Ellen Goudsmit

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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 (ME), and chronic fatigue syndrome (CFS).[1] She has been an advisor to the charity now known as Action for ME, and to the ME Association.[2]

Dr Goudsmit has written papers detailing her accusations that the British Medical Journal[3] and The Lancet journal[4] had displayed bias in favor of the psychological model of ME and CFS.

Her published several papers on ME and CFS[5] include the first description of progressive ME, "Progressive Myalgic Encephalomyelitis (ME) or a New Disease? A Case Report."[6] She has also been very critical of 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".[7]

London criteria[edit | edit source]

Dr. Goudsmit was one of the co-authors of the London criteria for ME, along with Dr. Elizabeth Dowsett, Dr. Anne Macintyre, and Dr. Charles Shepherd.[8] 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."[9]

Letters[edit | edit source]

Doctorate thesis[edit | edit source]

Notable publications[edit | edit source]

  • 1991, All in the mind? The Psychologisation of Illness[13] - published in the Bulletin of the British Psychological Society

Learn more[edit | edit source]

Online presence[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. ↑ "Ellen Goudsmit - Curriculum Vitae". axfordsabode.org.uk. Retrieved January 23, 2019.
  2. ↑ ME Association (November 2009). "Dr Ellen Goudsmit joins ME Association panel of advisers". Retrieved March 6, 2019.
  3. ↑ 3.0 3.1 Goudsmit, Ellen; Stouten, Bart (2004). "Editorial Bias in the British Medical Journal". Journal of Chronic Fatigue Syndrome. 12 (4): 47–59. doi:10.1300/J092v12n04_05.
  4. ↑ Goudsmit, Ellen M. "Editorial bias in the Lancet". axfordsabode.org.uk. Retrieved January 23, 2019.
  5. ↑ pubmeddev. "goudsmit e - PubMed - NCBI". ncbi.nlm.nih.gov. Retrieved November 14, 2019.
  6. ↑ 6.0 6.1 Howes, Sandra; Goudsmit, Ellen M (2015), "Progressive Myalgic Encephalomyelitis (ME) or A New Disease? A Case Report" (PDF), Phys Med Rehabil Int, 2 (6): 1052
  7. ↑ 7.0 7.1 Goudsmit, Ellen (September 1, 2002). "-". Br J Gen Pract. 52 (482): 763–764. ISSN 0960-1643. PMID 12236284.
  8. ↑ 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
  9. ↑ 9.0 9.1 ME Association (October 15, 2016). "A copy of the 'London Criteria for M.E.' as revised in 2014 | archived here for reference purposes | 15 October 2016". Retrieved January 23, 2019.
  10. ↑ Goudsmit, E. (February 15, 2000). "Functional somatic syndromes". Annals of Internal Medicine. 132 (4): 328. ISSN 0003-4819. PMID 10681294. 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.
    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?
  11. ↑ Goudsmit, Ellen M. (December 26, 2001). "Measuring the Quality of Trials of Treatments for Chronic Fatigue Syndrome". JAMA. 286 (24): 3078–3079. doi:10.1001/jama.286.24.3075. ISSN 0098-7484.
  12. ↑ Goudsmit, Ellen (October 30, 2011). "Please believe psychiatrists with CFS". BMJ.
  13. ↑ Goudsmit, EM; Gadd, R (1991). "All in the mind? The Psychologisation of Illness". The Psychologist. 4: 449–453.
  14. ↑ Goudsmit, Ellen M (1993). "All in her mind! Stereotypic views and the psychologisation of women's illness". Health Psychology Update. 12: 28–32.
  15. ↑ Goudsmit, Ellen M (1994). "All in her mind! Stereotypic views and the psychologisation of women's illness". In Wilkinson, S; Kitzinger, C (eds.). Women and Health. Feminist perspectives on the past and present. Gender and society : feminist perspectives on the past and present. London: Taylor and Francis. pp. 7–12.
  16. ↑ Goudsmit, Ellen M; Ho-Yen, Darrel O.; Dancey, Christine P. (2009), "Learning to cope with chronic illness. Efficacy of a multi-component treatment for people with chronic fatigue syndrome.", Patient Education & Counseling, 77 (2): 231-6, doi:10.1016/j.pec.2009.05.015
  17. ↑ Goudsmit, Ellen M; Stouten, Bart; Dancey, Christine P. (2009), "Illness intrusiveness in myalgic encephalomyelitis: an exploratory study.", J Health Psychol, 14 (2): 215-21, doi:10.1177/1359105308100205
  18. ↑ Goudsmit, Ellen M; Nijs, Jo; Jason, Leonard A; Wallman, Karen E (2012), "Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document", Disability and Rehabilitation, 34 (13): 1140-7, doi:10.3109/09638288.2011.635746
  19. ↑ Sunnquist, Madison; Jason, Leonard; Nehrke, Pamela; Goudsmit, Ellen (2017), "A Comparison of Case Definitions for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome", Journal of Chronic Diseases and Management, 2 (2): 1013, PMID 29104961
  20. ↑ Goudsmit, Ellen M; Howes, Sandra (2017), "Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment", J Health Psychol, 22 (9): 1159-1167, doi:10.1177/1359105317707216

Bias in research is "a systematic deviation of an observation from the true clinical state".[1] (Learn more: me-pedia.org)

bias Bias in research is "a systematic deviation of an observation from the true clinical state". (Learn more: me-pedia.org)

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

bias Bias in research is "a systematic deviation of an observation from the true clinical state". (Learn more: me-pedia.org)

pacing The practice of staying within one's "energy envelope" or personal limit by combining periods of activity with periods of rest or avoiding exerting beyond a certain level. ME/CFS patients use pacing to avoid or reduce post-exertional malaise (PEM). Some patients use a heart rate monitor to help with pacing.

chronic disease a disease or condition that usually lasts for 3 months or longer and may get worse over time. Chronic diseases are long-term (typically incurable and requiring long-term management) but are not necessarily severe.

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