Ellen Goudsmit

Source: ellengoudsmit.wordpress.com

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 the ME Association.

Dr Goudsmit has written papers detailing her accusation that the British Medical Journal and The Lancet journal had displayed bias towards the psychological model of ME and CFS.

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."

London criteria

Dr. Goudsmit was one of the co-authors of the 1994 and, the updated 2014, London criteria case definition for research.

Letters

• Response to article in the magazine published by the UK charity MCS-Aware

Doctorate thesis

• 1996 - The Psychological Aspects and Management of Chronic Fatigue Syndrome

Journal Publications

• 2017, A Comparison of Case Definitions for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

  Abstract: Many professionals have described the clinical presentation of myalgic encephalomyelitis (ME), but recent efforts have focused on the development of ME criteria that can be reliably applied. The current study compared the symptoms and functioning of individuals who met the newly-developed Institute of Medicine (IOM) clinical criteria to a revised version of the London criteria for ME. While 76% of a sample diagnosed with chronic fatigue syndrome (CFS) met the IOM criteria, 44% met the revised London criteria. The revised London criteria identified patients with greater physical impairment. The results of this study indicate the need for a standard case definition with specific guidelines for operationalization. The application of case definitions has important implications for the number of individuals identified with ME, the pattern of symptoms experienced by these individuals, and the severity of their symptoms and functional limitations. Sample heterogeneity across research studies hinders researchers from replicating findings and impedes the search for biological markers and effective treatments.

• 2017, Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment in Journal of Health Psychology
• 2012, Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document '

  Abstract - Purpose: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition characterized by a number of symptoms which typically worsen following minimal exertion. Various strategies to manage the limited energy levels have been proposed. Of these, pacing has been consistently rated as one of the most helpful in surveys conducted by patient groups. This review is a response to the paucity of the information on pacing in the scientific literature. Method: We describe the principle of pacing and how this can be adapted to meet individual abilities and preferences. A critical evaluation of the research was conducted to ascertain the benefits and limitations of this strategy. Results: Based on various studies, it is proposed that pacing can help to stabilize the condition and avoid post-exertional malaise. Conclusion: Pacing offers practitioners an additional therapeutic option which is acceptable to the majority of patients and can reduce the severity of the exertion-related symptoms of ME/CFS.

• 2009, Learning to cope with chronic illness. Efficacy of a multi-component treatment for people with chronic fatigue syndrome.

  Abstract - Objective: The aim of this study was to determine the efficacy of an out-patient, multi-component programme developed for patients with chronic fatigue syndrome (CFS). Methods: Twenty-two patients were assessed before and after six months of treatment. Findings were compared with 22 individuals on the waiting list. The programme offered medical care as well as information and counselling to help patients to understand, accept and cope with their illness. Results: At six months, there were significant differences between the groups for fatigue, self-efficacy and anxiety. Overall, 82% of the treated patients reported feeling better and 23% had improved to such a degree that they were discharged from the clinic. The gains were maintained at twelve months. Conclusion: This programme was found to be both helpful and acceptable and may provide a useful first-line intervention for many patients with CFS. Practice Implications: Short, pragmatic programmes may be as effective as cognitive-behaviour therapy.

• 2009, Illness intrusiveness in myalgic encephalomyelitis: an exploratory study

  Abstract - This study assessed the relationship between illness intrusiveness, symptoms, disability and depression in patients with myalgic encephalomyelitis (ME). Participants were 16 patients with ME and eight patients with ME plus co-morbid disorders. The patients with co-morbid disorders reported greater illness intrusiveness than the patients with ME alone, but there were no differences between the groups on the other variables. Significant correlations were found between illness intrusiveness on the one hand, and fatigue, cognitive dysfunction, disability and depression, on the other. We conclude that ME is a disabling illness, which has a major impact on various life domains.

• 2004, Chronic Fatigue Syndrome: Editorial Bias in the British Medical Journal

  Abstract - A literature search identified all papers published on chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) in the British Medical Journal between 1995 and 2000. Analysis of the findings revealed a bias towards the views of one school of thought and a lack of papers on the immunological or virological aspects of CFS. This contrasts with the mainstream American journals, which generally covered a much wider range of subjects and views. We examine the arguments for and against covert editorial policies, and summarise the results of discussions with the relevant individuals and organisations.

Learn more

• PACE Trial the Flaws - PDF

Online presence

• PubMed - Ellen Goudsmit
• Twitter
• Ellen Goudsmit blog- "A diary about trying to cope with life as a severely disabled scientist"
• Ellen Goudsmit CV
• ME List

See also

• London criteria

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.

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

cognition Thought processes, including attention, reasoning, and memory.

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

BMJ The BMJ (previously the British Medical Journal) is a weekly peer-reviewed medical journal.

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.

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.

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.