Stigma and discrimination

Stigma is "an attribute that links a person to an undesirable stereotype, leading other people to reduce the bearer from a whole and usual person to a tainted, discounted one." People with myalgic encephalomyelitis and chronic fatigue syndrome often described feeling stigmatized.

Stigma from health professionals
A number of highly influential health professionals have made highly stigmatised, dismissive and offensive comments about patients with ME/CFS, which continues to this day.

Scientists who work on biomedical research or treat patients outside of the psychiatry and exercise focused biopsychosocial model have been denied work in their country's public health care system, portrayed as quacks, anti-science, struggled to get research funding or lab time and been isolated and ostracized by their peers.  Doctors, researchers and other health professionals who have called for controversial research or review articles to be retracted (withdrawn) on the grounds of not meeting adequate scientific standards have been labeled "activists" regardless of the scientific reasons they gave, the field they work in or their personal history.

Effects of stigma
Blease and Geraghty (2018) found that "medical authorities" used "widespread negative stereotyping of patients" and acted to marginalize and exclude patient voices, which created "epistemic injustice". For instance, patients who challenged the views or actions of medical authorities were labeled "militant" and labeled "activists".

Stigma has resulted in patients being treated as
 * lazy or work shy, resulting in denial of disability benefits and rejection from society and family
 * hypochondriacs
 * not ill, including denying basic medical treatment and denial of funding for medical research
 * undeserving of medical care
 * mentally ill, resulting in denial of medical care and disability aids, and limited / reduced disability or sickness payments
 * dangerous, threatening and mentally unstable
 * resistant to treatment, resulting in forced in-patient psychiatric care (including in children)
 * children with ME/CFS have been put on child protection and "at risk" registers and separated from their parents, who are investigated for child abuse and Munchausen's by Proxy
 * children too ill to attend school have been diagnosed with "Pervasive School Refusal Syndrome"

Notable studies

 * 1982, Suffering and the Social Construction of Illness: The Delegitimation of Illness Experience in Chronic Fatigue Syndrome | (abstract)
 * 1999, Stigma and Chronic Fatigue Syndrome (Abstract)
 * 2001, Attitudes Regarding Chronic Fatigue Syndrome: The Importance of a Name (Abstract)
 * 2001, Gender biases underlying the social construction of illness states: The case of chronic fatigue syndrome (Abstract)
 * 2001, Measuring Attributions About Chronic Fatigue Syndrome (Abstract)
 * 2001, Assessing attitudes toward new names for chronic fatigue syndrome (Abstract)
 * 2002, Women's experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia.
 * 2004, Stigma and chronic fatigue syndrome: Surveying a name change (Abstract, full text downloadable)
 * 2007, The Effectiveness of Early Educational Intervention in Improving Future Physicians' Attitudes Regarding CFS/FM (Abstract)
 * 2016, Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents’ Experiences
 * 2016, Educational Priorities for Healthcare Providers and Name Suggestions for Chronic Fatigue Syndrome: Including the Patient Voice (Full Text)
 * 2017, Research Volunteers’ Attitudes Toward Chronic Fatigue Syndrome and Myalgic Encephalomyelitis (Abstract)
 * 2017, Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome | (Full text)
 * 2018, Are ME/CFS Patient Organizations "Militant"? : Patient Protest in a Medical Controversy. (Abstract)
 * 2018, Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter (Abstract)
 * 2018, Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome (Abstract)
 * 2018, A content analysis of chronic fatigue syndrome and myalgic encephalomyelitis in the news from 1987 to 2013 (Abstract)
 * 2018, Stigma in Myalgic Encephalomyelitis and its association with functioning (Abstract)

Learn more

 * 2015, THIRTY YEARS OF DISDAIN: How HHS and A Group of Psychiatrists Buried Myalgic Encephalomyelitis