Disability: Difference between revisions

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==Statistics==
==Statistics==
*54% of ME/CFS patients reported being unemployed<ref>{{Cite web|url=https://www.nap.edu/read/19012/chapter/13#260|title=Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness|website=www.nationalacademies.org|access-date=2019-02-20|date=2015|last=|first=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|url-status=|page=|publisher=|pages=260-261|at=}}</ref>
*54% of ME/CFS patients reported being unemployed<ref name="Beyond">{{Cite web | url = https://www.nap.edu/read/19012/chapter/13#260 | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness|website=National Academies of Science|access-date=2019-02-20 | date = 2015 | last = | first = | authorlink = | archive-url = | archive-date = |url-status = | page=| publisher = }}</ref>{{Rp|260-261}}
*25% of ME/CFS patients are housebound or bedbound at some point in their illness<ref>{{Cite web|url=http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf|title=Myalgic Encelphalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=2015|website=nationalacademies.org|archive-url=|archive-date=|url-status=|access-date=}}</ref>
*25% of ME/CFS patients are housebound or bedbound at some point in their illness<ref name="KeyFacts">{{Cite web | url = https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf | title=Myalgic Encelphalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts | last = | first = | authorlink = | date = 2015 | website = National Academies of Science| archive-url = | archive-date = |url-status = | access-date=}}</ref>
*A number of studies and patient surveys have found patients with ME/CFS to have, on average, a lower quality of life, to be more severely disabled, and to have more comorbid chronic illnesses than patients with any of the other chronic illnesses used for comparison. (Neurological Alliance, 2019;<ref name="neuropatience">{{Citation|last=The Neurological Alliance|first=|title=Neuro Patience. Still waiting for improvements in treatment and care.|date=2019|url=https://www.neural.org.uk/wp-content/uploads/2019/07/neuro-patience-2019-1.pdf|edition=|isbn=|access-date=Sep 27, 2021|author-link=Neurological Alliance}}</ref> Hvidberg et al. 2015; Nacul et al. 2011<ref name="Nacul2011">{{Cite journal|last=Nacul|first=Luis C|author-link=Luis Nacul|last2=Lacerda|first2=Eliana M|author-link2=Eliana Lacerda|last3=Campion|first3=Peter|author-link3=|last4=Pheby|first4=Derek|author-link4=Derek Pheby|last5=Drachler|first5=Maria de L|author-link5=Maria de L Drachler|last6=Leite|first6=José C|author-link6=|last7=Poland|first7=Fiona|author-link7=|last8=Howe|first8=Amanda|author-link8=|last9=Fayyaz|first9=Shagufta|author-link9=|date=2011-05-27|title=The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers|url=https://doi.org/10.1186/1471-2458-11-402|journal=BMC Public Health|language=en|volume=11|issue=1|pages=402|doi=10.1186/1471-2458-11-402|issn=1471-2458|pmc=3123211|pmid=21619607|quote=|via=}}</ref>)
*A number of studies and patient surveys have found patients with ME/CFS to have, on average, a lower quality of life, to be more severely disabled, and to have more comorbid chronic illnesses than patients with any of the other chronic illnesses used for comparison. (Neurological Alliance, 2019<ref name="neuropatience">{{Citation | last = The Neurological Alliance | first = | title = Neuro Patience. Still waiting for improvements in treatment and care. | date = 2019 | url=https://www.neural.org.uk/wp-content/uploads/2019/07/neuro-patience-2019-1.pdf | edition=|isbn=|access-date=Sep 27, 2021 | authorlink = Neurological Alliance}}</ref>; Hvidberg et al. 2015<ref name=Hvidberg2015>{{cite journal | last1 = Hvidberg | first1 = Michael Falk | author-link1 = Michael Falk Hvidberg | last2 = Brinth | first2 = Louise Schouborg | authorlink2 = Louise Schouborg Brinth | last3 = Olesen | first3 = Anne V | authorlink3 = Anne V Oleson | last4 = Petersen | first4 = Karin D | authorlink4 = Karin Peterson | last5 = Ehlers | first5 = Lars | author-link5 = Lars Ehlers | title = The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) | journal = PLoS One|volume=10 |issue =7 | page=e0132421 | date = Jul 6, 2015 | doi = 10.1371/journal.pone.0132421 | url = http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421 }}</ref>; Nacul et al. 2011<ref name="Nacul2011">{{Cite journal | last = Nacul | first = Luis C | authorlink = Luis Nacul | last2 = Lacerda | first2 = Eliana M | authorlink2 = Eliana Lacerda | last3 = Campion | first3 = Peter | authorlink3 = | last4 = Pheby | first4 = Derek | authorlink4 = Derek Pheby | last5 = Drachler | first5 = Maria de L | author-link5 = Maria de L Drachler | last6 = Leite | first6 = José C | author-link6 = | last7 = Poland | first7 = Fiona | author-link7 = | last8 = Howe | first8 = Amanda | author-link8 = | last9 = Fayyaz | first9 = Shagufta | author-link9 = | date = 2011-05-27 | title = The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers |url =https://doi.org/10.1186/1471-2458-11-402|journal=BMC Public Health|language=en|volume=11|issue=1 | pages = 402|doi=10.1186/1471-2458-11-402|issn=1471-2458|pmc=3123211|pmid=21619607|quote=|via=}}</ref>)


== Evaluation of Disability ==
== Evaluation of Disability ==
[[United States]]
[[United States]]


BOX C-1<ref name=":0">{{Cite web|url=https://www.nap.edu/read/19012/chapter/13#258|title=Myalgic Encelphalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=2015|website=nap.edu|page=|pages=258-259|archive-url=|archive-date=|url-status=|access-date=}}</ref>
BOX C-1<ref name="Beyond"/>{{Rp|258-259}}


[[Social Security Administration]] Evaluation of Disability
[[Social Security Administration]] Evaluation of Disability


'''Medical Evidence'''
===Medical evidence===


For the purposes of Social Security Disability evaluation, in addition to a diagnosis of ME/CFS that meets the [[Fukuda criteria|Fukuda]] case definition, one or more of the following medical signs clinically documented over a period of at least 6 consecutive months is required to establish the existence of a medically determinable impairment (MDI) of [[Chronic fatigue syndrome|CFS]]:<ref name=":0" />
For the purposes of Social Security Disability evaluation, in addition to a diagnosis of ME/CFS that meets the [[Fukuda criteria|Fukuda]] case definition, one or more of the following medical signs clinically documented over a period of at least 6 consecutive months is required to establish the existence of a medically determinable impairment (MDI) of [[Chronic fatigue syndrome|CFS]]:<ref name="Beyond" />{{Rp|260-261}}
* palpably [[Swollen lymph nodes|swollen or tender lymph nodes]] on physical examination;
* palpably [[Swollen lymph nodes|swollen or tender lymph nodes]] on physical examination;
* nonexudative [[pharyngitis]];
* nonexudative [[pharyngitis]];
* persistent, reproducible muscle tenderness on repeated examinations, including the presence of positive tender points; or
* persistent, reproducible muscle tenderness on repeated examinations, including the presence of positive tender points; or
* any other medical signs that are consistent with medically accepted clinical practice and are consistent with the other evidence in the case record. For example, the [[Canadian Consensus Criteria]] (CCC) and [[International Consensus Criteria]] for [[Myalgic encephalomyelitis|ME]] (ME-ICC) explain that an acute [[Infection|infectious]] inflammatory event may precede the onset of CFS, and that other medical signs may be present, including
* any other medical signs that are consistent with medically accepted clinical practice and are consistent with the other evidence in the case record. For example, the [[Canadian Consensus Criteria]] (CCC) and [[International Consensus Criteria]] for [[Myalgic encephalomyelitis|ME]] (ME-ICC) explain that an acute [[Infection|infectious]] inflammatory event may precede the onset of CFS, and that other medical signs may be present, including
** frequent [[Viral infection|viral infections]] with prolonged recovery,
** [[sinusitis]],
** [[ataxia]],
** extreme [[pallor]], and
** pronounced weight change: [[Weight gain|gain]] or [[Weight loss|loss]].<ref name="Beyond"/>{{Rp|260-261}}
===Laboratory test results===


* – frequent [[Viral infection|viral infections]] with prolonged recovery,
Specific laboratory findings are not well established for ME/CFS. However, certain laboratory findings may support the finding of an MDI in people with ME/CFS even in the absence of the medical evidence listed above. It is not unusual to find standard laboratory tests in the normal range for many patients with ME/CFS, and SSA advises that such tests should not be relied upon to the exclusion of all other clinical evidence in decisions regarding the presence and severity of an MDI. The following laboratory findings establish the existence of an MDI in people with ME/CFS:<ref name="Beyond" />{{Rp|260-261}}
* – [[sinusitis]],
* – [[ataxia]],
* – extreme [[pallor]], and
* – pronounced weight change.<ref name=":0" /> [<nowiki/>[[Weight gain|Gain]] or [[Weight loss|loss]].]
'''Laboratory Findings'''
 
Specific laboratory findings are not well established for ME/CFS. However, certain laboratory findings may support the finding of an MDI in people with ME/CFS even in the absence of the medical evidence listed above. It is not unusual to find standard laboratory tests in the normal range for many patients with ME/CFS, and SSA advises that such tests should not be relied upon to the exclusion of all other clinical evidence in decisions regarding the presence and severity of an MDI. The following laboratory findings establish the existence of an MDI in people with ME/CFS:<ref name=":0" />
* an elevated antibody titer to [[Epstein-Barr virus]] (EBV) [[capsid antigen]] equal to or greater than 1:5,120, or early antigen equal to or greater than 1:640;
* an elevated antibody titer to [[Epstein-Barr virus]] (EBV) [[capsid antigen]] equal to or greater than 1:5,120, or early antigen equal to or greater than 1:640;
* an abnormal [[magnetic resonance imaging]] (MRI) [[Brain imaging|brain scan]];
* an abnormal [[magnetic resonance imaging]] (MRI) [[Neuroimaging|brain scan]];
* [[neurally mediated hypotension]] as shown by tilt table testing or another clinically accepted form of testing; or
* [[neurally mediated hypotension]] as shown by tilt table testing or another clinically accepted form of testing; or
* any other laboratory findings that are consistent with medically accepted clinical practice and are consistent with the other evidence in the case record (for example, an abnormal [[exercise stress test]] or abnormal [[Sleep study|sleep studies]], appropriately evaluated and consistent with the other evidence in the case record).<ref name=":0" />
* any other laboratory findings that are consistent with medically accepted clinical practice and are consistent with the other evidence in the case record (for example, an abnormal [[Two-day cardiopulmonary exercise test|exercise stress test]] or abnormal [[Sleep study|sleep studies]], appropriately evaluated and consistent with the other evidence in the case record).<ref name="Beyond" />
New laboratory and clinical evidence may emerge with continued research in ME/CFS. According to [[Social Security Administration|SSA]], these findings may be considered, in conjunction with laboratory findings discussed above, in the assessment of an MDI. Depending on the type of assessment, ongoing [[Emotional dysfunction|mental limitations]]<ref>{{Cite web|url=http://www.jamesdisabilitylaw.com/your-testimony/disability-benefits-mental-symptoms-limitations.htm|title=Eiligibility for Disability Benefits and Mental Symptoms & Limitations|website=James Disability Law|language=en-US|access-date=2019-02-22}}</ref> or [[Cognitive dysfunction|neurocognitive manifestations]]<ref>{{Cite web|url=https://www.merriam-webster.com/medical/neurocognitive|title=Medical Definition of NEUROCOGNITIVE|website=Merrian-Webster Dictionary|language=en|access-date=2019-02-22}}</ref> documented by a [[Mental health|mental status examination]] or psychological testing may be considered medical signs or laboratory findings.
New laboratory and clinical evidence may emerge with continued research in ME/CFS. According to [[Social Security Administration|SSA]], these findings may be considered, in conjunction with laboratory findings discussed above, in the assessment of an MDI. Depending on the type of assessment, ongoing [[mental health|mental limitations]]<ref name="JamesDLMental">{{Cite web | url = http://www.jamesdisabilitylaw.com/your-testimony/disability-benefits-mental-symptoms-limitations.htm | title = Eiligibility for Disability Benefits and Mental Symptoms & Limitations|website=James Disability Law|language=en-US|access-date=2019-02-22}}</ref> or [[Cognitive dysfunction|neurocognitive manifestations]]<ref name="neurocognitive">{{Cite web | url = https://www.merriam-webster.com/medical/neurocognitive | title = Medical Definition of NEUROCOGNITIVE|website=Merrian-Webster Dictionary|language=en|access-date=2019-02-22}}</ref> documented by a [[Mental health|mental status examination]] or psychological testing may be considered medical signs or laboratory findings.
 
SOURCE: Social Security Ruling, 2014.<ref name="Beyond" />


SOURCE: Social Security Ruling, 2014.<ref name=":0" />
==Notable studies ==
*2019, Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies<ref name="Vink2019">{{Cite journal | last = Vink | last2 = Vink-Niese | date = 2019-09-20 | title = Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies |url =https://www.mdpi.com/2075-4418/9/4/124|journal=Diagnostics|language=en|volume=9|issue=4 | pages = 124|doi=10.3390/diagnostics9040124|issn=2075-4418 | first = Mark | first2 = Alexandra|pmc=|pmid=|quote= | authorlink = Mark Vink | authorlink2 = Alexandra Vink-Niese|access-date=}}</ref> - [https://www.mdpi.com/2075-4418/9/4/124 (Full text)]
::People with ME/CFS often feel under pressure to continue working when they first become ill or when their symptoms worsen. Unfortunately, trying to [[pushing through symptoms|push through]] this illness is counterproductive, potentially causing longer sickness absences and slower recovery.
*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 | authorlink = Mark Vink | last2 = Vink-Niese | first2 = Alexandra | authorlink2 = |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)]


== See also ==
== See also ==
*[[:Category:Severity definitions|Severity definitions]]
*[[Access to benefits]]
'''Departments of Disability and Benefits'''
'''Departments of Disability and Benefits'''
* [[Department for Work and Pensions]] ([[United Kingdom|UK]])
* [[Department for Work and Pensions]] ([[United Kingdom|UK]])
* [[Social Security Administration]] ([[United States|US]])
* [[Social Security Administration]] ([[United States|US]])
'''Other'''
'''Other'''
Line 52: Line 57:


== Learn more ==
== Learn more ==
* Feb 21, 2019. [https://www.bbc.com/news/av/uk-wales-47317352/pip-appeals-i-ve-been-treated-like-a-liar-and-a-fake?fbclid=IwAR28KhtzaEzvOz4TYZWjXXQtK84eadpXV4Upp7gOYt8Kh6yOdMOHLAXivXc PIP appeals: 'I've been treated like a liar and a fake']<ref>{{Cite web|url=https://www.bbc.com/news/av/uk-wales-47317352/pip-appeals-i-ve-been-treated-like-a-liar-and-a-fake|title='I've been treated like a liar and a fake'|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=Feb 21, 2018|website=BBC News|language=en|archive-url=|archive-date=|url-status=|access-date=2019-02-22}}</ref> (With video short)
* Feb 21, 2019, [https://www.bbc.com/news/av/uk-wales-47317352/pip-appeals-i-ve-been-treated-like-a-liar-and-a-fake PIP appeals: 'I've been treated like a liar and a fake']<ref name="BBC-2018PIP">{{Cite news |url =https://www.bbc.com/news/av/uk-wales-47317352/pip-appeals-i-ve-been-treated-like-a-liar-and-a-fake | title = 'I've been treated like a liar and a fake' | last = | first = | authorlink = | date = Feb 21, 2018 | website = BBC News|language=en| archive-url = | archive-date = |url-status = | access-date=2019-02-22}}</ref> (With video short)


==References==
==References==
{{Reflist}}
{{Reflist}}
{{Stub}}
 
[[Category:Core topics]]
[[Category:Core topics]]
[[Category:Disability]]
[[Category:Disability]]

Latest revision as of 20:00, July 29, 2023

The degree of disability experienced by ME/CFS patients covers a wide range, but can be very severe.

Statistics[edit | edit source]

  • 54% of ME/CFS patients reported being unemployed[1]:260-261
  • 25% of ME/CFS patients are housebound or bedbound at some point in their illness[2]
  • A number of studies and patient surveys have found patients with ME/CFS to have, on average, a lower quality of life, to be more severely disabled, and to have more comorbid chronic illnesses than patients with any of the other chronic illnesses used for comparison. (Neurological Alliance, 2019[3]; Hvidberg et al. 2015[4]; Nacul et al. 2011[5])

Evaluation of Disability[edit | edit source]

United States

BOX C-1[1]:258-259

Social Security Administration Evaluation of Disability

Medical evidence[edit | edit source]

For the purposes of Social Security Disability evaluation, in addition to a diagnosis of ME/CFS that meets the Fukuda case definition, one or more of the following medical signs clinically documented over a period of at least 6 consecutive months is required to establish the existence of a medically determinable impairment (MDI) of CFS:[1]:260-261

Laboratory test results[edit | edit source]

Specific laboratory findings are not well established for ME/CFS. However, certain laboratory findings may support the finding of an MDI in people with ME/CFS even in the absence of the medical evidence listed above. It is not unusual to find standard laboratory tests in the normal range for many patients with ME/CFS, and SSA advises that such tests should not be relied upon to the exclusion of all other clinical evidence in decisions regarding the presence and severity of an MDI. The following laboratory findings establish the existence of an MDI in people with ME/CFS:[1]:260-261

New laboratory and clinical evidence may emerge with continued research in ME/CFS. According to SSA, these findings may be considered, in conjunction with laboratory findings discussed above, in the assessment of an MDI. Depending on the type of assessment, ongoing mental limitations[6] or neurocognitive manifestations[7] documented by a mental status examination or psychological testing may be considered medical signs or laboratory findings.

SOURCE: Social Security Ruling, 2014.[1]

Notable studies[edit | edit source]

  • 2019, Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies[8] - (Full text)
People with ME/CFS often feel under pressure to continue working when they first become ill or when their symptoms worsen. Unfortunately, trying to push through this illness is counterproductive, potentially causing longer sickness absences and slower recovery.
  • 2021, CFS patients remain severely disabled after specialist treatment with CBT in the UK[9] - (Full text)

See also[edit | edit source]

Departments of Disability and Benefits

Other

Learn more[edit | edit source]

References[edit | edit source]

  1. 1.0 1.1 1.2 1.3 1.4 1.5 1.6 "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness". National Academies of Science. 2015. Retrieved February 20, 2019.
  2. "Myalgic Encelphalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts" (PDF). National Academies of Science. 2015.
  3. The Neurological Alliance (2019), Neuro Patience. Still waiting for improvements in treatment and care. (PDF), retrieved September 27, 2021
  4. Hvidberg, Michael Falk; Brinth, Louise Schouborg; Olesen, Anne V; Petersen, Karin D; Ehlers, Lars (July 6, 2015). "The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)". PLoS One. 10 (7): e0132421. doi:10.1371/journal.pone.0132421.
  5. Nacul, Luis C; Lacerda, Eliana M; Campion, Peter; Pheby, Derek; Drachler, Maria de L; Leite, José C; Poland, Fiona; Howe, Amanda; Fayyaz, Shagufta (May 27, 2011). "The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers". BMC Public Health. 11 (1): 402. doi:10.1186/1471-2458-11-402. ISSN 1471-2458. PMC 3123211. PMID 21619607.
  6. "Eiligibility for Disability Benefits and Mental Symptoms & Limitations". James Disability Law. Retrieved February 22, 2019.
  7. "Medical Definition of NEUROCOGNITIVE". Merrian-Webster Dictionary. Retrieved February 22, 2019.
  8. Vink, Mark; Vink-Niese, Alexandra (September 20, 2019). "Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies". Diagnostics. 9 (4): 124. doi:10.3390/diagnostics9040124. ISSN 2075-4418.
  9. Vink, Mark; Vink-Niese, Alexandra (May 27, 2021). "CFS patients remain severely disabled after specialist treatment with CBT in the UK". Journal of the Royal Society of Medicine. 114 (6): 284–284. doi:10.1177/01410768211013447. ISSN 0141-0768. PMC 8212546. PMID 34042529.
  10. "'I've been treated like a liar and a fake'". BBC News. February 21, 2018. Retrieved February 22, 2019.