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 (ME) and chronic fatigue syndrome (CFS) often described feeling stigmatized and discriminated against.

The Yuppie flu label
ME was dismissed as "yuppie flu" and even "shirker syndrome" in the 1980s and described as a reaction to the stresses of modern life. Under the label yuppie flu, ME was regarded as only affecting one group in society - young to middle-aged professionals.

Stigma from the media
A number media interviews and newspaper coverage have presented negative views of patients with ME, including representing some reporting legitimate claims through official chanqqnels as harassing, or intimidating researchers described as "vilification" and listed alongside unproven allegations of criminal acts such as sending "death threats".

In other coverage, treatment success rates have been grossly exaggerated, with the controversial graded exercise therapy (GET) referred to as simply "exercise" in headlines rather than a specialist treatment. A BBC report, believed to be heavily influenced by the biased Science Media Centre (SMC), "overstated" and made inaccurate claims that the Dutch FITNET trial could cure "two-thirds" of [British ] children with CFS within 6 months, when the actual figure was under 40%, with those results heavily disputed due to including very broad diagnostic criteria, and the treatment only being available in 10% of the UK.

A number of charities including Invest in ME Research and The ME Association have filed complaints or raised objections, in addition to individual patients. The exaggerated recovery rates and headlines about "exercise" or a talking treatment have encouraged the public to stereotype patients as lazy, simply lacking the willingness to exercise, or as having mental health problems.

Stigma from the family, friends and the public
Patients with ME/CFS may be judged by friends as extremely lazy rather than ill, and become isolated from friends when they are too ill to spend time with others.

Stigma from health professionals
A number of highly influential health professionals have made highly stigmatized, dismissive and offensive comments about patients with ME/CFS, which continues to this day. Many patients in the UK in continue to report that their doctor was either openly skeptical about their ones, or expressed disbelief. Similar experiences have been reported within disability assessments, and by clinicians at a specialist CFS/ME clinic in the UK. In 2019, a UK parliament debate highlighted that the members of the medical profession did not fully recognize ME, which increased the stigma and the marginalization of people with ME.

ME patients have been stereotyped in many ways, including being accused of having negative attitudes towards mental illness and being "anti-psychiatry", however Wood & Wessely (1999) showed that attitudes towards mental illness are no different from those of other patient groups, for example rheumatoid arthritis patients.

Stigma from academic colleagues
Scientists who work on biomedical research or treat patients outside of the psychiatry and exercise focused biopsychosocial model (BPS) 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.

Professors at medical schools report that they have been instructed by their department chairs to stop seeing ME/CFS patients, have been denied promotions due to their ME/CFS research, have received unfounded letters of reprimand, and have been subjected to ethics investigations for using their medical school email and other medical school resources to investigate ME/CFS. A charity offered to donate a scholarship to a medical school, to benefit medical students who study ME/CFS, but the medical school refused the donation because "ME-CFS patients set up an artificial distinction between psychiatric and organic illness, and the school does not wish its students exposed to patients who make such a distinction."

Discrimination
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 "activists", with several mainstream newspapers reporting unfounded accusations that they sent "death threats" to ME/CFS researchers

Effects of stigma
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, or only having trivial symptoms, resulting in denying basic medical treatment and tests, 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 syndrome by proxy
 * children too ill to attend school, or even too ill to eat have been diagnosed with "Pervasive School Refusal Syndrome" or Pervasive Refusal Syndrome, with their health limitations interpreted as a "behavioral" issue

Examples of stigma and discrimination of ME/CFS

 * 2011, The Sun, best selling UK newspaper - Invest in ME Research Complaint
 * By Rod Liddle: "ME, which used to be known as yuppie flu", "stigmatised as malingering mentals", "foaming paranoia" (on the ME Association website)


 * 2011, The Times newspaper - An interview with Professor Simon Wessely Invest in ME Research Complaint
 * By Stefanie Marsh: "Such was the vitriol and the constant ratcheting up of the threats emanating from the fringes that, ten years ago, Professor Wessely chose to give up his research."
 * Untrue: This was 7 months after the PACE trial was published, which Wessely helped design the PACE trial and was a PACE trial center manager for several years, and still researchs ME/CFS
 * Professor Wessely comments "―They‘re (ME activists) not as bad as the animal liberation people ... ―But they‘re just as fanatical. It‘s constant stalking, harassment, attempts at intimidation."


 * 2012, The Sun newspaper, UK ‘Pretend disabled’ really ARE sick
 * By Rod Liddle started with: "My New Year’s resolution for 2012 was to become disabled. Nothing too serious, maybe just a bit of bad luck or one of those newly invented illnesses which make you a bit peaky for decades – fibromyalgia, or M.E."
 * ME Association complaint, Press Complaints Commission response


 * 2014, The BMJ journal rapid response Is Chronic Fatigue Syndrome a meme?
 * By Anthony Collings and David Newton, Essex CFS Service, UK.
 * ME Association complaint, Essex CFS Service apologises


 * 2015, #MEAction - Debunking the myth of the militant minority


 * 2018, Somerset Live (UK) - Bridgwater woman speaks of dealing with M.E. after GP tells her 'It’s not as if you are disabled or anything'


 * 2018, #MEAction - Open letter demands removal of Netflix's "AFFLICTED"
 * ME patients and other disabled people tweet their dismay at Netflix's Afflicted
 * Individuals who were lied to and misrepresented by Netflix’s Afflicted include Jake, Pilar, Jamison, Jake & Bekah, Jill & Janine
 * 2018, Dr Keith Geraghty tweet:
 * "I have written a paper with a colleague at Harvard on whether or not Militancy has been used by researchers to downplay the legitimate concerns of ME/CFS sufferers; {we have FOI case] - awaiting final acceptance - we tackle this important point/issue (hope to see paper out soon)"

Prevalence
A study of 68 ME/CFS patients in the UK in 2001 found that more than half of patients reported that their doctor was either openly skeptical about their ME/CFS symptoms, or appeared disbelieving; similar experiences have been reported within disability assessments by clinicians at a specialist CFS/ME clinic in the UK.

In 2019, a UK parliament debate highlighted that the members of the medical profession did not fully recognize ME, which increased the stigma and the marginalization of people with ME.

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)
 * 2001, Patients' perceptions of medical care in 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)


 * 2006, Pediatric Chronic Fatigue Syndrome and Munchausen-By-Proxy: A Case Study - (Full text)
 * 2007, The Effectiveness of Early Educational Intervention in Improving Future Physicians' Attitudes Regarding CFS/FM (Abstract)


 * 2008, Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)—A case study (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