What happens when you have a disease doctors can't diagnose | Jennifer Brea

Introduction

Jennifer Brea introduces herself and shares her experience of being a healthy PhD student at Harvard before suddenly falling ill.

Jennifer's life before falling ill

• Jennifer was a PhD student at Harvard.

• She loved to travel and had just gotten engaged.

• At 28 years old, she felt invincible.

Onset of Illness

Jennifer describes the onset of her illness and the initial symptoms she experienced.

Initial symptoms

• Jennifer had a high fever of 104.7 degrees.

• She was extremely dizzy and couldn't leave her house.

• She experienced frequent infections but doctors found nothing wrong.

Seeking Answers

Jennifer discusses her frustration with doctors not finding any biological cause for her symptoms and how she tried to explain it to herself.

Frustration with doctors

• Doctors couldn't find anything wrong through laboratory tests.

• Jennifer's symptoms were dismissed as aging or psychological in nature.

Misdiagnosis

Jennifer talks about seeing various specialists and eventually being diagnosed with conversion disorder, which she didn't believe was accurate.

Seeing specialists

• Jennifer saw infectious disease doctors, dermatologists, endocrinologists, cardiologists, and even a psychiatrist.

• Her neurologist diagnosed her with conversion disorder, attributing all her symptoms to emotional trauma without any biological cause.

Doubts and Experimentation

Despite doubting the diagnosis of conversion disorder, Jennifer decides to consider the possibility that her neurologist might be right. She conducts an experiment to explore the connection between her mind and physical symptoms.

Doubts and experimentation

• Jennifer, being a social scientist, understands that the truth can be counterintuitive.

• She walks back home from her neurologist's office, meditating on the pain she experiences.

• Upon reaching home, she collapses with intense burning sensations in her brain and spinal cord.

Living with Chronic Illness

Jennifer describes the debilitating symptoms of her illness and discovers a community of people worldwide who share similar experiences.

Debilitating symptoms

• Jennifer experiences extreme stiffness in her neck, sensitivity to sound, and excruciating pain triggered by even slight movements or sounds.

• She spends most of the next two years bedridden.

Discovering a community

• Jennifer finds thousands of people online living with similar symptoms.

• Some are able to work but spend their evenings and weekends in bed just to recover for the next day.

• Others are so severely affected that they live in complete darkness and cannot tolerate human touch or voices.

Myalgic Encephalomyelitis (Chronic Fatigue Syndrome)

Jennifer explains that her diagnosis is myalgic encephalomyelitis (ME), commonly known as chronic fatigue syndrome (CFS). She highlights the severity of the disease and its impact on daily life.

Myalgic encephalomyelitis (ME)

• ME is often referred to as chronic fatigue syndrome.

• Exertion leads to severe consequences for patients, both physically and mentally.

• Patients experience limitations in their abilities to perform tasks they once could do effortlessly.

Impact of ME/CFS

• Approximately 15 to 30 million people worldwide have ME/CFS.

• In the US alone, there are around one million individuals affected by this condition.

• The disease can be as serious as multiple sclerosis, with patients experiencing physical function comparable to those with congestive heart failure.

• A significant percentage of patients are homebound or bedridden, and the majority cannot work even part-time.

Historical Context and Stigma

Jennifer explores the historical context of ME/CFS and how it has been stigmatized throughout history.

Historical context

• Ancient beliefs attributed hysteria to sexual deprivation in passionate women or the wandering uterus.

• In the 1880s, neurologists attempted to modernize the theory of hysteria by linking it to unconscious emotions manifesting as physical symptoms.

• These ideas persisted for centuries, reinforcing gender biases and blaming women's bodies for unexplained illnesses.

Stigma and neglect

• Jennifer discovers that her illness is not a new phenomenon. Outbreaks similar to her symptoms have been documented since 1934.

• Despite its prevalence and impact on millions of lives, ME/CFS has been largely neglected by medical professionals and scientific research.

# The Staying Power of the Idea of Mass Hysteria

This section explores why the idea of mass hysteria has persisted over time, particularly in relation to outbreaks that disproportionately affect women.

Sexism and the Desire to Help

• Doctors want to find answers and help patients, and the concept of mass hysteria allows them to treat unexplained illnesses.

• However, this can lead to harm as it may delay proper diagnosis and treatment for underlying conditions.

Historical Perspective on Hysteria

• In the 1950s, a psychiatrist named Eliot Slater studied a group of patients diagnosed with hysteria. Many later turned out to have undiagnosed conditions such as multiple sclerosis, epilepsy, and brain tumors.

• Hysteria was officially renamed "conversion disorder" in 1980, but women are still more likely than men to receive this diagnosis.

# The Problem with Psychogenic Illnesses

This section highlights the limitations of psychogenic illness theories like hysteria in terms of proof and their impact on biological research for diseases like ME (Myalgic Encephalomyelitis).

Lack of Evidence for Psychogenic Illnesses

• Psychogenic illnesses cannot be proven as they are defined by the absence of evidence.

• Psychological explanations for ME have hindered biological research into the disease.

Funding Disparity for ME Research

• ME is one of the least funded diseases globally compared to other conditions like AIDS or multiple sclerosis.

• In the US, significantly less funding is allocated per ME patient compared to other diseases.

# Gender Bias in Autoimmune Disease Diagnosis

This section discusses gender bias in autoimmune disease diagnosis and how it affects women's experiences with healthcare.

Gender Disparities in Autoimmune Diseases

• Rates of autoimmune diseases have increased, with 75% of patients being women.

• Women are often initially dismissed as hypochondriacs before receiving a proper diagnosis.

Challenges Faced by Women

• Women may struggle to be taken seriously when reporting symptoms, leading to delayed or misdiagnosed conditions.

• Men may also face difficulties in getting diagnosed due to gender stereotypes.

# Progress and Hope for ME Research

This section highlights the progress and hope in ME research, as well as the resilience of patients.

Advancements in ME Research

• Scientists in Germany, Japan, and the US are making discoveries related to autoimmunity, brain inflammation, and energy metabolism abnormalities in ME.

• Clinical trials on cancer drugs show potential for complete remission in some ME patients.

Patient Resilience and Advocacy

• Patients have come together online to share stories, research, and self-experimentation.

• Despite challenges, there is hope for better treatment options and understanding of ME.

# The Importance of Changing Institutions and Culture

This section emphasizes the need for systemic changes in institutions and culture to prevent repeating the same mistakes with future diseases.

Learning from Past Mistakes

• Historical examples show how diseases were once considered psychological until scientific advancements revealed their biological mechanisms.

• Without changing institutions and cultural biases, similar patterns can occur with other diseases.

Personal Journey and Gratitude

• The speaker shares her personal journey of illness but expresses gratitude for how far she has come.

• She acknowledges the role of community support through online connections.

# Call for Action to Save Lives

This section calls for action to save lives by asking the right questions, making real changes, and supporting research efforts.

Preventing Future Tragedies

• By asking the right questions and prioritizing research, lives could have been saved in the past.

• Taking action now can prevent similar tragedies in the future.

Living with Illness and the Importance of Nuanced Thinking

In this section, the speaker reflects on their experience living with illness and emphasizes the importance of nuanced thinking in the fields of science, medicine, and women's health.

Living with Illness as a Lesson in Human Endeavors

• Living with illness has taught the speaker that science and medicine are profoundly human endeavors.

The Battle for Equality within Our Immune Systems

• The speaker highlights that our immune systems are just as much a battleground for equality as the rest of our bodies.

Listening to Patients' Stories and Embracing Uncertainty

• It is crucial to listen to patients' stories in order to gain a deeper understanding of their experiences.