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Ellen Goudsmit
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{{NeedsImage}}Dr '''Ellen Marianne Goudsmit''' is a retired [[health psychologist]]. Despite being disabled since childhood (leukodystrophy) and at times, housebound, she has worked to create greater awareness of conditions such as postnatal [[depression]], premenstrual syndrome, [[myalgic encephalomyelitis]] ([[myalgic encephalomyelitis|ME]]), and [[chronic fatigue syndrome]] ([[Chronic fatigue syndrome|CFS]]).<ref>{{Cite web | url = http://www.axfordsabode.org.uk/me/ellen-cv.htm | title = Ellen Goudsmit - Curriculum Vitae | website = axfordsabode.org.uk|access-date=2019-01-23}}</ref> She has been an advisor to the charity now known as [[Action for ME]], and to the [[ME Association]].<ref>{{Cite web | url = https://www.meassociation.org.uk/2009/11/dr-ellen-goudsmit-joins-me-association-panel-of-advisers/ | title = Dr Ellen Goudsmit joins ME Association panel of advisers | last = ME Association | first = | authorlink = ME Association | date = Nov 2009 | website = |language=en|archive-url=|archive-date=|url-status=|access-date=2019-03-06}}</ref> Dr Goudsmit has written papers detailing her accusations that the ''[[British Medical Journal]]''<ref name="Goudsmit2004">{{Cite journal | last = Goudsmit | first = Ellen | author-link = Ellen Goudsmit | last2 = Stouten | first2 = Bart | authorlink2 = Bart Stouten | date = 2004 | title = Editorial Bias in the British Medical Journal| url = https://doi.org/10.1300/J092v12n04_05|journal=Journal of Chronic Fatigue Syndrome|volume=12|issue=4 | pages = 47-59|doi=10.1300/J092v12n04_05|quote=|via=}}</ref> and ''[[The Lancet]]'' journal<ref>{{Cite web | url = http://www.axfordsabode.org.uk/me/lanbias1.htm | title = Editorial bias in the Lancet | website = axfordsabode.org.uk|access-date=2019-01-23 | date = | last = Goudsmit | first = Ellen M. | authorlink = Ellen Goudsmit|archive-url=|archive-date=|url-status=}}</ref> had displayed bias in favor of the psychological model of ME and CFS. Her published several papers on ME and CFS<ref>{{Cite web | url = https://www.ncbi.nlm.nih.gov/pubmed/?term=goudsmit+e | title = goudsmit e - PubMed - NCBI | last = pubmeddev | website = ncbi.nlm.nih.gov|language=en|access-date=2019-11-14}}</ref> include the first description of progressive [[myalgic encephalomyelitis|ME]], "Progressive Myalgic Encephalomyelitis (ME) or a New Disease? A Case Report."<ref name="Howes, 2015" /> She has also been very critical of [[Psychologization|psychologizing]]: the attempts to treat ME/CFS as symptoms without any physical cause, for example by assuming symptoms are the result of a misinterpretation of "normal functioning".<ref name=":2">{{Cite journal | last = Goudsmit | first = Ellen | author-link = Ellen Goudsmit | date = Sep 1, 2002 | title = -| url = https://bjgp.org/content/52/482/763|journal=Br J Gen Pract|language=en|volume=52|issue=482 | pages = 763–764|issn=0960-1643|pmid=12236284|quote=|via=}}</ref> ==[[London criteria]]== Dr. Goudsmit was one of the co-authors of the [[London criteria]] for [[Myalgic encephalomyelitis|ME]], along with Dr. [[Elizabeth Dowsett]], Dr. [[Anne Macintyre]], and Dr. [[Charles Shepherd]].<ref>EG Dowsett, E Goudsmit, A Macintyre, C Shepherd, et al. The 'London' criteria. Diagnostic criteria for the selection of subjects for research into ME/PVFS</ref> These were published by [[Action for ME]] (then ME Action) for use by researchers funded by the charity. An incomplete, edited copy by an unknown person was later published in the 1994 [[Westcare]] report and has frequently been assumed to be the original, for example, in articles on the [[PACE trial]]. To avoid confusion, these are now referred to as the 'Westcare criteria'. The first version of the revised London criteria was published in Health Psychology Update, 2009. The text (with additional references) is available on the [[ME Association]] website. "A copy of the ‘London Criteria for M.E.’ as revised in 2014 archived here for reference purposes."<ref name=":1">{{Cite web | url = https://www.meassociation.org.uk/2016/10/a-copy-of-the-london-criteria-as-revised-in-2014-archived-here-for-reference-purposes-15-october-2016/ | title = A copy of the ‘London Criteria for M.E.’ as revised in 2014 {{!}} archived here for reference purposes {{!}} 15 October 2016 | last = ME Association | first = | authorlink = ME Association | date = Oct 15, 2016 | website = |language=en-GB|archive-url=|archive-date=Oct 15, 2016|url-status=|access-date=2019-01-23}}</ref> ==Letters== *2000, Rapid Response - [[pubmed:10681294|Functional somatic syndromes]]<ref>{{Cite journal | last = Goudsmit | first = E. | author-link = Ellen Goudsmit | date = Feb 15, 2000 | title = Functional somatic syndromes |url =https://www.ncbi.nlm.nih.gov/pubmed/10681294|journal=[[Annals of Internal Medicine]]|volume=132|issue=4 | pages = 328|issn=0003-4819|pmid=10681294|quote=The authors’ discussion of the chronic fatigue syndrome was highly selective and clearly aimed at supporting the authors’ hypothesis. When I searched MEDLINE, I found little evidence for the alleged link between chronic fatigue syndrome and incorrect attributions, symptom amplification, and the other psychosocial factors mentioned in the article (5). In fact, many of the arguments seemed to rely on generalizations, oversimplification, and a theory-led blindness to individual differences. <br >Given the reputation of the journal, I was surprised that this article was published in this form. For instance, the authors were allowed to present opinions as facts, to refer to other reviews rather than the research, and to ignore the many studies that undermined their hypothesis. Would such obvious bias be acceptable in obstetrics or oncology? If this article was subjected to peer review, the review wasn’t very rigorous: Those involved either were not familiar with the subject or shared the authors’ prejudices. Whatever the reason, the authors’ lack of objectivity resulted in the publication of a poorly researched article that misrepresented the research and perpetuated myths. What happened to evidence-based medicine?|via=}}</ref> *2001, [https://jamanetwork.com/journals/jama/fullarticle/1031656 Measuring the Quality of Trials of Treatments for Chronic Fatigue Syndrome]<ref>{{Cite journal | last = Goudsmit | first = Ellen M. | author-link = Ellen Goudsmit | date = 2001-12-26 | title = Measuring the Quality of Trials of Treatments for Chronic Fatigue Syndrome | url =https://jamanetwork.com/journals/jama/fullarticle/1031656|journal=JAMA|language=en|volume=286|issue=24 | pages = 3078–3079|doi=10.1001/jama.286.24.3075|issn=0098-7484|quote=|via=}}</ref> *2002, [https://bjgp.org/content/52/482/763 (Letter)] - responding to an editorial by Stanley et al.<ref name=":2" /> *2004, (Rapid Response) - [https://www.bmj.com/rapid-response/2011/10/30/please-believe-psychiatrists-cfs Please believe psychiatrists with CFS]<ref>{{Cite journal | last = Goudsmit | first = Ellen | author-link = Ellen Goudsmit | date = Oct 30, 2011 | title = Please believe psychiatrists with CFS| url = https://www.bmj.com/rapid-response/2011/10/30/please-believe-psychiatrists-cfs|journal=[[BMJ]]|language=en|volume=|issue=| pages=|quote=|via=}}</ref> *2015, [http://forums.phoenixrising.me/index.php?threads/response-to-article-re-pace.41779/ Response to article in the magazine published by the UK charity MCS-Aware] ==Doctorate thesis== *1996 - [[Media:Goudsmit Thesis.pdf| The Psychological Aspects and Management of Chronic Fatigue Syndrome]] ==Notable publications== *1991, All in the mind? The Psychologisation of Illness<ref name="Goudsmit1991">{{Cite journal | last = Goudsmit | first = EM | author-link = Ellen Goudsmit | last2 = Gadd | first2 = R | authorlink2 = | date = 1991 | title = All in the mind? The Psychologisation of Illness |url =|journal=The Psychologist|volume=4|issue= | pages = 449-453|doi=|pmc=|pmid=|access-date=|quote=|via=}}</ref> - published in the Bulletin of the British Psychological Society *1993, All in her mind! Stereotypic views and the [[Psychologization]] of women's illness<ref name="Allinhermind">{{Cite journal | journal = Health Psychology Update | url =https://books.google.co.uk/books?hl=en&lr=&id=E1afUMVG0VEC&oi=fnd&pg=PA7 | title = All in her mind! Stereotypic views and the psychologisation of women's illness | last = Goudsmit | first = Ellen M | author-link = Ellen Goudsmit | date = 1993|volume=12 | pages = 28-32|language=en|quote=}}</ref><ref name="AllinhermindCh">{{Cite book |chapter-url=https://books.google.co.uk/books?hl=en&lr=&id=E1afUMVG0VEC&oi=fnd&pg=PA7|chapter=All in her mind! Stereotypic views and the psychologisation of women's illness | last = Goudsmit | first = Ellen M | author-link = Ellen Goudsmit | date = 1994| publisher = Taylor and Francis|isbn=|editor-first = S|editor-last = Wilkinson|editor-first2 = C|editor-last2 = Kitzinger|location=London | pages = 7-12|language=en | title = Women and Health|series=Feminist perspectives on the past and present. Gender and society : feminist perspectives on the past and present.|quote=}}</ref> [https://books.google.co.uk/books?hl=en&lr=&id=E1afUMVG0VEC&oi=fnd&pg=PA7 (Full text)] *2004, [[Chronic Fatigue Syndrome]]: Editorial Bias in the ''[[British Medical Journal]]''<ref name="Goudsmit2004" /> ''[https://www.tandfonline.com/doi/abs/10.1300/J092v12n04_05 (Abstract)]'' *2009, Learning to cope with chronic illness. Efficacy of a multi-component treatment for people with [[chronic fatigue syndrome]]<ref name="Goudsmit, 2009" /> [https://www.ncbi.nlm.nih.gov/pubmed/19576714 (Abstract)] *2009, Illness intrusiveness in [[myalgic encephalomyelitis]]: an exploratory study<ref name="Goudsmit, EM, 2009" /> [http://journals.sagepub.com/doi/abs/10.1177/1359105308100205 (Abstract)] *2012, [[Pacing]] as a strategy to improve energy management in [[ME/CFS|myalgic encephalomyelitis/chronic fatigue syndrome]]: a consensus document<ref name="Goudsmit, 2012" /> [https://www.ncbi.nlm.nih.gov/pubmed/22181560 (Abstract)] *2014, [[London criteria|London Criteria]] for M.E., revised in 2014<ref name=":1" /> [http://www.meassociation.org.uk/2016/10/a-copy-of-the-london-criteria-as-revised-in-2014-archived-here-for-reference-purposes-15-october-2016. (Full Text)] *2015, Progressive Myalgic Encephalomyelitis (ME) or A New Disease? A Case Report<ref name="Howes, 2015" /> [http://austinpublishinggroup.com/physical-medicine/download.php?file=fulltext/pmr-v2-id1052.pdf (Full Text)] *2017, A Comparison of [[Definitions of ME and CFS|Case Definitions]] for [[Myalgic Encephalomyelitis]] and [[Chronic Fatigue Syndrome]]<ref name="Sunnquist, 2017" /> [https://www.jscimedcentral.com/ChronicDiseases/chronicdiseases-2-1013.pdf (Full Text)] *2017, Bias, misleading information and lack of respect for alternative views have distorted perceptions of [[ME/CFS|myalgic encephalomyelitis/chronic fatigue syndrome]] and its treatment<ref name="Goudsmit, 2017" /> [http://journals.sagepub.com/doi/full/10.1177/1359105317707216 (Full Text)] ==Learn more== *[http://www.axfordsabode.org.uk/me/ME-PDF/PACE%20trial%20the%20flaws.pdf PACE Trial the Flaws - PDF] ==Online presence== *[https://www.ncbi.nlm.nih.gov/pubmed/?term=Goudsmit+EM%5BAuthor%5D PubMed - Ellen Goudsmit] *[https://twitter.com/EllenGoudsmit Twitter] *[https://ellengoudsmit.wordpress.com/ Ellen Goudsmit blog- "A diary about trying to cope with life as a severely disabled scientist"] *[http://www.axfordsabode.org.uk/me/ellen-cv.htm Ellen Goudsmit CV] *[http://www.axfordsabode.org.uk/me/melist.htm ME List] ==See also== *[[London criteria]] *[[Biopsychosocial model]] *[[Ethical issues]] *[[Stigma and discrimination]] ==References== <references> <ref name="Goudsmit, 2009">{{Citation | last1 = Goudsmit | first1 = Ellen M | author-link1 = Ellen Goudsmit | last2 = Ho-Yen | first2 = Darrel O. | authorlink2 = | last3 = Dancey | first3 = Christine P. | authorlink3 = | title = Learning to cope with chronic illness. Efficacy of a multi-component treatment for people with chronic fatigue syndrome. | journal = Patient Education & Counseling | volume = 77 | issue = 2 | page = 231-6 | date = 2009 | pmid = | doi = 10.1016/j.pec.2009.05.015 }}</ref> <ref name="Goudsmit, 2012">{{Citation | last1 = Goudsmit | first1 = Ellen M | author-link1 = Ellen Goudsmit | last2 = Nijs | first2 = Jo | authorlink2 = Jo Nijs | last3 = Jason | first3 = Leonard A | authorlink3 = Leonard Jason | last4 = Wallman | first4 = Karen E | authorlink4 = | title = Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document | journal = Disability and Rehabilitation | volume = 34 | issue = 13 | page = 1140-7 | date = 2012 | pmid = | doi = 10.3109/09638288.2011.635746 }}</ref> <ref name="Goudsmit, EM, 2009">{{Citation | last1 = Goudsmit | first1 = Ellen M | author-link1 = Ellen Goudsmit | last2 = Stouten | first2 = Bart| authorlink2 = | last3 = Dancey | first3 = Christine P. | authorlink3 = | title = Illness intrusiveness in myalgic encephalomyelitis: an exploratory study. | journal = J Health Psychol | volume = 14 | issue = 2 | page = 215-21 | date = 2009 | pmid = | doi = 10.1177/1359105308100205 }}</ref> <ref name="Goudsmit, 2017">{{Citation | last1 = Goudsmit | first1 = Ellen M | author-link1 = Ellen Goudsmit | last2 = Howes | first2 = Sandra | authorlink2 = Sandra Howes | title = Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment | journal = J Health Psychol | volume = 22 | issue = 9 | page = 1159-1167 | date = 2017 | pmid = | doi = 10.1177/1359105317707216 }}</ref> <ref name="Howes, 2015">{{Citation | last1 = Howes | first1 = Sandra | author-link1 = Sandra Howes | last2 = Goudsmit | first2 = Ellen M | authorlink2 = Ellen Goudsmit | title = Progressive Myalgic Encephalomyelitis (ME) or A New Disease? A Case Report | journal = Phys Med Rehabil Int | volume = 2 | issue = 6 | page = 1052 | date = 2015 | pmid = | url = http://austinpublishinggroup.com/physical-medicine/download.php?file=fulltext/pmr-v2-id1052.pdf }}</ref> <ref name="Sunnquist, 2017">{{Citation | last1 = Sunnquist | first1 = Madison | author-link1 = Madison Sunnquist | last2 = Jason | first2 = Leonard | authorlink2 = Leonard Jason | last3 = Nehrke | first3 = Pamela | authorlink3 = | last4 = Goudsmit | first4 = Ellen | authorlink4 = Ellen Goudsmit | title = A Comparison of Case Definitions for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome | journal = Journal of Chronic Diseases and Management | volume = 2 | issue = 2 | page = 1013 | date = 2017 | pmid = 29104961 | doi = }}</ref> </references> [[Category:Psychological paradigm critics]] [[Category:Authors]] [[Category: Advocates or allies]] [[Category: British advocates or allies]] [[Category:PACE trial critics]]
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