Dr Ellen Marianne Goudsmit is a retired health psychologist. Despite being disabled since childhood 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). She has been an advisor to the charity now known as Action for ME, and to the ME Association.
Her published several papers on ME and CFS include the first description of progressive ME, "Progressive Myalgic Encephalomyelitis (ME) or a New Disease? A Case Report." 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".
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. 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."
Letters[edit | edit source]
- 2000, Rapid Response - Functional somatic syndromes
- 2001, Measuring the Quality of Trials of Treatments for Chronic Fatigue Syndrome
- 2002, (Letter) - responding to an editorial by Stanley et al.
- 2004, (Rapid Response) - Please believe psychiatrists with CFS
- 2015, Response to article in the magazine published by the UK charity MCS-Aware
Doctorate thesis[edit | edit source]
Notable publications[edit | edit source]
- 2004, Chronic Fatigue Syndrome: Editorial Bias in the British Medical Journal(Abstract)
- 2009, Learning to cope with chronic illness. Efficacy of a multi-component treatment for people with chronic fatigue syndrome(Abstract)
- 2009, Illness intrusiveness in myalgic encephalomyelitis: an exploratory study(Abstract)
- 2012, Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document(Abstract)
- 2014, London Criteria for M.E., revised in 2014(Full Text)
- 2015, Progressive Myalgic Encephalomyelitis (ME) or A New Disease? A Case Report(Full Text)
- 2017, A Comparison of Case Definitions for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome(Full Text)
- 2017, Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment(Full Text)
Learn more[edit | edit source]
Online presence[edit | edit source]
- PubMed - Ellen Goudsmit
- Ellen Goudsmit blog- "A diary about trying to cope with life as a severely disabled scientist"
- Ellen Goudsmit CV
- ME List
See also[edit | edit source]
References[edit | edit source]
- "Ellen Goudsmit - Curriculum Vitae". www.axfordsabode.org.uk. Retrieved Jan 23, 2019.
- ME Association (Nov 2009). "Dr Ellen Goudsmit joins ME Association panel of advisers". Retrieved Mar 6, 2019.
- 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.
- Goudsmit, Ellen M. "Editorial bias in the Lancet". www.axfordsabode.org.uk. Retrieved Jan 23, 2019.
- http://www.ncbi.nlm.nih.gov/pubmed/?term=goudsmit+e Pubmed Ellen Goudsmit
- 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
- Goudsmit, Ellen (Sep 1, 2002). "-". Br J Gen Pract. 52 (482): 763–764. ISSN 0960-1643. PMID 12236284.
- 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
- ME Association (Oct 15, 2016). "A copy of the 'London Criteria for M.E.' as revised in 2014 | archived here for reference purposes | 15 October 2016". Retrieved Jan 23, 2019.
- Goudsmit, E. (Feb 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?
- Goudsmit, Ellen M. (Dec 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.
- Goudsmit, Ellen (Oct 30, 2011). "Please believe psychiatrists with CFS". BMJ.
- Goudsmit, Ellen M (1993). "All in her mind! Stereotypic views and the psychologisation of women's illness". Health Psychology Update. 12: 28–32.
- 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
- 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
- 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
- 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
- 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" (Sackett et al., 1986).