Ethical issues: Difference between revisions

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{{Quote2|Sufferers of ME are often stigmatised and marginalised, as their conditions are not fully recognised by the Government or the medical profession. A number of my constituents suffer from ME. At least two have been bedridden for 30 years because of their condition, and their story is not uncommon.|[[Mohammad Yasin]], MP|Appropriate ME Treatment debate (Jan 24, 2019)<ref name="hansardjan19">{{Cite web|url=https://hansard.parliament.uk/Commons/2019-01-24/debates/FA1BBC27-37A7-4BFD-A2C0-A58B57F41D4D/AppropriateMETreatment|title=Appropriate ME Treatment {{!}} 24 January 2019 Volume 653|last=Hansard {{!}} UK Parliament|first=|authorlink=|last2=|first2=|authorlink2=|date=Jan 24, 2019|website=hansard.parliament.uk|archive-url=|archive-date=|dead-url=|access-date=2019-01-25}}</ref>
{{Quote2|Sufferers of ME are often stigmatised and marginalised, as their conditions are not fully recognised by the Government or the medical profession. A number of my constituents suffer from ME. At least two have been bedridden for 30 years because of their condition, and their story is not uncommon.|Mohammad Yasin, MP|Appropriate ME Treatment debate (Jan 24, 2019)<ref name="hansardjan19">{{Cite web| url = https://hansard.parliament.uk/Commons/2019-01-24/debates/FA1BBC27-37A7-4BFD-A2C0-A58B57F41D4D/AppropriateMETreatment | title = Appropriate ME Treatment {{!}} 24 January 2019 Volume 653 | last = Hansard {{!}} UK Parliament | first = | authorlink = | date = Jan 24, 2019 | website = hansard.parliament.uk|archive-url=|archive-date=|url-status=|access-date=2019-01-25}}</ref>
}}
}}


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Experiences commonly reported include:
Experiences commonly reported include:
* denial of social security/disability benefits for those too ill to work<ref name="Disdain" /><ref name="Mihelicova" /><ref name="Geraghtyharm" />
* denial of social security/disability benefits for those too ill to work<ref name="Disdain" /><ref name="Mihelicova" /><ref name="Geraghtyharm" />
* refusing to accept that a patient is ill, treating a patient as if they are lying or faking symptoms, lazy or unmotivated, and denying treatment<ref name="Lapp2018">https://www.frontiersin.org/articles/10.3389/fped.2018.00415/full</ref>
* refusing to accept that a patient is ill, treating a patient as if they are lying or faking symptoms, lazy or unmotivated, and denying treatment<ref name="Lapp2018">{{Cite journal | last = Lapp | first = Charles W.  | author-link = Charles Lapp | date = 2019 | title=Initiating Care of a Patient With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)| url = https://www.frontiersin.org/articles/10.3389/fped.2018.00415/full|journal=Frontiers in Pediatrics|language=English|volume=6|issue=| pages=|doi=10.3389/fped.2018.00415|issn=2296-2360|pmc=|pmid=|access-date=|quote=|via=}}</ref>
* medical neglect, including denying basic medical treatment, or tests or investigations on the basis of the fact the person has [[ME/CFS]]<ref name="Mihelicova" /><ref name="Disdain" /><ref name="Geraghtyharm" /><ref name=":0">{{Cite web|url=http://www.forward-me.org.uk/Reports/10%20year%20surveillance%20(2017).pdf|title=10 year surveillance report consultation comments {{!}} NICE CFS/ME guidelines|last=Forward-ME|first=|authorlink=Forward-ME|date=2017|website=|archive-url=|archive-date=|dead-url=|access-date=2019-02-10}}</ref>
* medical neglect, including denying basic medical treatment, or tests or investigations on the basis of the fact the person has [[ME/CFS]]<ref name="Mihelicova" /><ref name="Disdain" /><ref name="Geraghtyharm" /><ref name=":0">{{Cite web| url = http://www.forward-me.org.uk/Reports/10%20year%20surveillance%20(2017).pdf | title=10 year surveillance report consultation comments {{!}} NICE CFS/ME guidelines | last = Forward-ME | first = | authorlink = Forward-ME | date = 2017 | website = |archive-url=|archive-date=|url-status=|access-date=2019-02-10}}</ref>
* [[Medical gaslighting]], including physical symptoms of illness being misdiagnosed as mental illness, resulting in denial of medical care or inappropriate treatments, and denial of disability aids, and limited / reduced disability or sickness payments<ref name="HughesGaslighting">{{Cite web|url=https://thesciencebit.net/2019/03/21/if-you-spend-20-years-gaslighting-your-patients-perhaps-you-should-think-twice-before-accusing-them-of-trolling-you/|title=If you spend 20 years gaslighting your patients, perhaps you should think twice before accusing *them* of trolling *you*|last=Hughes|first=Brian|authorlink=Brian Hughes|last2=|first2=|authorlink2=|date=2019-03-21|website=The Science Bit|language=en-US|archive-url=|archive-date=|dead-url=|access-date=2020-10-24}}</ref><ref name="ABC">{{Cite web|url=https://www.abc.net.au/news/health/2020-10-23/doctors-with-long-covid-warn-long-term-effects-can-be-serious/12785934|title=Doctors warn of lasting effects of COVID-19 after struggling to recover from virus|last=Mitchell|first=Natasha|authorlink=|last2=|first2=|authorlink2=|date=2020-10-22|website=www.abc.net.au|language=en-AU|archive-url=|archive-date=|dead-url=|access-date=2020-10-24}}</ref>
* [[Medical gaslighting]], including physical symptoms of illness being misdiagnosed as mental illness, resulting in denial of medical care or inappropriate treatments, and denial of disability aids, and limited / reduced disability or sickness payments<ref name="HughesGaslighting">{{Cite web| url = https://thesciencebit.net/2019/03/21/if-you-spend-20-years-gaslighting-your-patients-perhaps-you-should-think-twice-before-accusing-them-of-trolling-you/ | title = If you spend 20 years gaslighting your patients, perhaps you should think twice before accusing *them* of trolling *you* | last = Hughes | first = Brian | authorlink = Brian Hughes | date = 2019-03-21 | website = The Science Bit|language=en-US|archive-url=|archive-date=|url-status=|access-date=2020-10-24}}</ref><ref name="ABC">{{Cite web| url = https://www.abc.net.au/news/health/2020-10-23/doctors-with-long-covid-warn-long-term-effects-can-be-serious/12785934 | title = Doctors warn of lasting effects of COVID-19 after struggling to recover from virus | last = Mitchell | first = Natasha | authorlink = | date = 2020-10-22 | website = ABC News|language=en-AU|archive-url=|archive-date=|url-status=|access-date=2020-10-24}}</ref>
* forced in-patient mental health treatment in patients without a [[mental health]] condition<ref name="Blease2017" /><ref name="hansardjan19" /> as experienced by [[Sophia Mirza]]
* forced in-patient mental health treatment in patients without a [[mental health]] condition<ref name="Blease2017" /><ref name="hansardjan19" /> as experienced by [[Sophia Mirza]]
* large numbers of children with ME/CFS put on child protection and "at risk" registers and separated from their parents, who are investigated for child abuse and [[Munchausen syndrome by proxy|Munchausen Syndrome by Proxy/Fabricated Induced Illness]]<ref name="colby2014">{{Cite web|url=https://www.tymestrust.org/pdfs/falseallegations.pdf|title=False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME)|last=Colby|first=Jane|authorlink=Jane Colby|last2=|first2=|authorlink2=|date=2014|website=[[Tymes Trust]]|archive-url=|archive-date=|dead-url=|access-date=}}</ref>  
* large numbers of children with ME/CFS put on child protection and "at risk" registers and separated from their parents, who are investigated for child abuse and [[Munchausen syndrome by proxy|Munchausen Syndrome by Proxy/Fabricated Induced Illness]]<ref name="colby2014">{{Cite web| url = https://www.tymestrust.org/pdfs/falseallegations.pdf | title=False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME) | last = Colby | first = Jane | authorlink = Jane Colby | date = 2014 | website = [[Tymes Trust]]|archive-url=|archive-date=|url-status=|access-date=}}</ref>  
* children too ill to attend school have been diagnosed with "[[Pervasive School Refusal Syndrome|Pervasive Refusal Syndrome]]", or abnormal illness behavior<ref name="speight2911">{{Cite web|url=https://www.tymestrust.org/pdfs/vision2011-1insert.pdf|title=Does graded exercise therapy cure ME?|last=Speight|first=Nigel|authorlink=Nigel Speight|last2=|first2=|authorlink2=|date=2011|website=[[Tymes Trust]]|archive-url=|archive-date=|dead-url=|access-date=2019-02-10}}</ref>
* children too ill to attend school have been diagnosed with "[[Pervasive School Refusal Syndrome|Pervasive Refusal Syndrome]]", or abnormal illness behavior<ref name="speight2911">{{Cite web| url = https://www.tymestrust.org/pdfs/vision2011-1insert.pdf | title=Does graded exercise therapy cure ME? | last = Speight | first = Nigel | authorlink = Nigel Speight | date = 2011 | website = [[Tymes Trust]]|archive-url=|archive-date=|url-status=|access-date=2019-02-10}}</ref>
* patients are blamed when treatments do not work
* patients are blamed when treatments do not work
* becoming very angry with patients, in one clinical trial some nurses viewed [[Severe and very severe ME|severely ill patients]] as "The bastards don't want to get better"<ref name="Peters2011">{{Cite journal|last=Peters|first=Sarah|author-link=Sarah Peters|last2=Wearden|first2=Alison|author-link2=Alison Wearden|last3=Morriss|first3=Richard|author-link3=Richard Morriss|last4=Dowrick|first4=Christopher F|author-link4=Christopher Dowrick|last5=Lovell|first5=Karina|author-link5=Karina Lovell|last6=Brooks|first6=Joanna|author-link6=Joanna Brooks|last7=Cahill|first7=Greg|author-link7=Greg Cahill|last8=Chew-Graham|first8=Carolyn|author-link8=Carolyn Chew-Graham|date=Dec 2011|title=Challenges of nurse delivery of psychological interventions for long-term conditions in primary care: a qualitative exploration of the case of chronic fatigue syndrome/myalgic encephalitis|url=http://implementationscience.biomedcentral.com/articles/10.1186/1748-5908-6-132|journal=Implementation Science|language=en|volume=6|issue=1|pages=|doi=10.1186/1748-5908-6-132|issn=1748-5908|pmc=3259041|pmid=22192566|quote=there is sort of feeling that the patient should be grateful and follow your advice, and in actual fact, what happens is the patient is quite resistant and there is this thing like you know, “The bastards don’t want to get better...|via=}}</ref> ~ Nurse supervisor, [[FINE trial]]
* becoming very angry with patients, in one clinical trial some nurses viewed [[Severe and very severe ME|severely ill patients]] as "The bastards don't want to get better"<ref name="Peters2011">{{Cite journal | last = Peters | first = Sarah | author-link = Sarah Peters | last2 = Wearden | first2 = Alison | authorlink2 = Alison Wearden | last3 = Morriss | first3 = Richard | authorlink3 = Richard Morriss | last4 = Dowrick | first4 = Christopher F | authorlink4 = Christopher Dowrick | last5 = Lovell | first5 = Karina | authorlink5 = Karina Lovell | last6 = Brooks | first6 = Joanna | authorlink6 = Joanna Brooks | last7 = Cahill | first7 = Greg | author-link8 = Greg Cahill | last8 = Chew-Graham | first8 = Carolyn | author-link8 = Carolyn Chew-Graham | date = Dec 2011 | title = Challenges of nurse delivery of psychological interventions for long-term conditions in primary care: a qualitative exploration of the case of chronic fatigue syndrome/myalgic encephalitis |url =http://implementationscience.biomedcentral.com/articles/10.1186/1748-5908-6-132|journal=Implementation Science|language=en|volume=6|issue=1| pages=|doi=10.1186/1748-5908-6-132|issn=1748-5908|pmc=3259041|pmid=22192566|quote=there is sort of feeling that the patient should be grateful and follow your advice, and in actual fact, what happens is the patient is quite resistant and there is this thing like you know, “The bastards don’t want to get better...|via=}}</ref> ~ Nurse supervisor, [[FINE trial]]
* medical professionals accuse patients of not wanting to recover or "benefitting" from their illness<ref name="Peters2011" />With these people, it isn't that they don't want to get better but if the price is recognising the psychiatric basis of the condition, they'd rather not get better". ~ Sir [[Simon Wessely]]<ref name="dangersofresearch">{{Cite journal|last=Hawkes|first=Nigel|author-link=|author-link2=|author-link3=|author-link4=|author-link5=|date=Jun 22, 2011|title=The dangers of research into CFS/ME|url=https://www.bmj.com/bmj/section-pdf/187262?path=/bmj/342/7812/Feature.full.pdf|journal=[[BMJ]]|volume=342|issue=d3780|pages=1392-1384|quote=|via=|doi=10.1136/bmj.d3780}}</ref>
* medical professionals accuse patients of not wanting to recover or "benefitting" from their illness<ref name="Peters2011" />With these people, it isn't that they don't want to get better but if the price is recognising the psychiatric basis of the condition, they'd rather not get better". ~ Sir [[Simon Wessely]]<ref name="dangersofresearch">{{Cite journal | last = Hawkes | first = Nigel | authorlink = | date = Jun 22, 2011 | title = The dangers of research into CFS/ME| url = https://www.bmj.com/bmj/section-pdf/187262?path=/bmj/342/7812/Feature.full.pdf | journal=[[BMJ]]|volume=342|issue=d3780 | pages = 1392-1384|quote=|via=|doi=10.1136/bmj.d3780}}</ref>
* patients labelled "resistant to treatment"<ref name="Peters2011" />
* patients labelled "resistant to treatment"<ref name="Peters2011" />
* medical professionals being so convinced that a treatment would work that they accuse patients of not complying with it, or remove their diagnosis and misdiagnosis a psychiatric illness instead, for instance interpreting inability to wash or eat as self-neglect from [[Depression]] or [[Pervasive Refusal Syndrome]], or severe gastrointestinal illness causing severe weight loss as [[anorexia, eating disorders and ME/CFS|anorexia]]
* medical professionals being so convinced that a treatment would work that they accuse patients of not complying with it, or remove their diagnosis and misdiagnosis a psychiatric illness instead, for instance interpreting inability to wash or eat as self-neglect from [[Depression]] or [[Pervasive Refusal Syndrome]], or severe gastrointestinal illness causing severe weight loss as [[anorexia, eating disorders and ME/CFS|anorexia]]
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===Social care and disability benefits ===
===Social care and disability benefits ===
A report from the [[CFS/ME Observatory]] project in the [[UK]] found that the knowledge, behaviors and [[stigma |attitudes]] of health and social care staff often led to patients not being diagnosed for years, and as a result struggling to access essential social care, health care or disability benefits. People in the UK identifying as Black, Asian or from ethnic minorities found it even harder to get a diagnosis and appropriate care. Some people reported being incorrectly diagnosed with [[anxiety]] or [[depression]] while their ME/CFS symptoms were ignored, and offered only [[antidepressant]]s as a result. The [[Department for Work and Pensions|UK social security disability assessment process]] was described as being unsuitable for assessing ME/CFS.<ref name="socialsupport2011">{{Citation
A report from the [[CFS/ME Observatory]] project in the [[UK]] found that the knowledge, behaviors and [[stigma |attitudes]] of health and social care staff often led to patients not being diagnosed for years, and as a result struggling to access essential social care, health care or disability benefits. People in the UK identifying as Black, Asian or from ethnic minorities found it even harder to get a diagnosis and appropriate care. Some people reported being incorrectly diagnosed with [[anxiety]] or [[depression]] while their ME/CFS symptoms were ignored, and offered only [[antidepressant]]s as a result. The [[Department for Work and Pensions|UK social security disability assessment process]] was described as being unsuitable for assessing ME/CFS.<ref name="socialsupport2011">{{Citation | last1 = de Carvalho Leite | first1 = JC | author-link1 = José de Carvalho Leite | last2 = de L Drachler | first2 = M | authorlink2 = Maria de L Drachler | last3 = Killett | first3 = A | authorlink3 = Anne Killett | last4 = Kale | first4 = S | authorlink4 = Swati Kale | last5 = Nacul | first5 = L | authorlink5 = Luis Nacul | last6 = McArthur | first6 = M | authorlink6 = Maggie McArthur | last7 = Hong | first7 = CS | author-link8 = Chia Hong | last8 = O'Driscoll | first8 = L | author-link8 = Lucy Driscoll | last9 = Pheby | first9 = D | author-link9 = Derek Pheby | last10 = Campion | first10 = P | author-link10 = Peter Campion | last11 = Lacerda | first11 = E | author-link11 = Eliana Lacerda | last12 = Poland | first12 = F | author-link12 = Fiona Poland | title = Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis | journal =International Journal for Equity in Health | volume = 2 | issue = 10 | pages = 46 | date = 2011 | pmid = | doi = 10.1186/1475-9276-10-46 | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3229491/| pmc = PMC3229491}}</ref>
| last1   = de Carvalho Leite   | first1 = JC               | authorlink1 = José de Carvalho Leite
| last2   = de L Drachler       | first2 = M               | authorlink2 = Maria de L Drachler
| last3   = Killett             | first3 = A               | authorlink3 = Anne Killett
| last4   = Kale               | first4 = S               | authorlink4 = Swati Kale
| last5   = Nacul               | first5 = L               | authorlink5 = Luis Nacul
| last6   = McArthur           | first6 = M               | authorlink6 = Maggie McArthur
| last7   = Hong               | first7 = CS               | authorlink7 = Chia Hong
| last8   = O'Driscoll         | first8 = L               | authorlink8 = Lucy Driscoll  
| last9   = Pheby               | first9 = D               | authorlink9 = Derek Pheby
| last10 = Campion             | first10 = P               | authorlink10 = Peter Campion
| last11 = Lacerda             | first11 = E               | authorlink11 = Eliana Lacerda
| last12 = Poland             | first12 = F               | authorlink12 = Fiona Poland  
| title   = Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis
| journal = International Journal for Equity in Health   | volume = 2   | issue = 10   | page = 46
| date   = 2011
| pmid   =  
| doi     = 10.1186/1475-9276-10-46
|url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3229491/
| pmc = 3229491
}}
</ref>


==Prevalence of false child abuse allegations==
==Prevalence of false child abuse allegations==
In the [[United Kingdom]], a small survey of children with [[ME/CFS]] found that 25% of children had bee a doctor or another professional that their parents/carers were the cause of their illness; some of these had children protection/safeguarding issues raised as a result of their illness.<ref name="ourneedsourlives">{{Cite web|url=http://www.tymestrust.org/pdfs/ourneedsourlives.pdf|title=Our Lives Our Needs|last=Tymes Trust|first=|authorlink=Tymes Trust|last2=|first2=|authorlink2=|date=2003|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref> A survey after a 1999 UK documary also revealed that many parents or carers had been suspected or accused of intentionally fabricating their child's illness, 4% of families who responded to the survey reported a parent being labeled as having [[Munchausen syndrome by proxy]] (Fabricated Induced Illness).<ref name="panorama">{{Cite web|url=http://news.bbc.co.uk/2/hi/events/panorama/506549.stm|title=Panorama {{!}} Sick and Tired|last=BBC news|first=|authorlink=Sick and Tired - BBC|last2=|first2=|authorlink2=|date=Nov 8, 1999|website=news.bbc.co.uk|archive-url=|archive-date=|dead-url=|access-date=2019-02-12}}</ref>
In the [[United Kingdom]], a small survey of children with [[ME/CFS]] found that 25% of children had bee a doctor or another professional that their parents/carers were the cause of their illness; some of these had children protection/safeguarding issues raised as a result of their illness.<ref name="ourneedsourlives">{{Cite web| url = http://www.tymestrust.org/pdfs/ourneedsourlives.pdf | title=Our Lives Our Needs | last = Tymes Trust | first = | authorlink = Tymes Trust | date = 2003 | website = |archive-url=|archive-date=|url-status=|access-date=}}</ref> A survey after a 1999 UK documary also revealed that many parents or carers had been suspected or accused of intentionally fabricating their child's illness, 4% of families who responded to the survey reported a parent being labeled as having [[Munchausen syndrome by proxy]] (Fabricated Induced Illness).<ref name="panorama">{{Cite news |url =http://news.bbc.co.uk/2/hi/events/panorama/506549.stm | title = Panorama {{!}} Sick and Tired | last = BBC News | first = | authorlink = Sick and Tired - BBC | date = Nov 8, 1999 | website = BBC News|archive-url=|archive-date=|url-status=|access-date=2019-02-12}}</ref>


===Research ethics complaints ===
===Research ethics complaints ===
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==Notable studies==
==Notable studies==


*2008, Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)—A case study<ref>{{Cite journal|last=Gilje|first=Ann Marit|author-link=Ann Marit Gilje|last2=Söderlund|first2=Atle|author-link2=Atle Söderlund|last3=Malterud|first3=Kirsti|author-link3=Kirsti Malterud|author-link4=|author-link5=|date=Oct 2008|title=Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)—A case study|url=https://linkinghub.elsevier.com/retrieve/pii/S0738399108001936|journal=[[Patient Education and Counseling]]|language=en|volume=73|issue=1|pages=36–41|doi=10.1016/j.pec.2008.04.001|quote=|via=}}</ref> [https://linkinghub.elsevier.com/retrieve/pii/S0738399108001936 (Abstract)]  
*2008, Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)—A case study<ref>{{Cite journal | last = Gilje | first = Ann Marit | authorlink = Ann Marit Gilje | last2 = Söderlund | first2 = Atle | authorlink2 = Atle Söderlund | last3 = Malterud | first3 = Kirsti | authorlink3 = Kirsti Malterud | authorlink4 = | authorlink5 = | date = Oct 2008 | title = Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)—A case study| url = https://linkinghub.elsevier.com/retrieve/pii/S0738399108001936|journal=Patient Education and Counseling|language=en|volume=73|issue=1 | pages = 36–41|doi=10.1016/j.pec.2008.04.001|quote=|via=}}</ref> [https://linkinghub.elsevier.com/retrieve/pii/S0738399108001936 (Abstract)]  


*2015, [http://www.wakeupcallbeweging.be/pdf/30yearsdisdainsummary.pdf THIRTY YEARS OF DISDAIN: How HHS and A Group of Psychiatrists Buried Myalgic Encephalomyelitis]<ref name="Disdain">{{Cite web|url=http://www.wakeupcallbeweging.be/pdf/30yearsdisdainsummary.pdf|title=THIRTY YEARS OF DISDAIN: How HHS and a group of psychiatrists Buried Myalgic Encephalomyelitis|last=Dimmock|first=Mary|authorlink=Mary Dimmock|last2=Lazell-Fairman|first2=Matthew|authorlink2=Matthew Lazell-Fairman|date=Dec 2015|website=|archive-url=|archive-date=|dead-url=|access-date=Nov 5, 2018}}</ref>  
*2015, [http://www.wakeupcallbeweging.be/pdf/30yearsdisdainsummary.pdf THIRTY YEARS OF DISDAIN: How HHS and A Group of Psychiatrists Buried Myalgic Encephalomyelitis]<ref name="Disdain">{{Cite web| url = http://www.wakeupcallbeweging.be/pdf/30yearsdisdainsummary.pdf | title=THIRTY YEARS OF DISDAIN: How HHS and a group of psychiatrists Buried Myalgic Encephalomyelitis | last = Dimmock | first = Mary | authorlink = Mary Dimmock | last2 = Lazell-Fairman | first2 = Matthew | authorlink2 = Matthew Lazell-Fairman | date = Dec 2015 | website = |archive-url=|archive-date=|url-status=|access-date=Nov 5, 2018}}</ref>  


*2016, [https://www.research.manchester.ac.uk/portal/en/publications/cognitive-behavioural-therapy-in-the-treatment-of-chronic-fatigue-syndrome-a-narrative-review-on-efficacy-and-informed-consent(987590d0-a62d-473e-8d46-b74b9247e81c).html "Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent"]<ref name="BleaseGeraghty2016a">{{Cite journal  
*2016, [https://www.research.manchester.ac.uk/portal/en/publications/cognitive-behavioural-therapy-in-the-treatment-of-chronic-fatigue-syndrome-a-narrative-review-on-efficacy-and-informed-consent(987590d0-a62d-473e-8d46-b74b9247e81c).html "Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent"]<ref name="BleaseGeraghty2016a">{{Cite journal | last1 = Blease | first1 = Charlotte | author-link1 = Charlotte Blease | last2 = Geraghty | first2 = Keith | authorlink2 = Keith Geraghty | title = Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent | url =
| last1   = Blease             | first1 = Charlotte         | authorlink1 = Charlotte Blease
https://doi.org/10.1177/1359105316667798 | journal =[[Journal of Health Psychology]]|volume=23|issue=1 | pages = 127-138 | date = Sep 15, 2016 | doi = 10.1177/1359105316667798}}</ref>
| last2   = Geraghty           | first2 = Keith             | authorlink2 = Keith Geraghty
| title   = Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent
| type    = Journal of Health Psychology
| date   = Sep 15, 2016
| doi     = 10.1177/1359105316667798
|url = https://doi.org/10.1177/1359105316667798
}}</ref>


*2016, Editorial - [https://www.ncbi.nlm.nih.gov/pubmed/27807258 "'PACE-Gate': When clinical trial evidence meets open data access"]<ref name="Geraghty2016">{{Cite journal  
*2016, Editorial - [https://www.ncbi.nlm.nih.gov/pubmed/27807258 "'PACE-Gate': When clinical trial evidence meets open data access"]<ref name="Geraghty2016">{{Cite journal | last1 = Geraghty | first1 = Keith | author-link1 = Keith Geraghty | title = 'PACE-Gate': When clinical trial evidence meets open data access | journal =[[Journal of Health Psychology]] | volume = 22 | issue = 9 | pages = 1106-1112 | date = Sep 23, 2016 | pmid = 27807258| doi =| url = https://www.ncbi.nlm.nih.gov/pubmed/27807258 }}</ref>
| last1   = Geraghty             | first1 = Keith           | authorlink1 = Keith Geraghty
| title   = 'PACE-Gate': When clinical trial evidence meets open data access
| journal = Journal of Health Psychology   | volume =   | issue =   | page =  
| date   = Sep 23, 2016
| pmid   = 27807258
| doi =
| url = https://www.ncbi.nlm.nih.gov/pubmed/27807258
}}</ref>


*2016, [http://bjgp.org/content/66/649/437 "Chronic fatigue syndrome: is the biopsychosocial model responsible for patient dissatisfaction and harm?"]<ref name="Geraghty,Esmail, 2016">{{Cite journal  
*2016, [http://bjgp.org/content/66/649/437 "Chronic fatigue syndrome: is the biopsychosocial model responsible for patient dissatisfaction and harm?"]<ref name="Geraghty,Esmail, 2016">{{Cite journal | last1 = Geraghty | first1 = Keith | author-link1 = Keith Geraghty | last2 = Esmail | first2 = Aneez | authorlink2 = Aneez Esmail | title = Chronic fatigue syndrome: is the biopsychosocial model responsible for patient dissatisfaction and harm? | journal =British Journal of General Practice | volume = 66 | issue =649 | pages = 437-438 | date = Aug 1, 2016 | doi = 10.3399/bjgp16X686473|url = https://doi.org/10.3399/bjgp16X686473 }}</ref>
| last1   = Geraghty           | first1 = Keith             | authorlink1 = Keith Geraghty
| last2   = Esmail             | first2 = Aneez             | authorlink2 = Aneez Esmail
| title   = Chronic fatigue syndrome: is the biopsychosocial model responsible for patient dissatisfaction and harm?
| journal = British Journal of General Practice   | volume = 66   | issue =649   | page = 437-438
| date   = 1 Aug 2016
| doi     = 10.3399/bjgp16X686473
|url     = https://doi.org/10.3399/bjgp16X686473
}}
</ref>


*2016, [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4675701/ Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents’ Experiences]<ref name="Mihelicova">{{Cite journal|last=Mihelicova|first=Martina|author-link=Martina Mihelicova|last2=Siegel|first2=Zachary|author-link2=Zachary Siegel|last3=Evans|first3=Meredyth|author-link3=Meredyth Evans|last4=Brown|first4=Abigail|author-link4=Abigail Brown|last5=Jason|first5=Leonard|author-link5=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>
*2016, [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4675701/ Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents’ Experiences]<ref name="Mihelicova">{{Cite journal | last = Mihelicova | first = Martina | author-link = Martina Mihelicova | last2 = Siegel | first2 = Zachary | authorlink2 = Zachary Siegel | last3 = Evans | first3 = Meredyth | authorlink3 = Meredyth Evans | last4 = Brown | first4 = Abigail | authorlink4 = 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>


*2017, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer<ref name="Rowe2017">{{Cite journal|last=Rowe|first=Peter C.|last2=Underhill|first2=Rosemary A.|last3=Friedman|first3=Kenneth J.|last4=Gurwitt|first4=Alan|last5=Medow|first5=Marvin S.|last6=Schwartz|first6=Malcolm S.|last7=Speight|first7=Nigel|last8=Stewart|first8=Julian M.|last9=Vallings|first9=Rosamund|date=2017|title=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer|url=https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full|journal=Frontiers in Pediatrics|language=English|volume=5|doi=10.3389/fped.2017.00121|issn=2296-2360|issue=121|pages=|author-link=Peter Rowe|author-link2=Rosemary Underhill|author-link3=Kenneth Friedman|author-link4=Alan Gurwitt|author-link5=Marvin Medow|via=|author-link6=Malcolm Schwartz|author-link7=Nigel Speight|author-link8=Julian Stewart|author-link9=Rosamund Vallings|last10=Rowe|first10=Katherine S.|author-link10=Katherine Rowe|quote=Sometimes disbelief in the authenticity of their child’s illness has led the non-custodial parent to report the custodial parent to social services as a potential case of child neglect or factitious and induced Illness/Munchausen’s syndrome by proxy. Members of the wider extended family who show disbelief in the illness can also cause problems, even from a distance."}}</ref> [https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full (Full Text)]
*2017, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer<ref name="Rowe2017">{{Cite journal | last = Rowe | first = Peter C. | last2 = Underhill | first2 = Rosemary A. | last3 = Friedman | first3 = Kenneth J. | last4 = Gurwitt | first4 = Alan | last5 = Medow | first5 = Marvin S. | last6 = Schwartz | first6 = Malcolm S. | last7 = Speight | first7 = Nigel | last8 = Stewart | first8 = Julian M. | last9 = Vallings | first9 = Rosamund | date = 2017 | authorlink = Peter Rowe | authorlink2 = Rosemary Underhill | authorlink3 = Kenneth Friedman | authorlink4 = Alan Gurwitt | authorlink5 = Marvin Medow | authorlink6 = Malcolm Schwartz | author-link8 = Nigel Speight | author-link8 = Julian Stewart | author-link9 = Rosamund Vallings | last10 = Rowe | first10 = Katherine S. | author-link10 = Katherine Rowe | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer |url =https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full|journal=Frontiers in Pediatrics|language=English|volume=5|doi=10.3389/fped.2017.00121|issn=2296-2360|issue=121| pages=|quote=Sometimes disbelief in the authenticity of their child’s illness has led the non-custodial parent to report the custodial parent to social services as a potential case of child neglect or factitious and induced Illness/Munchausen’s syndrome by proxy. Members of the wider extended family who show disbelief in the illness can also cause problems, even from a distance."}}</ref> [https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full (Full Text)]


* 2017, Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome<ref name="Blease2017">{{Cite journal|last=Blease|first=Charlotte|author-link=Charlotte Blease|last2=Carel|first2=Havi|author-link2=Havi Carel|last3=Geraghty|first3=Keith|author-link3=Keith Geraghty|author-link4=|author-link5=|date=2017-08-01|title=Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome|url=https://jme.bmj.com/content/43/8/549|journal=Journal of Medical Ethics|language=en|volume=43|issue=8|pages=549–557|doi=10.1136/medethics-2016-103691|issn=0306-6800|pmid=27920164|quote=|via=}}</ref> [https://jme.bmj.com/content/43/8/549| (Full text)]
* 2017, Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome<ref name="Blease2017">{{Cite journal | last = Blease | first = Charlotte | authorlink = Charlotte Blease | last2 = Carel | first2 = Havi | authorlink2 = Havi Carel | last3 = Geraghty | first3 = Keith | authorlink3 = Keith Geraghty | date = 2017-08-01 | title = Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome | url =https://jme.bmj.com/content/43/8/549|journal=Journal of Medical Ethics|language=en|volume=43|issue=8 | pages = 549–557|doi=10.1136/medethics-2016-103691|issn=0306-6800|pmid=27920164|quote=|via=}}</ref> [https://jme.bmj.com/content/43/8/549| (Full text)]


*2018, Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter<ref name="Geraghtyharm">{{Cite journal|last=Geraghty|first=Keith J.|author-link=Keith Geraghty|last2=Blease|first2=Charlotte|author-link2=Charlotte Blease|author-link3=|author-link4=|author-link5=|date=2018-06-21|title=Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter|url=https://www.tandfonline.com/action/captchaChallenge?redirectUri=%2Fdoi%2Ffull%2F10.1080%2F09638288.2018.1481149|journal=Disability and Rehabilitation|language=en|volume=|issue=|pages=1–10|doi=10.1080/09638288.2018.1481149|issn=0963-8288|quote=|via=}}</ref> [https://www.tandfonline.com/doi/full/10.1080/09638288.2018.1481149 (Abstract)]
*2018, Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter<ref name="Geraghtyharm">{{Cite journal | last = Geraghty | first = Keith J. | author-link = Keith Geraghty | last2 = Blease | first2 = Charlotte | authorlink2 = Charlotte Blease | date = 2018-06-21 | title = Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter |url =https://www.tandfonline.com/doi/full/10.1080/09638288.2018.1481149 |journal=Disability and Rehabilitation|language=en|volume=41|issue=25 | pages = 3092-3102|doi=10.1080/09638288.2018.1481149|issn=0963-8288|quote=|via=}}</ref> [https://www.tandfonline.com/doi/full/10.1080/09638288.2018.1481149 (Abstract)]
*2019, Ethical classification of ME/CFS in the United Kingdom<ref>{{Cite journal|last=O'Leary|first=Diane|author-link=Diane O'Leary|author-link2=|author-link3=|author-link4=|author-link5=|date=Feb 2019|title=Ethical classification of ME/CFS in the United Kingdom|url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bioe.12559|journal=Bioethics|language=en|volume=|issue=|pages=|doi=10.1111/bioe.12559|issn=1467-8519|quote=|via=}}</ref> [https://onlinelibrary.wiley.com/doi/full/10.1111/bioe.12559 (Abstract)]
*2019, Ethical classification of ME/CFS in the United Kingdom<ref>{{Cite journal | last = O'Leary | first = Diane | authorlink = Diane O'Leary | date = Feb 2019 | title = Ethical classification of ME/CFS in the United Kingdom| url = https://onlinelibrary.wiley.com/doi/abs/10.1111/bioe.12559|journal=Bioethics|language=en|volume=|issue=| pages=|doi=10.1111/bioe.12559|issn=1467-8519|quote=|via=}}</ref> [https://onlinelibrary.wiley.com/doi/full/10.1111/bioe.12559 (Abstract)]


*2019, Faces of fatigue: Ethical considerations<ref>{{Cite web|url=http://www.bioethics.net/articles/faces-of-fatigue-ethical-considerations-on-the-treatment-of-chronic-fatigue-syndrome/|title=Faces of Fatigue: Ethical Considerations on the Treatment of Chronic Fatigue Syndrome {{!}} Bioethics.net|website=www.bioethics.net|access-date=2019-02-10}}</ref> [http://www.bioethics.net/articles/faces-of-fatigue-ethical-considerations-on-the-treatment-of-chronic-fatigue-syndrome/ (Abstract)]
*2019, Faces of fatigue: Ethical considerations on the treatment of chronic fatigue syndrome<ref>{{Cite web| url = http://www.bioethics.net/articles/faces-of-fatigue-ethical-considerations-on-the-treatment-of-chronic-fatigue-syndrome/ | title = Faces of Fatigue: Ethical Considerations on the Treatment of Chronic Fatigue Syndrome|website=Bioethics Today|url-status=dead|access-date=2019-02-10}}</ref> [http://www.bioethics.net/articles/faces-of-fatigue-ethical-considerations-on-the-treatment-of-chronic-fatigue-syndrome/ (Abstract)]


*2019, Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade<ref name="Friedberg2019">{{Cite journal|title=Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade|url=https://doi.org/10.1080/21641846.2020.1718292|journal=Fatigue: Biomedicine, Health & Behavior|date=2020-01-02|issn=2164-1846|pages=24–31|volume=8|issue=1|doi=10.1080/21641846.2020.1718292|first=Fred|last=Friedberg|last2=|first2=|pmc=|pmid=|quote=|last3=|first3=|last4=|first4=|last5=|first5=|last6=|first6=|last7=|first7=|last8=|first8=|author-link=Fred Friedberg|author-link2=|access-date=|author-link3=|author-link4=|author-link5=|author-link6=|via=}}</ref> - [https://www.tandfonline.com/doi/abs/10.1080/21641846.2020.1718292 (Abstract)]
*2019, Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade<ref name="Friedberg2019">{{Cite journal | title = Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade | url =https://doi.org/10.1080/21641846.2020.1718292|journal=Fatigue: Biomedicine, Health & Behavior | date = 2020-01-02|issn=2164-1846 | pages = 24–31|volume=8|issue=1|doi=10.1080/21641846.2020.1718292 | first = Fred | last = Friedberg|pmc=|pmid=|quote= | author-link = Fred Friedberg|access-date=|via=}}</ref> - [https://www.tandfonline.com/doi/abs/10.1080/21641846.2020.1718292 (Abstract)]


==Personal experiences ==
==Personal experiences ==
* 2006, [http://angliameaction.org.uk/docs/Inquest-Implications.pdf INQUEST IMPLICATIONS?]<ref name="inquest">{{Cite web|url=http://angliameaction.org.uk/docs/Inquest-Implications.pdf|title=INQUEST IMPLICATIONS?|last=Marshall|first=Eileen|authorlink=Eileen Marshall|last2=Williams|first2=Margaret|authorlink2=Margaret Williams|website =|date=Jun 16, 2006|archive-url=|archive-date=|dead-url=|access-date=2019-02-15}}</ref> According to the letter, the clinicians involved in advising the hospital were psychiatrist [[Simon Wessely]] and psychologist [[Trudie Chalder]].<ref name="inquest" />
* 2006, [http://angliameaction.org.uk/docs/Inquest-Implications.pdf INQUEST IMPLICATIONS?]<ref name="inquest">{{Cite web| url = http://angliameaction.org.uk/docs/Inquest-Implications.pdf | title=INQUEST IMPLICATIONS? | last = Marshall | first = Eileen | authorlink = Eileen Marshall | last2 = Williams | first2 = Margaret | authorlink2 = Margaret Williams | website = | date = Jun 16, 2006|archive-url=|archive-date=|url-status=|access-date=2019-02-15}}</ref> According to the letter, the clinicians involved in advising the hospital were psychiatrist [[Simon Wessely]] and psychologist [[Trudie Chalder]].<ref name="inquest" />


==Talks, interviews and blogs==
==Talks, interviews and blogs==


* 2016, [https://blogs.bmj.com/medical-ethics/2016/12/06/mind-the-gap-ethical-failures-in-the-treatment-of-chronic-fatigue-syndrome/ Mind the Gap: Ethical Failures in the Treatment of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis]<ref name="mindthegap">{{Cite news|url=https://blogs.bmj.com/medical-ethics/2016/12/06/mind-the-gap-ethical-failures-in-the-treatment-of-chronic-fatigue-syndrome/|title=Mind the Gap: Ethical Failures in the Treatment of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis|last=Blease|first=Charlotte|date=Dec 6, 2016|work=BMJ blog|access-date=2018-12-04|archive-url=|archive-date=|dead-url=|last2=Geraghty|first2=Keith|quote=|author-link=Charlotte Blease|author-link2=Keith Geraghty}}</ref> - with [[Keith Geraghty]]
* 2016, [https://blogs.bmj.com/medical-ethics/2016/12/06/mind-the-gap-ethical-failures-in-the-treatment-of-chronic-fatigue-syndrome/ Mind the Gap: Ethical Failures in the Treatment of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis]<ref name="mindthegap">{{Cite news |url =https://blogs.bmj.com/medical-ethics/2016/12/06/mind-the-gap-ethical-failures-in-the-treatment-of-chronic-fatigue-syndrome/ | title = Mind the Gap: Ethical Failures in the Treatment of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis | last = Blease | first = Charlotte | last2 = Geraghty | first2 = Keith|quote= | author-link = Charlotte Blease | authorlink2 = Keith Geraghty | date = Dec 6, 2016|work=BMJ blog|access-date=2018-12-04|archive-url=|archive-date=|url-status=}}</ref> - with [[Keith Geraghty]]


== News, TV and media ==
== News, TV and media ==
Line 126: Line 81:


==See also==
==See also==
*[[Sophia Mirza]]
*[[Sophia Mirza]]
*[[Karina Hansen]]
*[[Karina Hansen]]
* [[Biopsychosocial model]]  
*[[Biopsychosocial model]]
*[[Medical gaslighting]]
*[[Medically unexplained physical symptoms]]
*[[Medically unexplained physical symptoms]]
* [[Stigma and discrimination]]  
*[[Stigma and discrimination]]  
*[[Medical Abuse In ME Sufferers (MAIMES)]]
*[[Medical Abuse In ME Sufferers (MAIMES)]]
* [[The Mental Health Movement: Persecution of Patients?]]
* [[The Mental Health Movement: Persecution of Patients?]]
Line 137: Line 92:


==Learn more==
==Learn more==
*  
* [https://www.margaretwilliams.me/2003/mental-health-movement-persecution-of-patients-select-ctte.pdf The Mental Health Movement: Persecution of Patients?] - [[Malcolm Hooper]], with [[Margaret Williams]]


* [https://www.tymestrust.org/pdfs/falseallegations.pdf False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME)] - Tymes Trust
* [https://www.tymestrust.org/pdfs/falseallegations.pdf False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME)] - Tymes Trust
== References ==
== References ==
<references />
{{Reflist}}
[[Category:Ethics]]
[[Category:Ethics]]

Latest revision as of 10:00, April 2, 2023

Ethical issues and unethical practices have affected patients with myalgic encephalomyelitis/chronic fatigue syndrome since at least the 1950s. In the UK, Dr Sarah Myhill has created the Medical Abuse In ME Sufferers (MAIMES) petition to highlight the medical abuse experienced by many patients with ME/CFS.


Sufferers of ME are often stigmatised and marginalised, as their conditions are not fully recognised by the Government or the medical profession. A number of my constituents suffer from ME. At least two have been bedridden for 30 years because of their condition, and their story is not uncommon.

—Mohammad Yasin, MP,  Appropriate ME Treatment debate (Jan 24, 2019)[1]


Children with ME: The Story of B. Carol Monaghan, Appropriate ME Treatment debate, House of Commons 24th Jan 2019

Patient abuse and mistreatment[edit | edit source]

Experiences commonly reported include:

  • denial of social security/disability benefits for those too ill to work[2][3][4]
  • refusing to accept that a patient is ill, treating a patient as if they are lying or faking symptoms, lazy or unmotivated, and denying treatment[5]
  • medical neglect, including denying basic medical treatment, or tests or investigations on the basis of the fact the person has ME/CFS[3][2][4][6]
  • Medical gaslighting, including physical symptoms of illness being misdiagnosed as mental illness, resulting in denial of medical care or inappropriate treatments, and denial of disability aids, and limited / reduced disability or sickness payments[7][8]
  • forced in-patient mental health treatment in patients without a mental health condition[9][1] as experienced by Sophia Mirza
  • large numbers of children with ME/CFS put on child protection and "at risk" registers and separated from their parents, who are investigated for child abuse and Munchausen Syndrome by Proxy/Fabricated Induced Illness[10]
  • children too ill to attend school have been diagnosed with "Pervasive Refusal Syndrome", or abnormal illness behavior[11]
  • patients are blamed when treatments do not work
  • becoming very angry with patients, in one clinical trial some nurses viewed severely ill patients as "The bastards don't want to get better"[12] ~ Nurse supervisor, FINE trial
  • medical professionals accuse patients of not wanting to recover or "benefitting" from their illness[12]With these people, it isn't that they don't want to get better but if the price is recognising the psychiatric basis of the condition, they'd rather not get better". ~ Sir Simon Wessely[13]
  • patients labelled "resistant to treatment"[12]
  • medical professionals being so convinced that a treatment would work that they accuse patients of not complying with it, or remove their diagnosis and misdiagnosis a psychiatric illness instead, for instance interpreting inability to wash or eat as self-neglect from Depression or Pervasive Refusal Syndrome, or severe gastrointestinal illness causing severe weight loss as anorexia

Unethical policies and practices[edit | edit source]

Refusal of medical care[edit | edit source]

The poor treatment of people with ME/CFS has often widespread because of specific government policies or practices. For example, in 2007 the United Kingdom published a "best practice" guide to diagnosis and treatment which claimed investigating medical symptoms of any kind reported by people with ME/CFS might be harmful to those patients, resulting in the refusal of basic medical tests and harm from additional illnesses that were left untreated as a result.[6] This advice remained in place for over 11 years.

Social care and disability benefits[edit | edit source]

A report from the CFS/ME Observatory project in the UK found that the knowledge, behaviors and attitudes of health and social care staff often led to patients not being diagnosed for years, and as a result struggling to access essential social care, health care or disability benefits. People in the UK identifying as Black, Asian or from ethnic minorities found it even harder to get a diagnosis and appropriate care. Some people reported being incorrectly diagnosed with anxiety or depression while their ME/CFS symptoms were ignored, and offered only antidepressants as a result. The UK social security disability assessment process was described as being unsuitable for assessing ME/CFS.[14]

Prevalence of false child abuse allegations[edit | edit source]

In the United Kingdom, a small survey of children with ME/CFS found that 25% of children had bee a doctor or another professional that their parents/carers were the cause of their illness; some of these had children protection/safeguarding issues raised as a result of their illness.[15] A survey after a 1999 UK documary also revealed that many parents or carers had been suspected or accused of intentionally fabricating their child's illness, 4% of families who responded to the survey reported a parent being labeled as having Munchausen syndrome by proxy (Fabricated Induced Illness).[16]

Research ethics complaints[edit | edit source]

A number of high profile researchers and some journals have faced compliants and investigations for research ethical violations, including:

  • PACE trial researchers for failing to declare their conflicts of interest to patients as part of the "informed consent" process, and failing to declare that the trial was partly funded by the UK's Department for Work and Pensions, which has responsibility for assessing disability entitlement
  • The University of Bristol announced that Professor Esther Crawley is being investigated for using research ethics exemption obtained for a single trial (offering treatment to school children with ME/CFS) for multiple unrelated research publications, including a systematic review of adults' ME/CFS treatment outcomes.[citation needed]
  • Refusing to release anonymous research data from controversial trials for re-analysis, or only allowed selected researchers access to that data, which avoids independent re-analysis or scrutiny, as happened with the PACE trial data. The PACE trial data - including the original primary outcome data - was only released after a lengthy battle and a hearing on front of a judge resulted in the UK's Information Commissioner Office ordering Queen Mary University to release the data under the Freedom of Information Act law.[17]
  • Patient data was stolen during the PACE trial

Lack of informed consent[edit | edit source]

Keith Geraghty has highlighted the lack of informed consent to treatment experienced by many patients with ME/CFS, particularly involving failing to inform patients of previously known potential harms that may result from graded exercise therapy and cognitive behavioral therapy, and how likely these are.[18]

Notable studies[edit | edit source]

  • 2008, Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)—A case study[19] (Abstract)
  • 2017, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer[21] (Full Text)
  • 2017, Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome[9] (Full text)
  • 2018, Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter[4] (Abstract)
  • 2019, Ethical classification of ME/CFS in the United Kingdom[22] (Abstract)
  • 2019, Faces of fatigue: Ethical considerations on the treatment of chronic fatigue syndrome[23] (Abstract)
  • 2019, Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade[24] - (Abstract)

Personal experiences[edit | edit source]

Talks, interviews and blogs[edit | edit source]

News, TV and media[edit | edit source]

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. 1.0 1.1 Hansard | UK Parliament (January 24, 2019). "Appropriate ME Treatment | 24 January 2019 Volume 653". hansard.parliament.uk. Retrieved January 25, 2019.
  2. 2.0 2.1 2.2 Dimmock, Mary; Lazell-Fairman, Matthew (December 2015). "THIRTY YEARS OF DISDAIN: How HHS and a group of psychiatrists Buried Myalgic Encephalomyelitis" (PDF). Retrieved November 5, 2018.
  3. 3.0 3.1 3.2 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.
  4. 4.0 4.1 4.2 Geraghty, Keith J.; Blease, Charlotte (June 21, 2018). "Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter". Disability and Rehabilitation. 41 (25): 3092–3102. doi:10.1080/09638288.2018.1481149. ISSN 0963-8288.
  5. Lapp, Charles W. (2019). "Initiating Care of a Patient With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Frontiers in Pediatrics. 6. doi:10.3389/fped.2018.00415. ISSN 2296-2360.
  6. 6.0 6.1 Forward-ME (2017). "10 year surveillance report consultation comments | NICE CFS/ME guidelines" (PDF). Retrieved February 10, 2019.
  7. Hughes, Brian (March 21, 2019). "If you spend 20 years gaslighting your patients, perhaps you should think twice before accusing *them* of trolling *you*". The Science Bit. Retrieved October 24, 2020.
  8. Mitchell, Natasha (October 22, 2020). "Doctors warn of lasting effects of COVID-19 after struggling to recover from virus". ABC News. Retrieved October 24, 2020.
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