GRSJ224/chronic fatigue syndrome in the media

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Chronic Fatigue Syndrome (CFS), also referred to as myalgic encephalomyelitis (ME), is often under-represented or completely absent from mainstream media. With a history that has led to society not taking seriously the claims of those suffering with CFS/ME, this is an area that is not widely featured in popular media forms. A few documentary films were produced between 2016 - 2017 which address the experience of those who are affected by CFS/ME and as a result, a greater awareness about the illness has begun to emerge.

Documentary Films

Title Year Released IMDb Rating
Unrest 2017 7.7
Gaga: Five Foot Two 2017 7.1
What About ME? 2016 8.3
  • Unrest gives a very insightful account into what it is like for people who are suffering from CFS/ME and its portrayal is one of compassion and integrity. Jennifer Brea produced and directed the documentary which follows the journey of her own experience with chronic illness as she searches for answers and connects with others around the world who are also suffering. When doctors tell Jennifer Brea that it's "all in her head," she picks up her camera as an act of defiance and brings the viewer into a hidden world of millions that medicine abandoned.[1]
  • Gaga: Five Foot Two follows American singer-songwriter Lady Gaga behind-the-scenes as she produces and releases her fifth album Joanne. The film includes footage entailing her painful journey battling with Fibromyalgia which is a chronic condition of widespread pain and profound fatigue. Many people who have CFS/ME may also have a component of fibromyalgia.[2]
  • What About ME? tracks the story of a journalist afflicted with CFS/ME as they embark on a quest to find out why the CDC and the medical system have neglected the disease and left millions sidelined from life.

Television Series

Afflicted is an American documentary television series released in 2018 on Netflix that follows the journey of seven people who are suffering from various chronic illnesses and diseases. The series received a lot of backlash in its portrayal of the participants in the series, depicting them in a way that implied that the illnesses were psychosomatic or psychiatric disorders. According to some of the participants in the series, there were omissions in the film's narrative leaving out information on treatment that was being prescribed to participants or any findings on the scientific background of CFS/ME research.[3]

Online Media

Filmmaker Jennifer Brea shares her experience of battling with ME through a TED talk "What happens when you have a disease that doctors can't diagnose". Jennifer wrote and directed the documentary Unrest.

CFS/ME Information

The following information was obtained from studies done in the United Kingdom.[4]

Worldwide, it is estimated that between 17-24 million people have CFS/ME[5]. Women are two to four more times likely than men to be affected by CF/ME. Symptoms of CFS/ME can include extreme fatigue, muscle weakness, chronic pain, post-exertional malaise, problems with short-term memory, difficulty concentrating, ongoing flu-like symptoms, feeling dizzy and experiencing gastro-intestinal symptoms.[4] The onset of CFS/ME can be gradual or sudden and it can often be triggered by a viral infection or a flu-like illness.[6] There is presently no known cause for CFS/ME.

History

Reports of illnesses resembling CFS/ME date back to the 19th century when many women reported symptoms of extreme fatigue, dizziness, anxiety and depression and the concept of neurasthenia was introduced by neurologist George Miller Beard.[7] The initial perception around these undiagnosed illnesses was that they were psychosomatic or psychiatric disorders and the women who were affected were deemed to have a form of hysteria.[8] Further reports were noted in 1934, when outbreaks of a previously unknown illness began to be recorded by doctors in a specific epidemic occurring in Los Angeles.[9] Similarly in the 1950s, an outbreak occurred at the Royal Free Hospital in London and symptoms resembling what we now know to be CFS/ME were reported.[10] These recorded epidemics were the last of the larger outbreaks and nowadays it is more common for sporadic cases to be identified.[2] During the 1980s, the term Chronic Fatigue Syndrome (CFS) came into use.[4] There is still a certain level of stigma attached to the perception of CFS/ME and often people who are affected aren't believed by close friends and family and isolation can be common amongst those who are suffering.

Statistics

The following list of statistics was obtained from studies done in the United Kingdom.[4]

  • All age groups and social classes are affected – although it is rare for patients below the age of seven and above the age of 60 to have a new diagnosis of ME/CFS.
  • The most common age of onset is between 13 and 15 in children and between early twenties and mid-forties in adults.
  • Older people with CFS/ME demonstrate a disease phenotype very different from younger people.
  • Female:male predominance (around 2:1).
  • CFS/ME has been reported worldwide and across ethnicities.

Anxiety & Depression

About half of people with CFS/ME develop depression in the months and years after their illness begins.[11] While available evidence indicates that CFS is a physical illness (and not psychiatric as was once thought), it can often lead to the onset of depression in many people. It is also very common for people who have CFS/ME to experience anxiety and the origin of these symptoms has been found in certain studies to be from physiological origins rather than emotional or psychiatric factors.[12] Depression differs from CFS/ME in that it does not start suddenly with an ‘infectious-like’ illness, as does CFS/ME in most cases.[13]

Representation of Women in Mainstream Media

Women are currently under-represented in mainstream film according to the study "It's a Man's (Celluloid) World" and only 35% of films in 2018 included 10 or more female speaking roles.[14] Findings from research compiled at the Geena Davis Institute on Gender in Media also show that male characters receive twice as much screen time and speak twice as often compared to female characters in films.[15] All of these factors play a part in the under-representation of women and the absence of female-led stories in mainstream media.

Women's Health in Media

The media (in particular film, but also television, magazines, newspapers, and, more recently, the internet) has been related in many ways to the development of medicine and public health and the way in which illness and disease are portrayed.[16] Women's Health is an area that isn't widely covered in popular media forms and there is a level of pressure for female characters to be portrayed in often unrealistic ways regarding their lifestyle and appearance.[15] As a result, stories which include narratives of women facing health challenges or battling illness are not often represented in popular media.

References

  1. ↑ "Unrest". www.unrest.film. Retrieved 29 November 2019.
  2. ↑ 2.0 2.1 "What is ME?". www.meassociation.org.uk. Retrieved 29 November 2019.
  3. ↑ Birch, Jenna (September 2018). "Netflix's 'Afflicted' And The Constant Misunderstanding Around Chronic Illness". Huffington Post.
  4. ↑ 4.0 4.1 4.2 4.3 "What you need to know about ME" (PDF). www.meassociation.org.uk. June 2019.
  5. ↑ "How Many People Have ME/CFS". www.ammes.org. Retrieved November 29, 2019.
  6. ↑ Boffey, Philip M (Jul 28, 1987). "Fatigue 'Virus' Has Experts More Baffled And Skeptical Than Ever". The New York Times. Retrieved 29 November 2019.
  7. ↑ Beard, George (April 1869). "Neurasthenia, or Nervous Exhaustion". Boston Medical and Surgical Journal. Vol III. - No. 13.: 1–5 – via Zenodo.
  8. ↑ McEvedy, CP (January 1970). "Concept of Benign Myalgic Encephalomyelitis". British Medical Journal. 1(5687): 11–15 – via National Center for Biotechnology Information.
  9. ↑ Acheson, E.D. (April 1959). "The Clinical Syndrome Variously Called Benign Myalgic Encephalomyelitis, Iceland disease and epidemic neuromyasthenia" (PDF). American Journal of Medicine. Vol. 26, Issue 4: 569–595 – via Science Direct.
  10. ↑ Mandal, Ananya (February 2019). "Chronic Fatigue Syndrome History". www.news-medical.net.
  11. ↑ "Chronic Fatigue Syndrome - What Is It?". www.health.harvard.edu. Retrieved 29 November 2019.
  12. ↑ Johnson, Cort (10 December 2016). "The Anxiety Question in Chronic Fatigue Syndrome and Fibromyalgia: Is the Autonomic Nervous System to Blame?". www.healthrising.org. Retrieved 29 November 2019.
  13. ↑ Bock, Gregory, and Whelan, Julie (1993). Chronic Fatigue Syndrome. Chichester, New York: Wiley. p. 51. ISBN 0471936189.
  14. ↑ Michallon, Clémence (February 2019). "Representation of women in films is getting worse, new study reveals".
  15. ↑ 15.0 15.1 Lee, Bruce Y (March 2018). "How Media Portrayal Affects Women, And What Geena Davis Is Doing About It". Forbes.
  16. ↑ Hooker, Claire, and Hans, Pols (2006). "Health, Medicine, and the Media". Health and History. vol. 8, no. 2: 1–13 – via JSTOR.
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