press|others=| year = 2015 |isbn=9780309316903|location=Washington, D.C.|oclc=906233426|pages=|title-link=|access-date= | author-link = Institute of Medicine|quote=|archive-url=|archive-date=}}</ref> 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.<ref name="CBF2020" /> <embedvideo service="youtube" description="''Hope for a Better Moment'' by Linda Crowhurst. This video clearly documents Linda's [[neurological]] symptoms of her very severe ME" dimensions="400" alignment="right" container="frame">https://www.youtube-nocookie.com/watch?v=rVsOeZjhMFY&autoplay=0</embedvideo>{{clear}} ==Severe ME symptom scales== Substantial impairment and disability in adults can be measured using the following scales: * [[Energy Index Point Score]] * [http://fiqrinfo.ipage.com/FIQR%20FORM.pdf Fibromyalgia Impact Questionnaire Revised (FIQR)]<ref name="NBK284903" /> * Katz Index of Independence in Activities of Daily Living<ref>{{Cite web|url=https://consultgeri.org/try-this/general-assessment/issue-2.pdf | title = Katz Index of Independence in Activities of Daily Living (ADL) | last = Shelkey | first = Mary | last2 = Wallace | first2 = Meredith | date = 2012 | website = |archive-url=|archive-date=|url-status=|access-date= | author-link =| authorlink2 = }}</ref> * The Lawton Instrumental Activities of Daily Living (IADL) Scale<ref>{{Cite news | url=https://consultgeri.org/try-this/general-assessment/issue-23 | title = The Lawton Instrumental Activities of Daily Living (IADL) Scale {{!}} ConsultGeri Assessment Tool | last = Graf | first = Carla | date = 2015-11-23|work=ConsultGeri|access-date=2018-10-13|archive-url=|archive-date=|url-status=|language=en}}</ref> * [[Short Form 36-Item Health Survey|Short-Form 36 Item Health Survey]] which is not specific to ME/CFS * [https://www.rand.org/health/surveys_tools/mos/36-item-short-form.html RAND-36 - available as a free version of SF-36]<ref>{{Cite web|url=https://www.rand.org/health/surveys_tools/mos/36-item-short-form.html | title = 36-Item Short Form Survey from the RAND Medical Outcomes Study|website=rand.org|language=en|access-date=2018-10-13}}</ref> * [http://serene.me.uk/tests/wsas.pdf Work and Social Adjustment Scale]<ref>{{Cite web|url=http://serene.me.uk/tests/wsas.pdf | title = Work and Social Adjustment Scale | last = | first = | date = |website=serene.me|archive-url=|archive-date=|url-status=|access-date=}}</ref> (WSAS) ===Scales developed by patient organizations=== * [[HFME 3 Part ME Ability and Severity Scale|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]].<ref name="jason2011">{{Cite journal | last= Jason | first = Leonard A. | author-link = Leonard Jason | last2 = Evans | first2 = Meredyth | authorlink2 = Meredyth Evans | last3 = Brown | first3 = Molly | author-link3 = Molly Brown | last4 = Porter | first4 = Nicole | authorlink4 = Nicole Porter | last5 = Brown | first5 = Abigail | authorlink5 = Abigail Brown | last6 = Hunnell | first6 = Jessica | authorlink6 = Jessica Hunnell | last7 = Anderson | first7 = Valerie | authorlink7 = Valerie Anderson | last8 = Lerch | first8 = Athena | authorlink8 = Athena Lurch | date = 2011 | title=Fatigue Scales and Chronic Fatigue Syndrome: Issues of Sensitivity and Specificity|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181109/|journal=Disability studies quarterly : DSQ|volume=31|issue=1|pages=|issn=1041-5718|pmc=3181109|pmid=21966179|quote=|via=}}</ref> 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.<ref name="northeast" /><br style="clear:both;line-height:0;margin:0"> [[File:Naomi Whittingham .png|300px|thumb|left|[[Naomi Whittingham]] lives in the [[United Kingdom|UK]] with a severe case of ME. Naomi became ill at [[Pediatric myalgic encephalomyelitis and chronic fatigue syndrome|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]]]] {{Clear|both}} ==<span id="verysevere">Very severe ME</span>== [[File:Merry Crofts sick.JPG|250px|thumb|right|[[Merryn Crofts]] was bedbound and unable to eat before she died of very severe ME.]] Merryn weighed six stone (84 lbs) and was just 21 years old when she died; her autopsy revealed [[Dorsal root ganglia|ganglia]] [[inflammation]]. It is suspected that in the later years of her illness Merryn also suffered from [[Ehlers-Danlos syndrome|EDS]] and [[Mast cell activation disorder|MCAD]]. Her death certificate was reported to be the second in the [[United Kingdom|UK]] to attribute a death to [[myalgic encephalomyelitis]] (M.E.).<ref name="Vindication">{{Cite news | publisher=BBC Radio 5 Live|url=https://www.bbc.co.uk/news/health-44969741 | title = 'Vindication' for woman who wanted ME on death certificate | first = Jim | last = Taylor| date = July 27, 2018}}</ref> 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.<br> A very severe ME patient's experience photo shows clear signs of [[muscle atrophy|muscle wasting]] and [[disability]] - but for the majority of patients it remains an [[invisible illness]]. [[File:Whitney.JPG|300px|thumb|[[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 [[Ronald Davis|Ron Davis]], a world-renowned geneticist who is working to solve his son's disease.]]<br> People with very severe ME are totally '''bedbound''' and unable to stand at all.<ref name="northeast" /><ref name="StrassheimLambson2017" /><br><br>Some people with very severe ME have improved over time, or after surgery from [[cervical spinal stenosis]].<ref name="cagedbird2016">{{Cite web|url=https://www.youtube.com/watch?v=ZzUo0v5lf9c | title = ME Awareness May 2016 | last = The Caged Bird | first= | author-link =| date = 2016 | website = YouTube|publisher=[[Let's Do It for ME]]|archive-url=|archive-date=|url-status=|access-date=2019-01-28}}</ref><ref name="Rowe2018" /> {{clear}} ==Notable studies== * 2021, Back to the Future? Immunoglobulin Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<ref name="Brownlie2021">{{Cite journal | title = Back to the Future? Immunoglobulin Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2021-11-12|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8623195|journal=Healthcare|volume=9|issue=11|pages=1546 | last = Brownlie | first = Helen | authorlink = | last2 = Speight | first2 = Nigel | author-link2 = Nigel Speight|doi=10.3390/healthcare9111546|pmc=PMC8623195|pmid=34828592|access-date=|issn=2227-9032|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8623195 (Full text)] ::IV Immunoglobulin G may be effective for some with severe ME *2021, Life-Threatening Malnutrition in Very Severe ME/CFS<ref name="malnutrition2021">{{Cite journal | last = Baxter | first=Helen | authorlink = | last2 = Speight | first2 = Nigel | author-link2 = Nigel Speight | last3 = Weir | first3 = William | authorlink3 = William Weir| date = Apr 2021 | title = Life-Threatening Malnutrition in Very Severe ME/CFS|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8070213|journal=Healthcare|language=en|volume=9|issue=4 | pages = 459|doi=10.3390/healthcare9040459|pmc=PMC8070213|pmid=33919671|access-date=|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8070213 (Full text)] *2021, Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<ref name="Montoya2021">{{Cite journal | title = Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2021-10-06|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8544443|journal=Healthcare|volume=9|issue=10|pages=1331 | last = Montoya | first=Jose | authorlink = Jose Montoya | last2 = Dowell | first2 = Theresa | author-link2 = | last3 = Mooney | first3 = Amy | author-link3 = | last4 = Dimmock | first4 = Mary | author-link4 = Mary Dimmock | last5 = Chu | first5 = Lily | authorlink5 = Lily Chu|doi=10.3390/healthcare9101331|pmc=PMC8544443|pmid=34683011|access-date=|issn=2227-9032|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8544443 (Full text)] * 2021, Comprehensive Examination of Severely Ill ME/CFS Patients<ref name="Chang2021-Ex">{{Cite journal | last = Chang | first = Chia-Jung | authorlink = | last2 = Hung | first2 = Li-Yuan | authorlink2 = | last3 = Kogelnik | first3 = Andreas M. | authorlink3 = Andreas Kogelnik | last4 = Kaufman | first4 = David | author-link4 = David Kaufman | last5 = Aiyar | first5 = Raeka S. | authorlink5 = | last6 = Chu | first6 = Angela M. | authorlink6 = | last7 = Wilhelmy | first7 = Julie | last8 = Li | first8 = Peng | last9 = Tannenbaum | first9 = Linda | date = Oct 2021 | title = A Comprehensive Examination of Severely Ill ME/CFS Patients|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8535418|journal=Healthcare|language=en|volume=9|issue=10|pages=1290|doi=10.3390/healthcare9101290|pmc=PMC8535418|pmid=34682970|access-date=|quote=|via= | authorlink9 = Linda Tannenbaum | authorlink7 = Julie Wilhelmy}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8535418 (Full text)] * 2021, The Impact of Severe ME/CFS on Student Learning and K–12 Educational Limitations<ref name="Newton2021">{{Cite journal | last = Newton | first = Faith R. | author-link = | date = Jun 2021 | title = The Impact of Severe ME/CFS on Student Learning and K–12 Educational Limitations|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8225090|journal=Healthcare|language=en|volume=9|issue=6 | pages = 627|doi=10.3390/healthcare9060627|pmc=PMC8225090|pmid=34070286|access-date=|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8225090 (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<ref name="Fennell2021">{{Cite journal | title = Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected| date = 2021-05-09|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8150911|journal=Healthcare (Basel, Switzerland)|volume=9|issue=5|pages=553 | last = Fennell | first = Patricia A. | author-link = Patricia Fennell | last2 = Dorr | first2 = Nancy | author-link2 = | last3 = George | first3 = Shane S. | authorlink3 = |doi=10.3390/healthcare9050553|pmc=PMC8150911|pmid=34065069|access-date=|issn=2227-9032|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8150911 (Full text)] *2021, CFS patients remain severely disabled after specialist treatment with CBT in the UK<ref name="Vink2021-CBT">{{Cite journal | title = CFS patients remain severely disabled after specialist treatment with CBT in the UK| date = 2021-05-27|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8212546|journal=Journal of the Royal Society of Medicine|volume=114|issue=6|pages=284–284 | last = Vink | first = Mark | authorlink = Mark Vink | last2 = Vink-Niese | first2 = Alexandra | author-link2 = |doi=10.1177/01410768211013447|pmc=PMC8212546|pmid=34042529|access-date=|issn=0141-0768|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8212546 (Full text)] *2021, Systematic Review of Sleep Characteristics in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<ref name="Maksoud2021">{{Cite journal | last = Maksoud | first = Rebekah | authorlink = | last2 = Eaton-Fitch | first2 = Natalie | authorlink2 = Natalie Eaton-Fitch | last3 = Matula | first3 = Michael | authorlink3 = | last4 = Cabanas | first4 = Hélène | authorlink4 = Hélène Cabanas | last5 = Staines | first5 = Donald | authorlink5 = Donald Staines | last6 = Marshall-Gradisnik | first6 = Sonya | authorlink6 = Sonya Marshall-Gradisnik| date = May 2021 | title = Systematic Review of Sleep Characteristics in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|url=https://www.ncbi.nlm.nih.gov/pmc/articles/pmc8150292/|journal=Healthcare|language=en|volume=9|issue=5|pages=568|doi=10.3390/healthcare9050568|pmc=PMC8150292|pmid=34065013|access-date=|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/pmc8150292/ (Full text)] *2021, Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis<ref name="Strassheim2021">{{Cite journal | title = Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis| date = 2021-02-05|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7914910/|journal=Healthcare|volume=9|issue=2|pages=168 | last = Strassheim | first = Victoria | authorlink = Victoria Strassheim | last2 = Newton | first2 = Julia L. | authorlink2 = Julia Newton | last3 = Collins | first3 = Tracy | author-link3 = |doi=10.3390/healthcare9020168|pmc=7914910|pmid=33562474|access-date=|issn=2227-9032|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7914910/ (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<ref name="Campen2020-mms">{{Cite journal | title = 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 | date = 2020-06-30|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7551790|journal=Healthcare|volume=8|issue=3|pages=192 | last = van Campen | first = C (Linda) M.C. | authorlink = Linda van Campen | last2 = Rowe | first2 = Peter C. | authorlink2 = Peter Rowe | last3 = Visser | first3 = Frans C. | authorlink3 = Frans Visser|doi=10.3390/healthcare8030192|pmc=PMC7551790|pmid=32629923|access-date=|issn=2227-9032|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7551790 (Full text)] * 2020, Severe ME in children<ref name="Speight2020">{{Cite journal | last = Speight | first = Nigel | authorlink = Nigel Speight | date = Sep 2020 | title = Severe ME in Children|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7551866|journal=Healthcare|language=en|volume=8|issue=3|pages=211|doi=10.3390/healthcare8030211|pmc=PMC7551866|pmid=32674263|access-date=|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7551866/ (Full text)] *2020, Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients<ref name="SittingvanCampen2020">{{Cite journal | last = van Campen | first = C. (Linda) MC | authorlink = Linda van Campen | last2 = Rowe | first2 = Peter C. | authorlink2 = Peter Rowe | last3 = Visser | first3 = Frans C. | authorlink3 = Frans Visser| date = 2020-10-12 | title = Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7712289|journal=Healthcare|language=en|volume=8|issue=4|pages=394|doi=10.3390/healthcare8040394|pmc=PMC7712289|pmid=33050553|access-date=|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7712289 (Full text)] *2020, Cardiac Dimensions and Function are Not Altered among Females with the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<ref name="Iversen2021">{{Cite journal | last = Iversen | first=Per Ole | authorlink = | last2 = Lueder | first2 = Thomas Gero von | authorlink2 = | last3 = Kardel | first3 = Kristin Reimers | authorlink3 = | last4 = Lien | first4 = Katarina | author-link4 = | date = Dec 2020 | title = Cardiac Dimensions and Function are Not Altered among Females with the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7712104|journal=Healthcare|language=en|volume=8|issue=4 | pages = 406|doi=10.3390/healthcare8040406|pmc=PMC7712104|pmid=33081294|access-date=|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7712104 (Full text)] *2020, The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<ref name="Boulazreg2021">{{Cite journal | last = Boulazreg | first = Samir | authorlink = | last2 = Rokach | first2 = Ami | author-link2 = | date = Dec 2020 | title = The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7711762|journal=Healthcare|language=en|volume=8|issue=4 | pages = 413|doi=10.3390/healthcare8040413|pmc=PMC7711762|pmid=33092097|access-date=|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7711762 (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<ref>{{Cite journal | last = van Campen | first = C. (Linda) M.C. | authorlink = Linda van Campen | last2 = Rowe | first2 = Peter C. | authorlink2 = Peter Rowe | last3 = Visser | first3 = Frans C. | authorlink3 = Frans Visser| date = Sep 2020 | title = 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|url=https://www.ncbi.nlm.nih.gov/pmc/articles/pmc7551321/|journal=Healthcare|language=en|volume=8|issue=3|pages=273|doi=10.3390/healthcare8030273|pmc=PMC7551321|pmid=32823979|access-date=|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/pmc7551321/ (Full text)] *2021, Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS<ref name="Kingdon2020">{{Cite journal | last = Kingdon | first = Caroline | authorlink = Caroline Kingdon | last2 = Giotas | first2 = Dionysius | authorlink2 = Dionysius Giotas | last3 = Nacul | first3 = Luis | authorlink3 = Luis Nacul | last4 = Lacerda | first4 = Eliana | author-link4 = Eliana Lacerda | date = Sep 2020 | title = Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7551603|journal=Healthcare|language=en|volume=8|issue=3|pages=197|doi=10.3390/healthcare8030197|pmc=PMC7551603|pmid=32635535|access-date=|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7551603 (Full text)] *2021, Homebound versus Homebound versus Bedridden Status among Those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<ref name="Conroy2021">{{Cite journal | last = Conroy | first = Karl | authorlink = | last2 = Bhatia | first2 = Shaun | authorlink2 = | last3 = Islam | first3 = Mohammed | authorlink3 = | last4 = Jason | first4 = Leonard A. | authorlink4 = Leonard Jason | date = Feb 2021 | title = Homebound versus Bedridden Status among Those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7909520|journal=Healthcare|language=en|volume=9|issue=2|pages=106|doi=10.3390/healthcare9020106|pmc=PMC7909520|pmid=33498489|access-date=|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7909520 (Full text)] *2021, Three Cases of Severe ME/CFS in Adults<ref name="Williams2021">{{Cite journal | last = Williams | first = Leah R. | author-link = | last2 = Isaacson-Barash | first2 = Carol | author-link2 = | date = Feb 2021 | title = Three Cases of Severe ME/CFS in Adults|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7920463|journal=Healthcare|language=en|volume=9|issue=2|pages=215|doi=10.3390/healthcare9020215|pmc=PMC7920463|pmid=33669438|access-date=|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7920463 (Full text)] *2021, Extremely Severe ME/CFS—A Personal Account<ref name="Dafoe2021">{{Cite journal | last = Dafoe | first = Whitney | authorlink = Whitney Dafoe | date = May 2021 | title = Extremely Severe ME/CFS—A Personal Account|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8145314|journal=Healthcare|language=en|volume=9|issue=5|pages=504|doi=10.3390/healthcare9050504|pmc=PMC8145314|pmid=33925566|access-date=|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8145314 (Full text)] * 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<ref name="CBF2020">{{Cite journal | last = van Campen | first = C. (Linda) M.C. | authorlink = Linda van Campen | last2 = Rowe | first2 = Peter C. | authorlink2 = Peter Rowe | last3 = Visser | first3 = Frans C. | authorlink3 = Frans Visser| date = Jun 2020 | title = 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 | url =https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7349207|journal=Healthcare|language=en|volume=8|issue=2|pages=169|doi=10.3390/healthcare8020169|pmc=PMC7349207|pmid=32545797|access-date=|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7349207 (Full text)] * 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">{{Cite web|url=https://www.mdpi.com/journal/healthcare/special_issues/me_cfs_issue | title = Special Issue: ME/CFS ― The Severely and Very Severely Affected | last = Healthcare | first = | author-link =| date = 2021 | website = Healthcare|language=en|archive-url=|archive-date=|url-status=|access-date=2021-02-19}}</ref> *2020, The effect of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) severity on cellular bioenergetic function<ref name="Tomas2020">{{Cite journal | last = Tomas | first = Cara | authorlink = Cara Tomas | first2 = Joanna L. | last2 = Elson | authorlink2 = Joanna Elson | last3 = Newton | first3 = Julia L. | authorlink3 = Julia Newton | last4 = Strassheim | first4 = Victoria | author-link4 = Victoria Strassheim | last5 = Walker | first5 = Mark | authorlink5 = Mark Walker| date = 2020-04-10 | title = The effect of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) severity on cellular bioenergetic function|url=https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0231136 |journal=PLoS ONE |language=en|volume=15|issue=4| pages = e0231136|doi=10.1371/journal.pone.0231136|issn=|quote=|via=}}</ref> - [https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0231136 (Full text)] * 2018, Improvement of severe ME/CFS symptoms following surgical treatment of cervical spinal stenosis<ref name="Rowe2018">{{Cite journal | last = Rowe | first = Peter C. | author-link = Peter Rowe | last2 = Marden | first2 = Colleen L. | authorlink2 = Colleen Marden | last3 = Heinlein | first3 = Scott | author-link3 = Scott Heinlein | last4 = Edwards | first4 = Charles C. | authorlink4 = Charles Edwards | authorlink5 = | date = 2018-02-02 | title = Improvement of severe myalgic encephalomyelitis/chronic fatigue syndrome symptoms following surgical treatment of cervical spinal stenosis|url=https://www.ncbi.nlm.nih.gov/pmc/articles/5796598|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> - [https://link.springer.com/article/10.1186/s12967-018-1397-7 (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.<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=|url-status=|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> - [https://link.springer.com/article/10.1186/s12967-018-1397-7 (Full text)] * 2017, What is known about severe and very severe chronic fatigue syndrome: A scoping review<ref name="StrassheimLambson2017">{{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 | authorlink2 = Rebecca Lambson | authorlink3 = Katie Hackett | author-link4 = Julia Newton | authorlink5 = |via=}}</ref> - [https://www.tandfonline.com/doi/full/10.1080/21641846.2017.1333185 (Full text)] * 2017, Understanding severely affected chronic fatigue syndrome: CFS the gravity of the situation<ref name="Strassheim2017a">{{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|language=en|archive-url=|archive-date=|url-status=|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> - [https://www.tandfonline.com/doi/full/10.1080/10833196.2017.1327131 (Full text)] *2016, Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome<ref name="Pendergrast2016">{{Cite journal | last = Pendergrast | first=Tricia | authorlink = Tricia Pendergrast | last2 = Brown | first2 = Abigail | author-link2 = Abigail Brown | last3 = Sunnquist | first3 = Madison | authorlink3 = Madison Sunnquist | last4 = Jantke | first4 = Rachel | author-link4 = Rachel Jantke | last5 = Newton | first5 = Julia L | authorlink5 = Julia Newton | last6 = Strand | first6 = Elin Bolle | authorlink6 = Elin Strand | last7 = Jason | first7 = Leonard A | authorlink7 = 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> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464362/ (Full text)] * 2016, Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents' Experiences<ref name="Mihelicova2016">{{Cite journal | last = Mihelicova | first = Martina | authorlink = Martina Mihelicova | last2 = Siegel | first2 = Zachary | author-link2 = Zachary Siegel | last3 = Evans | first3 = Meredyth | authorlink3 = Meredyth Evans | last4 = Brown | first4 = Abigail | author-link4 = Abigail Brown | last5 = Jason | first5 = Leonard | authorlink5 = Leonard Jason | date = Dec 2016 | title = Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents' Experiences|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4675701/|journal=Journal of health psychology|volume=21|issue=12|pages=2824–2837|doi=10.1177/1359105315587137|issn=1359-1053|pmc=4675701|pmid=26063209|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4675701/ (Full text)] *2014, What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise<ref name="McDermott2014">{{Cite journal | last = McDermott | first = Clare | authorlink = | last2 = Al Haddabi | first2 = Atheer | authorlink2 = | last3 = Akagi | first3 = Hiroko | authorlink3 = | last4 = Selby | first4 = Michelle | authorlink4 = | last5 = Cox | first5 = Diane | authorlink5 = Diane Cox | last6 = Lewith | first6 = George | authorlink6 = | date = 2014-06-19 | title = What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4078780/|journal=BMJ Open|volume=4|issue=6|pages=292-307|doi=10.1136/bmjopen-2014-005083|issn=2044-6055|pmc=4078780|pmid=24984956|access-date=|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4078780/ (Full text)] * 2010, Being homebound with chronic fatigue syndrome: a multidimensional comparison with outpatients<ref name="Wiborg2010">{{Cite journal | last = Wiborg | first = Jan F. | author-link = Jan Wiborg | last2 = van der Werf | first2 = Sieberen | authorlink2 = Sieberen van der Werf | last3 = Prins | first3 = Judith B. | authorlink3 = Judith Prins | last4 = Bleijenberg | first4 = Gijs | authorlink4 = Gijs Bleijenberg | authorlink5 = | date = May 2010 | title = Being homebound with chronic fatigue syndrome: A multidimensional comparison with outpatients|url=https://linkinghub.elsevier.com/retrieve/pii/S0165178110000569|journal=Psychiatry Research|volume=177|issue=1-2|pages=246–249|doi=10.1016/j.psychres.2010.02.010|issn=0165-1781|quote=|via=}}</ref> - [https://www.sciencedirect.com/science/article/pii/S0165178110000569?via%3Dihub (Full text)] *2009, Risk factors for severe ME/CFS<ref name="Pheby2009">{{Cite journal | last = Pheby | first = Derek | authorlink = Derek Pheby | last2 = Saffron | first2 = Lisa | author-link2 = | date = 2009 | title = Risk factors for severe ME/CFS|url=https://bucks.repository.guildhe.ac.uk/id/eprint/9823/|journal=Biology and Medicine|volume=1|issue=4|pages=50-74|doi=|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [https://www.researchgate.net/profile/Derek-Pheby/publication/285145361_Risk_factors_for_severe_MECFS/links/0912f511a913223cb6000000/Risk-factors-for-severe-ME-CFS.pdf (Full text)] * 2007, Severe Chronic Fatigue Syndrome: Recovery is possible<ref name="Burley2007">{{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 | last3 = Findley | first3 = Leslie | authorlink3 = Leslie Findley|journal=British Journal of Occupational Therapy|volume=70|issue=8 | date = Aug 1, 2007|pages=339-344|language=en|doi=10.1177/030802260707000803|archive-url=|archive-date=|url-status=|access-date=2019-02-11}}</ref> - [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 (Full text)] * 2000, The course of severe chronic fatigue syndrome in childhood<ref name="Rangel2001">{{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=|url-status=|access-date= | last3 = Levin | first3 = M | last4 = Roberts | first4 = H|doi=10.1177/014107680009300306|pmid=10741312|authorlink=Luiza Rangel | authorlink2 = Elena Garralda}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1297949/pdf/10741312.pdf (Full text)] * 2000, Severe and Very Severe Patients with chronic fatigue syndrome: perceived outcome following an inpatient programme<ref name="Cox2000">{{Cite journal | last = Cox | first=Diane L. | author-link = Diane Cox | authorlink2 = Leslie Findley | 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=}}</ref> - [https://www.tandfonline.com/doi/abs/10.1300/J092v07n03_04 (Full text)] ==News articles and interviews== * 2022, [https://eu.northjersey.com/story/news/health/2022/02/06/epstein-barr-chronic-fatigue-syndrome-montclair-nj/9291538002/ Epstein-Barr derails NJ man's life; he's pushing for better care: "Trapped in the dark: How chronic fatigue syndrome derailed a NJ musician's life"] * 2021, [https://eu.northjersey.com/story/news/health/2022/02/06/epstein-barr-chronic-fatigue-syndrome-montclair-nj/9291538002/ ME has left me bedbound for eight years – I feel forgotten by the world], North Jersey * 2020, [https://www.dailymail.co.uk/health/article-7886679/Three-patients-reveal-daily-struggle-crippling-condition.html Three ME patients reveal their daily struggle with the crippling condition], Daily Mail Online * 2020, [https://meassociation.org.uk/2020/08/how-it-feels-to-have-very-severe-m-e-by-ruth-braham/ How it feels to have Very Severe M.E.] by Ruth Braham, via The ME Association * 2020, [https://www.bbc.co.uk/news/uk-england-derbyshire-53648296 Kara Jane Spencer: Musicians help severely ill singer finish album], BBC News * 2019, [https://www.meaction.net/2019/07/24/uk-teenager-with-severe-me-threatened-with-forced-institutionalized/ UK Teenager with Severe ME Threatened with Forced Institutionalization], #MEAction Network” * 2019, [https://meassociation.org.uk/2019/08/severe-me-day-life-in-a-nursing-home-light-sensitivity-and-very-severe-m-e-by-eira-stuart-08-august-2019 Severe ME Day: Life in a Nursing Home, Light Sensitivity and Very Severe M.E.] by Eira Stuart, via The ME Association * 2018, [https://www.dailymail.co.uk/news/article-6281435/Woman-33-living-dementia-ward-FIVE-years.html Woman, 33, has been living in a dementia ward for FIVE years after falling ill with crippling condition], Daily Mail<ref name="DailyMailOct2018">{{Cite news | url=https://www.dailymail.co.uk/news/article-6281435/Woman-33-living-dementia-ward-FIVE-years.html | title = Woman, 33, has been living on a dementia ward for FIVE years | last = Rolfe | first = Brooke | date = Oct 16, 2018|work=Mail Online|access-date=2018-10-17|archive-url=|archive-date=|url-status=}}</ref> * 2018, [https://www.mirror.co.uk/news/real-life-stories/chronic-fatigue-syndrome-left-bedbound-13091318 "I can barely walk and I'm bed-bound 23 hours a day - M.E. nearly killed me"] - positive story of partial recovery from very severe ME by [[Jessica Taylor-Bearman]], Mirror Online * 2017, [https://www.thescottishsun.co.uk/news/1445538/singer-amanda-hendrie-me-battle/ Bed-bound singer living in silence opens up about how ME stripped her of her voice just weeks after her mum died], The Scottish Sun * February 27, 2012, [https://meassociation.org.uk/2012/02/tragic-tale-of-woman-with-chronic-fatigue-syndrome-too-tired-to-eat-derby-telegraph-27-february-2012/ Tragic tale of woman with chronic fatigue syndrome 'too tired' to eat], Derby Telegraph * 2012, [https://www.theguardian.com/commentisfree/2012/mar/30/me-emily-collingridge-chronic-fatigue-syndrome ME is often dismissed – but sufferers like Emily Collingridge], The Guardian<ref name="Guardian30Mar2012">{{Cite news | url=https://www.theguardian.com/commentisfree/2012/mar/30/me-emily-collingridge-chronic-fatigue-syndrome | title = ME is often dismissed – but sufferers like Emily Collingridge are dying | first = Scott Jordan | last = Harris|publisher=The Guardian | date = Mar 30, 2012|access-date=2022-03-17}}</ref> * 2010, [https://www.dailymail.co.uk/health/article-1093016/Ive-seen-patients-paralysed-dying-Aids-victims-starving-children--Ive-seen-ill-Lynn.html I've seen patients paralysed, dying Aids victims, starving children... but I've never seen anyone as ill as Lynn], Daily Mail ==Patient group surveys == * 2014, Severe M.E. Time to Deliver report by Action For ME<ref name="AfME2014">{{Cite web|url=https://www.actionforme.org.uk/uploads/pdfs/my-life-stopped-severe-ME-report.pdf | title = My life stopped... | last = Pates | first=Andrew| date = Nov 14, 2014 | website = [[Action for ME]]|archive-url=|archive-date=|url-status=|access-date=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464362/ (Full text)] ==See also== * [[HFME 3 Part ME Ability and Severity Scale|HFME 3 Part M.E. Ability and Severity Scale]] *[[List of deaths caused by myalgic encephalomyelitis or chronic fatigue syndrome]] * [[Myalgic encephalomyelitis]] * [[Rare and uncommon symptoms]] * [[:Category:Symptom scales|Symptom scales]] * [[Stigma]] * [[Causes of death]] * [[Medical neglect and abuse]] * [[Periodic paralysis]] ===Severe ME patient groups=== * [[25 Percent ME Group]] * [[The Hummingbirds' Foundation for ME|The Hummingbirds Foundation for M.E.]] ===People with Severe or Very Severe ME=== * [[Jodi Bassett]] (deceased) * [[Olaf Bodden]] Former professional soccer player<ref name="olaf">{{Cite news | url=https://www.welt.de/sport/gallery118782921/Benefizspiel-fuer-den-schwer-kranken-Olaf-Bodden.html | title = Benefizspiel für den schwer kranken Olaf Bodden | last = | first = | date = 2021 | language=de|website=Die Welt|archive-url=|archive-date=|url-status=|access-date=2021-11-17}}</ref> * [[Maeve Boothby-O'Neill]] (deceased) * [[Emily Collingridge]] (deceased) * [[Merryn Crofts]] (deceased) * [[Linda Crowhurst]] * [[Whitney Dafoe]] * [[Lynn Gilderdale]] (deceased) * [[Sophia Mirza]] (deceased) * [[Jessica Taylor-Bearman]] * [[Naomi Whittingham]] * [[Andrew Williams]] (deceased) ===Severe ME blogs and websites=== * [[A Life Hidden]] * [[Stonebird]] [[Greg Crowhurst|(Greg Crowhurst]] and [[Linda Crowhurst]]) ==Advocacy appeals == *[http://www.blogistan.co.uk/blog/mt.php/2011/05/28/me-awareness-emily-collingridges-appeal Emily Collingridge severe ME Appeal 2011] * [https://www.healthrising.org/blog/2021/07/12/we-are-failing-people-with-very-severe-me-cfs/ We are Failing People with Very Severe ME/CFS - Health Rising 2021] ==Learn more== * [https://www.hfme.org/PDF/Comprehensive_ME_Symptom_List.pdf Comprehensive list of M.E.Symptoms]<ref name="HFMEsymptoms">{{Cite web|url=https://www.hfme.org/PDF/Comprehensive_ME_Symptom_List.pdf | title = The comprehensive M.E. symptom list | last = Bassett | first=Jodi | date = Jun 2012 | website = The Hummingbirds' Foundation for M.E. (HFME)|publisher=|archive-url=|archive-date=|url-status=|access-date=2018-12-12|authorlink=Jodi Bassett}}</ref> - Hummingbirds' Foundation for M.E. * [https://25megroup.org/download/2527/ Knowledge in the Hope of Protecting M.E. Sufferers from Unnecessary Sectioning]<ref name="PreventUnnecessarySectioning">{{Cite web|url=https://25megroup.org/download/2527/ | title = Knowledge in the Hope of Protecting M.E. Sufferers from Unnecessary Sectioning | last2 = 25% ME Group | first2 = | authorlink2 = 25 Percent ME Group | last = The Grace Charity for M.E. | first= | authorlink = The Grace Charity for M.E. | date = Jan 2019 | website = |archive-url=|archive-date=|url-status=|access-date=2019-07-12}}</ref> - Preventing the unnecessary forced mental health sectioning of severely ill patients - [[The Grace Charity for M.E.]] with [[25 Percent ME Group|25% ME Group]] * [https://www.actionforme.org.uk/uploads/pdfs/my-life-stopped-severe-ME-report.pdf My life stopped - Severe M.E. report]<ref name="AfME2014"/> - Action for ME * [https://25megroup.org/me/symptoms Severe M.E. symptoms]<ref name="symptoms">{{Cite news | url=https://25megroup.org/me/symptoms | title = Symptoms - 25% M.E. Group|work=25% M.E. Group|access-date=2018-10-20|language=en-US}}</ref> - 25% ME Group * [http://me-foreningen.dk/wp-content/uploads/2016/10/Crowhurst-Severely-affected-i-Nursing-Standard.pdf Supporting people with severe Myalgic Encephalomyelitis]<ref name="Crowhurst2016">{{Cite web|url=http://me-foreningen.dk/wp-content/uploads/2016/10/Crowhurst-Severely-affected-i-Nursing-Standard.pdf | title = Supporting people with severe myalgic encephalomyelitis | last = Crowhurst | first=Greg | authorlink = Greg Crowhurst | date = 2005|publisher=Nursing Standard|website=ME Foreningen|archive-url=|archive-date=|url-status=|access-date=}}</ref> - Greg Crowhurst ==References== {{Reflist}} [[Category:Definitions]]
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