ME/CFS affects millions of people around the world with devastating impacts. The disease is not well understood, leaving sufferers ‘missing from their own lives’. As patient and advocate, Jen Brae, notes in her popular Ted Talk, because of ME/CFS there are “ballet dancers who can’t dance, accountants who can’t add, medical students who never became doctors”. For this reason advocacy events are connected with the hashtag #MillionsMissing.
People with ME/CFS have the lowest quality of life compared with those suffering from more than 20 other diseases
ME/CFS is a complex neurological disease that affects all the major systems in the body including the endocrine, cardiac, gastrointestinal, and endocrine systems. While it is not rare – in Australia it is estimated up to 250,000 people suffer from the disease – there are no known causes, effective treatments or cure. People with ME/CFS have the lowest quality of life compared with those suffering from more than 20 other diseases including multiple sclerosis, cancer, diabetes, stroke, kidney failure and schizophrenia. Twenty five percent of those affected are either bedbound or housebound. More than 75% of those with ME/CFS are women.
It is common for ME/CFS patients to be misdiagnosed with psychiatric conditions. A brand new study found that 42% of those who went to an emergency department were dismissed as having psychosomatic complaints. One of the most common of these misdiagnoses is conversion disorder. Once known as hysteria, it was a common label doctors placed on women in the Victorian era who were considered overly emotional. However, the current diagnostic criteria for conversion disorder requires that no other condition (including ME/CFS) would explain the neurological symptoms.
In ’Doing Harm,’ Maya Dusenbury shows how people with ME/CFS suffer from a paradoxical gender bias in healthcare. Women’s symptoms aren’t taken seriously because medicine doesn’t know as much about their bodies and the diseases that affect them; and medicine doesn’t know as much about women’s bodies and the diseases that affect them because it doesn’t take their symptoms seriously.
The gender bias in medicine affects women in a range of situations. Heart attacks are the biggest killer of women in Australia but are half as likely to receive appropriate testing and treatment upon presentation to a hospital. Women are also likely to be referred for cardiac rehabilitation and prescribed preventive medications upon discharge. Women are less likely than men to get CPR from a bystander if they collapse on the street and are more likely to die. Although women make up two thirds of Alzheimer’s patients, researchers have found that in the UK, women with dementia receive worse medical treatment than men with the condition.
Women’s pain is taken less seriously than men’s, and they experience longer diagnostic delays for everything from brain tumours to rare genetic disorders. Before the invention of ibuprofen, doctors used to regularly tell patients that period pain was in their heads. One in ten Australian women suffer from endometriosis at some point in their life, but it can take from 7-12 years to get a diagnosis.
Systematic bias has significant flow on effects for patients, their families and the community at large. Current figures show a record number of sick and disabled people are on Newstart, having been denied access to the Disability Support Pension. Not only does this reduce the income patients have to cover the basics like housing, but it also means they are unlikely to have the budget to cover medical expenses such as visits to doctors or specialists, prescriptions or supplementary medication that may help manage their symptoms.
Government programs like the National Disability Insurance Scheme (NDIS) have policies based on outdated research claiming that people with ME/CFS get better with the Cognitive Behaviour Therapy and Graduated Exercise Therapy. The research for these treatments has been thoroughly disproved and it has been shown how Graded Exercise Therapy in fact makes patients worse. Yet, patients are still being rejected from the NDIS either because they haven’t ‘exhausted all known treatment options’ or because their condition is not considered ‘permanent’, two criteria used for determining eligibility.
After being rejected for the NDIS, an appeal can be lodged with the Administrative Appeals Tribunal. The bureaucratic burden of applications and appeals is extreme, especially for people who are already restricted by disease and disability. While the government and medical systems in Australia remain unchanged, patients who suffer from this disease remain the #MillionsMissing from their everyday lives.
Susan Hutchinson is the Executive Director of Azadi-e Zan, a new NGO helping Afghan women’s rights defenders since the fall of Kabul. She lives with a chronic disabling illness. Before becoming ill she was the Civil-Military Advisor for the Australian Council for International Development. Susan continues to focus her energy on women’s experiences of conflict and is currently undertaking a PhD on women, peace and security at the Australian National University’s Coral Bell School.