Severe and very severe ME: Difference between revisions

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* 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|author-link2=Rebecca Lambson|author-link3=Katie Hackett|author-link4=Julia Newton|author-link5=|via=}}</ref> - [https://www.tandfonline.com/doi/full/10.1080/21641846.2017.1333185 (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|author-link2=Rebecca Lambson|author-link3=Katie Hackett|author-link4=Julia Newton|author-link5=|via=}}</ref> - [https://www.tandfonline.com/doi/full/10.1080/21641846.2017.1333185 (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)]
* 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)]
* 2018, 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> - [https://link.springer.com/article/10.1186/s12967-018-1397-7 (Full text)]
* 2018, 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://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)]


*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|author-link=Cara Tomas|first2=Joanna L.|last2=Elson|author-link2=Joanna Elson|last3=Newton|first3=Julia L.|author-link3=Julia Newton|last4=Strassheim|first4=Victoria|author-link4=Victoria Strassheim|last5=Walker|first5=Mark|author-link5=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)]
*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|author-link=Cara Tomas|first2=Joanna L.|last2=Elson|author-link2=Joanna Elson|last3=Newton|first3=Julia L.|author-link3=Julia Newton|last4=Strassheim|first4=Victoria|author-link4=Victoria Strassheim|last5=Walker|first5=Mark|author-link5=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)]
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* 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=|authorlink=|date=2021|website=Healthcare|language=en|archive-url=|archive-date=|url-status=|access-date=2021-02-19}}</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">{{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=|authorlink=|date=2021|website=Healthcare|language=en|archive-url=|archive-date=|url-status=|access-date=2021-02-19}}</ref>


* 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.|author-link=Linda van Campen|last2=Rowe|first2=Peter C.|author-link2=Peter Rowe|last3=Visser|first3=Frans C.|author-link3=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.mdpi.com/2227-9032/8/2/169/htm|journal=Healthcare|language=en|volume=8|issue=2|pages=169|doi=10.3390/healthcare8020169|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [https://www.mdpi.com/2227-9032/8/2/169/htm (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.|author-link=Linda van Campen|last2=Rowe|first2=Peter C.|author-link2=Peter Rowe|last3=Visser|first3=Frans C.|author-link3=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, 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.|author-link=Linda van Campen|last2=Rowe|first2=Peter C.|author-link2=Peter Rowe|last3=Visser|first3=Frans C.|author-link3=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.mdpi.com/2227-9032/8/3/273/htm|journal=Healthcare|language=en|volume=8|issue=3|pages=273|doi=10.3390/healthcare8030273|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [https://www.mdpi.com/2227-9032/8/3/273/htm (Full text)]
*2021, Extremely Severe ME/CFS—A Personal Account<ref name="Dafoe2021">{{Cite journal|last=Dafoe|first=Whitney|author-link=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)]
*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, Homebound versus Homebound versus Bedridden Status among Those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<ref name="Conroy2021">{{Cite journal|last=Conroy|first=Karl|author-link=|last2=Bhatia|first2=Shaun|author-link2=|last3=Islam|first3=Mohammed|author-link3=|last4=Jason|first4=Leonard A.|author-link4=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, Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS<ref name="Kingdon2020">{{Cite journal|last=Kingdon|first=Caroline|author-link=Caroline Kingdon|last2=Giotas|first2=Dionysius|author-link2=Dionysius Giotas|last3=Nacul|first3=Luis|author-link3=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)]
* 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.|author-link=Linda van Campen|last2=Rowe|first2=Peter C.|author-link2=Peter Rowe|last3=Visser|first3=Frans C.|author-link3=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)]
*2020, The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<ref name="Boulazreg2021">{{Cite journal|last=Boulazreg|first=Samir|author-link=|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, 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|author-link=|last2=Lueder|first2=Thomas Gero von|author-link2=|last3=Kardel|first3=Kristin Reimers|author-link3=|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, 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|author-link=Linda van Campen|last2=Rowe|first2=Peter C.|author-link2=Peter Rowe|last3=Visser|first3=Frans C.|author-link3=Frans Visser
*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|author-link=Linda van Campen|last2=Rowe|first2=Peter C.|author-link2=Peter Rowe|last3=Visser|first3=Frans C.|author-link3=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.mdpi.com/2227-9032/8/4/394/htm|journal=Healthcare|language=en|volume=8|issue=4|pages=394|doi=10.3390/healthcare8040394|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [https://www.mdpi.com/2227-9032/8/4/394/htm (Full text)]
|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, Severe ME in children<ref>{{Cite journal|last=Speight|first=Nigel|author-link=Nigel Speight|date=Sep 2020|title=Severe ME in Children|url=https://www.mdpi.com/2227-9032/8/3/211/htm|journal=Healthcare|language=en|volume=8|issue=3|pages=211|doi=10.3390/healthcare8030211|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [https://doi.org/10.3390/healthcare8030211/htm (Full text)]
* 2020, Severe ME in children<ref>{{Cite journal|last=Speight|first=Nigel|author-link=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, 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://doi.org/10.3390/healthcare8030192|journal=Healthcare|volume=8|issue=3|pages=192|last=van Campen|first=C (Linda) M. C.|author-link=Linda van Campen|last2=Rowe|first2=Peter C.|author-link2=Peter Rowe|last3=Visser|first3=Frans C.|author-link3=Frans Visser|doi=10.3390/healthcare8030192|pmc=PMC7551790|pmid=32629923|access-date=|issn=2227-9032|quote=|via=}}</ref> - [https://doi.org/10.3390/healthcare8030192 (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.|author-link=Linda van Campen|last2=Rowe|first2=Peter C.|author-link2=Peter Rowe|last3=Visser|first3=Frans C.|author-link3=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)]
*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|author-link=Victoria Strassheim|last2=Newton|first2=Julia L.|author-link2=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)]
*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|author-link=Victoria Strassheim|last2=Newton|first2=Julia L.|author-link2=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)]
*2021, Systematic Review of Sleep Characteristics in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<ref name="Maksoud2021">{{Cite journal|last=Maksoud|first=Rebekah|author-link=|last2=Eaton-Fitch|first2=Natalie|author-link2=|last3=Matula|first3=Michael|author-link3=|last4=Cabanas|first4=Hélène|author-link4=Hélène Cabanas|last5=Staines|first5=Donald|author-link5=Donald Staines|last6=Marshall-Gradisnik|first6=Sonya|author-link6=Sonya Marshall-Gradisnik|date=May 2021|title=Systematic Review of Sleep Characteristics in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|url=https://www.mdpi.com/2227-9032/9/5/568/htm|journal=Healthcare|language=en|volume=9|issue=5|pages=568|doi=10.3390/healthcare9050568|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [https://www.mdpi.com/2227-9032/9/5/568/htm (Full text)]
*2021, Systematic Review of Sleep Characteristics in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<ref name="Maksoud2021">{{Cite journal|last=Maksoud|first=Rebekah|author-link=|last2=Eaton-Fitch|first2=Natalie|author-link2=|last3=Matula|first3=Michael|author-link3=|last4=Cabanas|first4=Hélène|author-link4=Hélène Cabanas|last5=Staines|first5=Donald|author-link5=Donald Staines|last6=Marshall-Gradisnik|first6=Sonya|author-link6=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, 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://dx.doi.org/10.1177/01410768211013447|journal=Journal of the Royal Society of Medicine|volume=114|issue=6|pages=284–284|last=Vink|first=Mark|author-link=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.researchgate.net/profile/Mark-Vink-2/publication/351914009_CFS_patients_remain_severely_disabled_after_specialist_treatment_with_CBT_in_the_UK/links/60afa16c458515bfb0aaebdf/CFS-patients-remain-severely-disabled-after-specialist-treatment-with-CBT-in-the-UK.pdf (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|author-link=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, 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://pubmed.ncbi.nlm.nih.gov/34065069/|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.|author-link3=|doi=10.3390/healthcare9050553|pmc=8150911|pmid=34065069|access-date=|issn=2227-9032|quote=|via=}}</ref> - [https://www.mdpi.com/1101812 (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.|author-link3=|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, Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<ref>{{Cite journal|title=Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|date=2021-10-06|url=https://doi.org/10.3390/healthcare9101331|journal=Healthcare|volume=9|issue=10|pages=1331|last=Montoya|first=Jose|author-link=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|author-link5=Lily Chu|doi=10.3390/healthcare9101331|pmc=PMC8544443|pmid=34683011|access-date=|issn=2227-9032|quote=|via=}}</ref> - [https://doi.org/10.3390/healthcare9101331 (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, Life-Threatening Malnutrition in Very Severe ME/CFS<ref name="malnutrition2021">{{Cite journal|last=Baxter|first=Helen|author-link=|last2=Speight|first2=Nigel|author-link2=Nigel Speight|last3=Weir|first3=William|author-link3=William Weir|date=Apr 2021|title=Life-Threatening Malnutrition in Very Severe ME/CFS|url=https://www.mdpi.com/2227-9032/9/4/459/htm|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.mdpi.com/2227-9032/9/4/459/htm (Full text)]
* 2021, Comprehensive Examination of Severely Ill ME/CFS Patients<ref name="Chang2021-Ex">{{Cite journal|last=Chang|first=Chia-Jung|author-link=|last2=Hung|first2=Li-Yuan|author-link2=|last3=Kogelnik|first3=Andreas M.|author-link3=Andreas Kogelnik|last4=Kaufman|first4=David|author-link4=David Kaufman|last5=Aiyar|first5=Raeka S.|author-link5=|last6=Chu|first6=Angela M.|author-link6=|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=|author-link9=Linda Tannenbaum|author-link7=Julie Wilhelmy}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8535418 (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|author-link=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|author-link5=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, Life-Threatening Malnutrition in Very Severe ME/CFS<ref name="malnutrition2021">{{Cite journal|last=Baxter|first=Helen|author-link=|last2=Speight|first2=Nigel|author-link2=Nigel Speight|last3=Weir|first3=William|author-link3=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, Back to the Future? Immunoglobulin Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<ref name="Brownlie2021"></ref> - [ (Full text)] 1546 https://doi.org/10.3390/healthcare9111546 - 12 Nov 2021


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

Revision as of 12:36, January 16, 2022

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.

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.[5]

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]

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.[10]

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.[11]

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

Very severe ME[edit | edit source]

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 ganglia inflammation. It is suspected that in the later years of her illness Merryn also suffered from EDS and MCAD. Her death certificate was reported to be the second in the UK to attribute a death to myalgic encephalomyelitis (M.E.).[12]

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

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.[11] [13]

Some people with very severe ME have improved over time, or after surgery from cervical spinal stenosis.[14][15]

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[16] - (Full text)
  • 2000, The course of severe chronic fatigue syndrome in childhood[17] - (Full text)
  • 2007, Severe Chronic Fatigue Syndrome: Recovery is possible[18] - (Full text)
  • 2009, Risk factors for severe ME/CFS[19] - (Full text)
  • 2010, Being homebound with chronic fatigue syndrome: a multidimensional comparison with outpatients[20] - (Full text)
  • 2014, Severe M.E. Time to Deliver report[21] - (Full text)
  • 2014, What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise[22] - (Full text)
  • 2016, Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents' Experiences[23] - (Full text)
  • 2016, Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome[24] - (Full text)
  • 2017, Understanding severely affected chronic fatigue syndrome: CFS the gravity of the situation[25] - (Full text)
  • 2017, What is known about severe and very severe chronic fatigue syndrome: A scoping review[13] - (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.[11] - (Full text)
  • 2018, Improvement of severe ME/CFS symptoms following surgical treatment of cervical spinal stenosis[15] - (Full text)
  • 2020, The effect of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) severity on cellular bioenergetic function[26] - (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[5] - (Full text)
  • 2021, Extremely Severe ME/CFS—A Personal Account[28] - (Full text)
  • 2021, Three Cases of Severe ME/CFS in Adults[29] - (Full text)
  • 2021, Homebound versus Homebound versus Bedridden Status among Those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome[30] - (Full text)
  • 2021, Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS[31] - (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[32] - (Full text)
  • 2020, The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome[33] - (Full text)
  • 2020, Cardiac Dimensions and Function are Not Altered among Females with the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome[34] - (Full text)
  • 2020, Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients[35] - (Full text)
  • 2020, Severe ME in children[36] - (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[37] - (Full text)
  • 2021, Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis[38] - (Full text)
  • 2021, Systematic Review of Sleep Characteristics in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome[39] - (Full text)
  • 2021, CFS patients remain severely disabled after specialist treatment with CBT in the UK[40] - (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[41] - (Full text)
  • 2021, The Impact of Severe ME/CFS on Student Learning and K–12 Educational Limitations[42] - (Full text)
  • 2021, Comprehensive Examination of Severely Ill ME/CFS Patients[43] - (Full text)
  • 2021, Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome[44] - (Full text)
  • 2021, Life-Threatening Malnutrition in Very Severe ME/CFS[45] - (Full text)
  • 2021, Back to the Future? Immunoglobulin Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome[46] - [ (Full text)] 1546 https://doi.org/10.3390/healthcare9111546 - 12 Nov 2021

See also[edit | edit source]

Severe ME Advocacy groups[edit | edit source]

People with Severe or Very Severe ME[edit | edit source]

Severe ME blogs and websites[edit | edit source]

Learn more[edit | edit source]

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. 5.0 5.1 van Campen, C. (Linda) M. C.; Rowe, Peter C.; Visser, Frans C. (June 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". Healthcare. 8 (2): 169. doi:10.3390/healthcare8020169. PMC 7349207. PMID 32545797.
  6. Shelkey, Mary; Wallace, Meredith (2012). "Katz Index of Independence in Activities of Daily Living (ADL)" (PDF).
  7. Graf, Carla (November 23, 2015). "The Lawton Instrumental Activities of Daily Living (IADL) Scale | ConsultGeri Assessment Tool". ConsultGeri. Retrieved October 13, 2018.
  8. "36-Item Short Form Survey from the RAND Medical Outcomes Study". www.rand.org. Retrieved October 13, 2018.
  9. "Work and Social Adjustment Scale" (PDF). serene.me.
  10. 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.
  11. 11.0 11.1 11.2 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.
  12. Taylor, Jim (July 27, 2018). "'Vindication' for woman who wanted ME on death certificate". BBC Radio 5 Live.
  13. 13.0 13.1 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.
  14. The Caged Bird (2016). "ME Awareness May 2016". YouTube. Let's Do It for ME. Retrieved January 28, 2019.
  15. 15.0 15.1 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.
  16. 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.
  17. 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.
  18. 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.
  19. Pheby, Derek; Saffron, Lisa (2009). "Risk factors for severe ME/CFS" (PDF). Biology and Medicine. 1 (4): 50–74.
  20. 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.
  21. Pates, Andrew (November 14, 2014). "Severe M.E. Time to Deliver - Report" (PDF). actionforme.org.uk.
  22. 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.
  23. 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.
  24. 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.
  25. 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.
  26. Tomas, Cara; Elson, Joanna L.; Newton, Julia L.; Strassheim, Victoria; Walker, Mark (April 10, 2020). "The effect of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) severity on cellular bioenergetic function". PLoS ONE. 15 (4): e0231136. doi:10.1371/journal.pone.0231136.
  27. Healthcare (2021). "Special Issue: ME/CFS ― The Severely and Very Severely Affected". Healthcare. Retrieved February 19, 2021.
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