Unveiling the Stigma, Delegitimizing Experiences, and Strained Relationships of those suffering with ME/CFS.

Summary

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic and disabling illness that affects millions of people worldwide, yet it remains poorly understood and stigmatized by society. This paper explores the stigma and delegitimization experiences of people with ME/CFS, and how they affect their social, psychological, and physical well-being. It also examines the factors that contribute to the stigma, such as the lack of awareness, the ambiguous diagnosis, and the dismissive attitudes of health care providers and others. Furthermore, it discusses the best practices to destigmatize ME/CFS and improve the quality of life and care for people with this condition, such as creating awareness, providing support, and advocating for research and funding. The paper concludes with some key takeaways and gaps in the current knowledge and practice regarding ME/CFS.

Key Terms

ME/CFS - Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex and debilitating chronic illness characterized by extreme fatigue that does not improve with rest and is often exacerbated by physical or mental exertion. Individuals with ME/CFS may experience a range of symptoms including widespread muscle and joint pain, cognitive difficulties, sleep disturbances, and post-exertional malaise. Its exact cause remains unknown, making diagnosis and effective treatment challenging.

Disease Burden - The impact of a health condition on individuals, communities, or populations, encompassing the physical, emotional, social, and economic toll it imposes. It includes factors such as morbidity, mortality, disability, decreased quality of life, financial costs, and the burden on healthcare systems and society. Understanding and quantifying disease burden is crucial for health planning, resource allocation, and implementing effective public health policies and interventions.

Stigma - A negative and often unfair belief or perception that people hold about a particular characteristic, trait, condition, or circumstance that sets individuals or groups apart from what is considered "normal" or socially acceptable within a given society. It involves labeling, stereotyping, and discriminating against individuals or groups based on these characteristics.

Etiology - The study of what causes diseases or health problems. It includes factors like infections, genetics, environment, and lifestyle. Understanding it helps in prevention, treatment, and management of conditions.

Pathophysiology - The study of how diseases change how our body works, helping healthcare professionals understand symptoms, biological changes, and disease progression for accurate diagnosis and treatment.?

Delegitimation Experience - An event or situation where someone or something is undermined, discredited, or devalued in terms of its legitimacy, credibility, or authority. It involves an act or series of acts that challenge the perceived or accepted status, position, or rights of a person, group, idea, institution, or concept.

Post-Exertional Malaise - Post-exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks. PEM can be mitigated by activity management (pacing).

Physiological ?- Physiology is a branch of biology that deals with the functions and activities of life or of living matter (such as organs, tissues, or cells) and of the physical and chemical phenomena involved. In this instance, when discussing ME/CFS and depression, Major Depressive Disorder is typically caused by a physiological imbalance of neurotransmitters in the brain; whereas, ME/CFS’ depressive tendencies are typically caused more by symptoms of fatigue, and a lack of understanding from those around them.

Major Depressive Disorder - Commonly referred to as depression, is a mental health condition characterized by persistent and intense feelings of sadness, hopelessness, and a lack of interest or pleasure in activities. It is a serious and debilitating condition that can affect a person's thoughts, emotions, and physical well-being.

Context

Q: What is ME/CFS and how does it affect people’s daily lives?

A: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. They may experience periods of intense fatigue followed by periods of well-being. Most people with ME/CFS experience symptoms that worsen after strenuous physical or mental activity.

Q: Who is most affected by ME/CFS?

A: ME/CFS is known as a predominantly female disease. However, there are still many men that receive a diagnosis. Approximately sixty-five percent of those diagnosed are women, and thirty-five percent are men.

Q: Where are most people afflicted with this disease and how prevalent is it?

A: There is no official database tracking every case of ME/CFS, and it is incredibly difficult to do so because many patients struggle to get a diagnosis. However, research done by using machine learning to analyze hospital records suggest there are between 1.7 million and 3.38 million people in the US suffering from the disease. Many of whom are yet to be diagnosed and are living unaware that there is a medical condition contributing to their feelings of fatigue. Research is typically conducted in the US and UK, so global estimates are not available. This also makes it difficult to identify societal or cultural factors that can contribute to prevalence.?

Q: When are people most likely to develop ME/CFS?

A: ME/CFS can develop at any age, but it often begins in early to mid-adulthood. It is most commonly diagnosed in people in their 40s and 50s. However, it's important to note that ME/CFS can affect individuals of all ages, including children and adolescents.

Q: What makes this disease different from others?

A: Even though the burden of disease, and other added costs, are around 50% higher than that of multiple sclerosis (MS) and lupus, the existence of ME/CFS is largely unknown. Most people who are aware of ME/CFS have a relative or friend who has been diagnosed with it. In addition to that, there are no biological tests that can show a clear diagnosis, which means physicians need to be educated about the symptoms and burdens posed in order to effectively diagnose.

Contributing Factors

#1 - Lack of Awareness

While there is a substantial amount of research conducted and available on ME/CFS,? and estimates suggest there are between 836,000 and 2.5 million people diagnosed with the disease, the vast majority of people, including many physicians, remain largely unfamiliar with the disease. In fact, a study conducted showed that of 50 people interviewed with ME/CFS, 45 had experienced delegitimization of the disease by their healthcare provider. This study was replicated multiple times with similar findings in each case. This is due to challenges in diagnosis. Given the absence of visible symptoms, skepticism from physicians regarding the disease's severity, and physicians questioning patient’s honesty in explaining symptoms. In fact, due to this lack of knowledge, many physicians believe the disease is psychosomatic and prescribe a treatment that does not affect the underlying issue.?

Furthermore, after the COVID19 pandemic, some individuals have been diagnosed with what is now commonly called “Long Covid.” Many symptoms of long covid are incredibly similar to those of ME/CFS. Even with the more general awareness of long covid, research shows that physicians are still unaware or undereducated about the existence and reality of ME/CFS.

#2 - Dismissed as a symptom of modern living or associated with other common mental illnesses.

Another factor contributing to the stigma surrounding ME/CFS, is that many of its symptoms are similar to the reality of living in this modern world. Fatigue is a normal and natural part of life on this planet, and many assume that people suffering from symptoms of ME/CFS are exaggerating the severity of their fatigue, or its length. People suffering from ME/CFS frequently have family members or peers assume that their disease isn’t real, they have? depression, or that they’re just being lazy. Other symptoms of ME/CFS closely resemble those of a typical cold, such as a sore throat, muscle pain, and headaches. This resemblance may lead observers to underestimate the severity of the illness, or believe that people are not ill at all.?

On top of that, a study published in the Journal of Health Psychology found that people were more likely to legitimize people who said they were diagnosed with the “ME” part of ME/CFS, or “myalgic encephalopathy” than people who used the term “Chronic Fatigue Syndrome.” This has caused some debate on whether or not to give ME/CFS a new name as the term “Chronic Fatigue Syndrome” has caused many complications, and the term “myalgic encephalomyelitis” does not describe the nature of the disease or its symptoms.

?#3 - Unpleasant and damaging experiences with general practitioners while seeking help.

Another factor contributing to this stigma is the fact that it is difficult to receive a diagnosis from physicians. In fact, around 84 to 91 percent of people suffering from ME/CFS remain undiagnosed, and many patients aren’t diagnosed until after one to five years from the time they originally got sick. This is mostly due to the fact that, as of now, the etiology and pathophysiology are still unknown. In addition, there is no universal diagnostic process or test that can be conducted to verify diagnosis. Due to the absence of such tests, physicians frequently “psychologize” their patients' symptoms.?

Regrettably, within the broader medical landscape, ME/CFS frequently contends with a perception that it is less relevant or serious when compared to widely recognized and extensively studied illnesses such as cancer. This disparity in perceived gravity has profound implications, impacting not only public awareness but also healthcare prioritization and research funding allocation. The prevailing societal narrative often sidelines ME/CFS, pushing it to the sidelines of medical discourse and undermining the urgency of finding effective treatments.

The comparison to more well-known and extensively researched conditions further compounds the challenges faced by individuals with ME/CFS. This lack of recognition can lead to decreased empathy and understanding, hindering the development of a robust support system for those grappling with the daily hardships of ME/CFS. Consequently, the perceived inferiority of ME/CFS in relation to more widely acknowledged diseases perpetuates a cycle of neglect, impeding progress in research, diagnosis, and ultimately the provision of adequate care for those affected by this debilitating condition.

Negative Consequences

#1 - Social Isolation.

Social isolation is a common consequence of having ME/CFS, not only from suffering from the symptoms, but also facing the stigma associated with the illness. The most common symptoms are: fatigue, pain, cognitive dysfunction (also known as "brain fog"), trouble falling or remaining asleep, post-exertional malaise, and secondary depression and anxiety. These symptoms can severely impair the quality of life and functioning of people with ME/CFS, making it difficult or impossible for them to engage in work, education, social activities, and hobbies.

Many people with ME/CFS experience a loss of social support and connection. They may withdraw from their friends, family, and community due to the physical and emotional challenges of living with ME/CFS. Some people with ME/CFS report feeling isolated, lonely, misunderstood, and abandoned by the society that they once belonged to. A study from the University of East London was conducted to explore the relationship between ME/CFS and depression. The researchers found that a majority of participants were unable to work, or had to leave their employment due to the burden of the disease. This heightens social isolation because many people form social connections and circles of trust around their peers at work. Not only are people unable to work which contributes to feelings of isolation and loneliness, but many report feelings of delegitimization from former colleagues, thus causing them to withdraw further from their previous peer groups. The difficulty of maintaining employment is also heightened by a general lack of awareness or belief in the disease. While ME/CFS is covered under the Americans with Disabilities Act, employers and universities are hesitant to grant reasonable accommodations.

#2 - Strained Relationships.

Another issue that stems from a lack of awareness and stigmatization of ME/CFS that is connected to social isolation, is the straining of existing relationships when one is seeking, or has received, a diagnosis. In a qualitative study published in the National Library of Medicine, researchers reported that many women avoided people who had reacted negatively when communicating their illness. This includes withdrawing from physicians with whom these women had previously met with to understand their symptoms. This is especially common with women who reported delegitimizing experiences with said physicians. Many women reported that, to avoid stigmatization from their loved ones, they refrained from telling others about their illness entirely. However when suffering from symptoms of ME/CFS, people can find themselves unable to attend social gatherings or fulfill responsibilities. Therefore, these women reported to alienate themselves from people and were unable to have open conversations with their peers, family, and friends.

In addition, many sufferers of ME/CFS report that they need to divide their social lives into a larger group, who are unaware of their struggles, and a select few individuals whom they feel they can share information about their illness with. Even still, a portion of the women studied reported that the legitimacy of their struggles were questioned by those closest to them. This made them lose trust in some of the people whom they believed could be relied on through anything.?

#3 - Decline in Mental Health and Happiness; potential increased risk of suicide.

One of the most common and debilitating psychological effects of ME/CFS is depression. Studies have shown that people with ME/CFS have higher levels of depression measured against those with different illnesses, as well as healthy individuals studied as a control group. However, the depression experienced by people with ME/CFS is not the same as the depression experienced by people who have major depressive disorder (MDD). According to the researchers at the University of East, 50-80% of people with ME/CFS suffer from depression as well, but their depression is more reactive and situational than physiological. In other words, their depression is largely caused by the stress and frustration of living with a chronic and disabling illness, rather than by a chemical imbalance or a genetic predisposition.Moreover, the intensity of their depression tends to move in relation with the severity of their physical symptoms, whereas people with MDD have more consistent feelings of depression. This study also showed that people with a chronic illness where the cause was not entirely known had higher anxiety and depression than those where the cause was more certain.

A primary factor that contributes to the depression and anxiety of those with ME/CFS is the perception that others are not taking their illness seriously. This can include family members, friends, employers, and especially health care providers. Deligitimizing experiences from family, friends, and physicians can lead to feelings of hopelessness, helplessness, and worthlessness. In fact, those who had a perceived delegitimizing experience with a physician reported higher depression and anxiety than those who did not.

A tragic consequence of the psychological distress of people with ME/CFS is the increased risk of suicide. A recent study found that the mortality rate due to suicide was potentially higher among those with symptoms of ME/CFS than the general population. However, due to the absence of longitudinal studies conducted surrounding this topic, it is difficult to find evidence that ME/CFS and the depression that coincides with it was the cause of these instances of suicide. Regardless, an understanding of ME/CFS and the stigmatization thereof is crucial in efforts to reduce rates of suicide in the US and around the globe.

Best Practices?

Practice - Raising Awareness

In recent years, there has been a growing recognition of the biological basis and the severity of ME/CFS, as well as a parallel effort to destigmatize mental health concerns in general. Just as people with depression, anxiety, or other mental health issues deserve respect and support, so do people with ME/CFS. The COVID-19 pandemic has shed light on the plight of ME/CFS patients, as many people who contracted the virus developed long-term symptoms that resemble those of ME/CFS. The phenomenon of Long COVID has raised awareness and empathy for the millions of people who have been living with similar symptoms for years or decades due to ME/CFS. It has also highlighted the need for more research and funding to understand the causes and treatments of these chronic conditions.

Efforts have increased to spread awareness because now May 12 is recognized as ME/CFS Awareness Day. Which is a global event that aims to increase public knowledge and support for people with ME/CFS and related illnesses. The CDC highlights this day on their webpage, as well as in their offices. On this day, people can all join the efforts to destigmatize ME/CFS and advocate for better care and recognition for those who suffer from it. Sharing stories, facts, and resources, can help break the silence and isolation that many people with ME/CFS experience, and show them that they are not alone.

Impact

Destigmatizing any disease profoundly enhances the well-being of individuals facing that condition. By dismantling societal stigma, individuals experience improved mental health, including reduced feelings of shame and isolation, leading to enhanced self-esteem. The ensuing supportive environment promotes increased social support, facilitates access to information and treatments when available. Destigmatization also reduces discrimination, fostering better employment opportunities and social inclusion. Empowered by a destigmatized environment, individuals often engage in advocacy, challenging stereotypes and contributing to broader societal understanding.

Gaps

Destigmatizing conditions like ME/CFS is a gradual and intricate process, primarily reliant on cultivating awareness. The most impactful solutions involve instigating countless individual-level changes that collectively shape the culture and attitudes of society. This transformation requires patience and persistence, acknowledging that it takes time for a broad understanding and acceptance of the disease to permeate through conversations and societal perspectives.

Even as discussions around ME/CFS evolve, and more people become empathetic and supportive, there will inevitably be individuals resistant to the broader acceptance of the condition. Achieving perfection in dispelling stigma may remain elusive, highlighting the ongoing need for continued education and advocacy efforts. Additionally, the persistent lack of understanding regarding the causes and potential treatments for ME/CFS contributes to its enigmatic nature. Until researchers pinpoint the specific cause of the illness, a degree of mystery will persist, and societal acceptance will rely on an acknowledgment of this uncertainty while awaiting further insights into the condition.

Key Takeaways

• ME/CFS is a chronic illness with a heavy disease-burden affecting estimated millions of people worldwide.
• There is no clear test or diagnostic process for physicians to use to diagnose ME/CFS.
• This ambiguity and mystery around the cause of the disease has created a debilitating stigma that negatively impacts those who suffer from ME/CFS far beyond the symptoms themselves.
• Creating awareness of the disease, and destigmatizing the illness, can increase the overall well being of patients of ME/CFS and allow them increased feelings of support which in turn will boost mental, and potentially physical, health.