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 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. 15 October 2016"

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

Notable publications

• 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)
• 2015, Progressive Myalgic Encephalomyelitis (ME) or A New Disease? A Case Report (Full Text)
• 2014, London Criteria for M.E., revised in 2014 (Full Text)
• 2012, Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document (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)
• 2004, Chronic Fatigue Syndrome: Editorial Bias in the British Medical Journal (Abstract)

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.

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

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)

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

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.