About Ellen Goudsmit

 

 

Ellen Goudsmit studied psychology in Reading and Amsterdam, and endocrinology at Leiden Medical School. Unable to pursue a normal career due to disability, she worked pro bono for various charities, summarising the scientific literature in medical updates and fundraising for research. During the 1980s and 1990s, she helped to create greater  awareness of  conditions such as post natal depression and premenstrual syndrome (in the Netherlands) and ME (in the Netherlands and UK).  She also co-founded a number of support groups e.g. the Dutch ME Stichting and the Richmond and Kingston ME Association, as well as the International Federation of ME Associations (IFMEA    ).  She was the first editor of InterAction, the newsletter of the charity now known as Action for ME, and  also wrote a few commissioned articles for scientific publications. When almost totally housebound, Ellen embarked on a course that would lead to a PhD in Health Psychology in 1996*.

The ME Association presented her with a special Award in 1997 and she was elected the first disabled Fellow of the British Psychological Society in 2009.  The latter recognised two main contributions to the field; Ellen was the first person to describe and define the concepts of the psychologisation of illness (see academic review 1991), and pacing for ME (initially noted in the IFMEA Medical Update 1989, see review 2009).

Ellen has also helped to devise research criteria for classic ME (e.g. 2009, see below) and is currently involved in trying to improve the psychological services for housebound patients with neurological diseases. 

Current occupation::             Voluntary work only.

                                            Reviewer various health psychology journals, NIHR etc.

                                            Member of Editorial Board (Journal of Health Psychology)

                                            Press contact for CFS/PMS, PND and disability issues, the British Psychological Society.

 

 

 

Scientific publications 1983 onwards


Books and chapters

  • Functional Disorders of the Menstrual Cycle (co‑editor with Dr. M.G. Brush). Chichester: Wiley 1988.
  • Brush, MG and Goudsmit, EM. General and social considerations in research on menstrual cycle disorders with particular reference to PMS. In Brush, MG and Goudsmit, EM (eds.): Functional Disorders of the Menstrual Cycle. Chichester: Wiley 1988. Pp.1-13.
  • Goudsmit, EM. Psychological aspects of premenstrual symptoms. In Brush, MG and Goudsmit, EM (eds.): Functional Disorders of the Menstrual Cycle. Chichester: Wiley 1988. Pp. 20-26.
  • Goudsmit, EM. Anxiety and Depression in Premenstrual Syndrome. In Spielberger CD, Sarason IG, and Defares PB (eds), Stress and Anxiety, vol. 11. NY: Hemisphere, 1988. Pp. 211-217.
  • Goudsmit, EM. The Psychologisation of illness. In Brostoff J, Challacombe SJ (eds.) Food Allergy and Intolerance. 2002. 2nd Edition. WB Saunders. Pp. 685-693.

Articles (peer reviewed/commissioned)


Articles (in non-peer reviewed publications).

  • Goudsmit, EM. M.E. still misdiagnosed and misunderstood. Women In Medicine Newsletter, 1989, Jan, 8‑9.
  • Goudsmit, EM. Uitputtingsslag rond vermoeidheid. Spiegeloog, 1997, 24, 236, 14-16. (In Dutch).
  • Goudsmit, EM. ME and CFS: why patients and doctors disagree. BSAENM Newsletter, 1998, 7, 1, 8-9.
  • Goudsmit, EM. New research on the second generation. Second Generation Voices, 2000, 15, 20-21.
  • Goudsmit, E. It's medical science, Jim, but not as we know it! The distortion of evidence relating to CFS. AAA Essay Competition, First Prize (Category 2). 2000
  • Goudsmit, EM. Post traumatic stress disorder: genuine illness or convenient excuse? Second Generation Voices, 2001, 18, 3-5.
  • Dancey, CP and Goudsmit, EM. Stress causes IBS? If only it were so simple.Gut Reaction, 2008, 72, 6-7.
  • Goudsmit, E. Dental woes and MCS. The Phoenix. Newsletter of the British Society for Ecological Medicine. 2012, 1 (May), 8.
    ME or CFS: that is the question. Foods Matter, 2012, 71. Online 21st Oct.
    http://www.foodsmatter.com/me_and_cfs/cfs_me_causes_general/articles/goudsmit-me-or-not-me-10-12.html
    Classic ME: the basics. Foods Matter, 2012, 71. Online 21st Oct.
    http://www.foodsmatter.com/me_and_cfs/cfs_me_causes_general/articles/goudsmit-me-classic-10-12.html

Letters

  • Goudsmit, EM. Postnatale depressie. Nederlands Tijdschrift voor Geneeskunde, 1983, 127, 24, 1078.
  • Goudsmit EM, Macintyre A, Sullivan M. Chronic fatigue syndrome. British Journal of General Practice. 1991, 41 (352), 479‑80.
  • Goudsmit EM, Shepherd C. Chronic fatigue syndrome. British Journal of Psychiatry. 1992, 160, 127‑8.
  • Goudsmit EM, Macintyre A. Chronische‑moeheidsyndroom. Nederlands Tijdschrift voor Geneeskunde. 1992, 136, (14), 708‑9.
  • Goudsmit EM. Chronic fatigue syndrome. Distinguish between syndromes... BMJ. 1994, 308, (6939), 1297‑8.
  • Goudsmit EM, Howes S. Cognitive functioning with chronic fatigue. British Journal of Psychiatry. 1995, 167 (6), 818‑9.
  • Goudsmit EM. Graded exercise in chronic fatigue syndrome. Chronic fatigue syndrome is heterogeneous condition. BMJ, 1997, 315, (7113), 948.
  • Goudsmit E. Treating chronic fatigue with exercise. Exercise, and rest, should be tailored to individual needs. BMJ, 1998, 317, (7158), 599.
  • Goudsmit E, Shepherd C. Functional somatic syndromes. Lancet, 1999, 354 (9195), 2078.
  • Goudsmit, E. Chronic fatigue syndrome. A response to Lynch and Clare. Modern Medicine of Ireland, 1999, 29 (7-8), 67-69.
  • Goudsmit E. Chronic fatigue syndrome. British Journal of Psychiatry, 2000, 177, 470.
  • Goudsmit E. Chronic fatigue syndrome. Irish Journal of Psychological Medicine, 2000, 17 (2), 76.
  • Goudsmit E. Functional somatic syndromes. Annals of Internal Medicine, 2000, 132, (4), 328.
  • Goudsmit E. Measuring the quality of trials of treatments for chronic fatigue syndrome. JAMA 2001, 286, 24, 3078-3079.
  • Goudsmit, E. Chronic fatigue syndrome. British Journal of General Practice, 2002, 52, 763.
  • Goudsmit, E. Chronic fatigue syndrome/ME. British Journal of General Practice, 2002, 52, 12, 1023-1024.
  • Goudsmit, EM, Sneddon, P., Shepherd, C and Howes, S. Neuroticism as a consequence of illness. BMJ rapid responses, 2008, 26th February. http://www.bmj.com/cgi/eletters/333/7568/575#191151
  • Goudsmit, EM. Ignorance is not bliss. British Journal of Psychiatry, 2009. eLetter Online 22ndOctober. http://bjp.rcpsych.org/cgi/eletters/195/4/369-a
  • Goudsmit, EM. Study demonstrates that the criteria for CFS remain too vague. BMC Medicine, 2009, 20th November [Epub].
    http://www.biomedcentral.com/1741-7015/7/57/comments#374647
  • Kindlon, T and Goudsmit, EM. Graded exercise for CFS: Too soon to dismiss reports of adverse reactions. Response to Letter to the Editor by Lucy V. Clark and Peter D. White. Journal of Rehabilitation Medicine, 2010, 42, 184. http://jrm.medicaljournals.se/files/pdf/preview/1233.pdf
  • Stouten, B and Goudsmit, EM. Why use cognitive behaviour therapy to reduce fatigue in patients with chronic fatigue syndrome? The role of self-efficacy. Research letter. Psychological Medicine. Accepted 2010. Retracted by us in light of libellous response. Published Bulletin of the IACFS/ME (see articles above).
  • Stouten, B, Goudsmit, EM and Riley, NH. The PACE trial in chronic fatigue syndrome. Lancet, 2011, 377, 1832-1833. Online 17th May. doi:10.1016/S0140-6736(11)60685-5 http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60685-5/fulltext
  • Stouten, B and Goudsmit, EM. How valid is the model behind cognitive behaviour therapy for chronic fatigue syndrome? An evaluation of the additional data from the trial by Prins et al. Bulletin of the IACFS/ME, 2010, 18, 2, 82-89.
    http://www.iacfsme.org/BulletinArchives/tabid/309/Default.aspx

    http://www.iacfsme.org/BULLETINSUMMER2010/tabid/432/Default.aspx
  • Kindlon, T and Goudsmit, EM. Graded exercise for CFS: Too soon to dismiss reports of adverse reactions. Response to Letter to the Editor by Lucy V. Clark and Peter D. White. Journal of Rehabilitation Medicine, 2010, 42, 184.
    http://jrm.medicaljournals.se/article/pdf/10.2340/16501977-0493
  • Stouten, B and Goudsmit, EM. Why use cognitive behaviour therapy to reduce fatigue in patients with chronic fatigue syndrome? The role of self-efficacy. Research letter. Psychological Medicine. Accepted 2010. Retracted by us in light of libellous response. Published Bulletin of the IACFS/ME (see articles above).
  • Stouten, B, Goudsmit, EM and Riley, NH. The PACE trial in chronic fatigue syndrome.
    Lancet, 2011, 377, 1832-1833. Online 17th May. doi:10.1016/S0140-6736(11)60685-5
    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60685-5/fulltext
     

Conference papers

  • Anxiety and depression in premenstrual syndrome. An exploratory study. National Conference on stress, anxiety and psychosomatic disorders. Netherlands Institute for Advanced Study in Humanities and Social Science (NIAS). Holland. 1980
  • Psychological aspects of premenstrual syndrome. Conference on premenstrual syndrome and postnatal depression. University of Leiden. 1982.
  • All in her mind. Stereotypic views and the psychologisation of womenís illness. (Taped contribution). BPS Annual Conference. 1992
  • Has the psychologisation of illness gone too far? Allergy and the Brain. Allergy Research Foundation meeting at the Royal Society of Medicine. 2001

Others

  • Interview in book: Een schouder om op te huilen. Beschuit met Tranen. Postema, J (ed.) Amersfoort: Novella. 1983. 85-92. (chapter in Dutch language about my work on post natal depression in the Netherlands).
  • Goudsmit, E. Coping with emotional distress: a beginner's guide. Commissioned article for the newsletter of the Sussex ME Association. 1999.
  • Goudsmit, EM and Faas, RJE. Depression in myalgic encephalomyelitis and chronic fatigue states; a re-examination of the data. ME Research Online, 2001, 2nd January. http://www.axfordsabode.org.uk/me/melist.htm Also published in a less academic form in the magazine of the ME Association.
  • Goudsmit, E. The Royal Free Epidemic of 1955: Was it really mass hysteria? ME Research Online, 2000, 24th December. http://www.axfordsabode.org.uk/me/melist.htm. Also published in shorter, less academic form in the magazine of the Australian and New Zealand ME Association.
  • Goudsmit, E. The personality of patients with myalgic encephalomyelitis. A replication of a study by McEvedy and Beard. ME Research Online, 2000, 24th December. http://www.axfordsabode.org.uk/me/melist.htm. Also published in a shorter form in the magazine of the ME Association and with additional data in the BMJ, Rapid Responses (as above).
  • Goudsmit, EM., Stouten, B and Howes, S. Editorial bias in the Lancet. ME Research Online, 5th October 2005. http://www.axfordsabode.org.uk/me/melist.htm. See also Chronic fatigue syndrome: editorial bias in the BMJ (JCFS, 2004). Information was initially published in less academic form as: Itís medical science, Jim, but not as we know it! The distortion of evidence relating to CFS. AAA Essay Competition, First Prize (Category 2). 2000.
  • Goudsmit, EM, Stouten, B and Howes, S. Illness intrusiveness in myalgic encephalomyelitis. An exploratory study. ME Research Online, 2007, http://www.axfordsabode.org.uk/me/melist.htm. Shorter version accepted for publication.
  • Goudsmit, E. Factsheet on CBT. Written for the ME support group and available online http://www.axfordsabode.org.uk/me/melist.htm Also selected by Prof. Klimas and colleagues at the IACFS/ME for their website http://www.iacfsme.org/MECFSManagement/tabid/121/Default.aspx

Other articles commenting or analyzing the literature.

  • Book reviews (Lancet, HPU, Psychologist), letters (Psychologist) and articles describing the latest research for publications of patient groups in the UK and elsewhere. Factsheets for Action for ME.

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