Chronic Fatigue Syndrome is more real than you think!

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and debilitating disease that affects millions of people worldwide. However, the exact prevalence and characteristics of ME/CFS in the US population are not well known, partly due to the challenges of diagnosing and studying this condition.

To address this gap, the National Center for Health Statistics (NCHS) released a new data brief in December 2023, based on the 2022 National Health Interview Survey (NHIS). The data brief provides estimates of the prevalence and sociodemographic characteristics of adults aged 18 and over who reported having been diagnosed with ME/CFS by a doctor or other health professional. The data brief also compares the health status, health care access and utilization, and disability status of adults with ME/CFS to those without ME/CFS, using data from the 2022 NHIS and the 2022 American Community Survey (ACS).

Before we dive into the recent findings of CDC, here is a brief overview of Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

What exactly is Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex and debilitating medical condition that affects millions worldwide. The term ME reflects the inflammation of the brain and spinal cord, while CFS underscores the pervasive and profound fatigue experienced by individuals. The pathophysiology of ME/CFS remains enigmatic, with no single identifiable cause, but a combination of factors is believed to contribute, including viral infections, immune system dysfunction, and genetic predisposition.

The hallmark of ME/CFS is persistent and unexplained fatigue, often exacerbated by physical or mental exertion, referred to as post-exertional malaise. Other prevalent symptoms encompass cognitive difficulties (often referred to as “brain fog”), sleep disturbances, muscle pain, and joint pain.

The ambiguity in symptoms has led to a myriad of misconceptions and misdiagnoses, making it crucial for healthcare professionals to employ a comprehensive approach to diagnosis. The colloquial interchangeable use of CFS and ME has historical roots, but recognizing both terms highlights the diverse array of symptoms that characterize this syndrome.

The journey from symptom onset to diagnosis can be protracted, as patients often face skepticism due to the lack of overt physical signs. Raising awareness and understanding within the medical community is imperative to ensure timely diagnosis and appropriate management of this debilitating condition.

What are the implications of Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to a person’s life and future?

ME/CFS profoundly impacts various facets of an individual’s life, extending beyond the realms of physical health. The pervasive fatigue and unpredictable symptomatology can disrupt personal relationships, career aspirations, and daily activities. Many individuals find themselves grappling with a sense of loss – of their former abilities, social connections, and the envisioned trajectory of their lives.

Career trajectories may be altered, as the unpredictable nature of ME/CFS can make sustaining regular employment challenging. Individuals often face societal skepticism, with the invisible nature of their condition leading to misunderstandings and misconceptions.

The emotional toll is significant, and mental health considerations become paramount. Anxiety and depression may accompany the chronic nature of the illness, necessitating a comprehensive approach that addresses both physical and psychological well-being.

Planning for the future with ME/CFS requires a recalibration of expectations and a focus on adaptive strategies. Establishing a support network, both within the medical realm and personal life, is crucial. Additionally, cultivating resilience and adapting to the ebb and flow of symptoms becomes a cornerstone in crafting a meaningful and fulfilling life despite the challenges posed by ME/CFS. While the road may be challenging, advancements in research and increased awareness offer hope for improved management strategies and a better quality of life for those affected by this complex syndrome.

How can chronic fatigue syndrome be managed?

Management of ME/CFS is multifaceted and primarily focused on relieving symptoms and improving overall quality of life. Due to the absence of a specific cure, a personalized and holistic approach is essential. Patients are encouraged to actively participate in their care, adopting a balance between activity and rest, known as pacing. This involves carefully managing daily activities to prevent overexertion, which can exacerbate symptoms.

Cognitive-behavioral therapy (CBT) and graded exercise therapy (GET) are commonly utilized components of the treatment plan. CBT helps patients address the psychological impact of chronic illness and develop coping strategies, while GET involves gradually increasing physical activity levels under professional guidance. However, it is crucial to tailor these interventions to each individual, as pushing too hard can have adverse effects.

Symptomatic relief is achieved through medications targeting specific symptoms, such as pain relievers for muscle and joint pain, sleep aids for insomnia, and medications to address cognitive dysfunction. Support from healthcare professionals, family, and the community is integral to effective management, fostering an environment that acknowledges the challenges of ME/CFS and supports patients on their journey toward improved well-being.

Key Findings in the latest data brief from CDC

Now that we have a basic understanding of chronic fatigue syndrome, here are the key findings from the data brief from CDC.

An estimated **1.8 million** adults in the US (0.8% of the population) reported having been diagnosed with ME/CFS in 2022. This is a significant increase from the previous estimate of 0.4% in 2015, based on a different survey methodology.

The prevalence of ME/CFS was higher among women (1.1%) than men (0.5%), and among non-Hispanic white (1.0%) and non-Hispanic black (0.9%) adults than Hispanic (0.4%) and non-Hispanic Asian (0.3%) adults.

Graph from data brief showing distribution of CFS among males and females.

The prevalence of ME/CFS also varied by age group, education level, income level, and marital status. Adults aged 45-64 years had the highest prevalence of ME/CFS (1.2%), followed by those aged 18-44 years (0.9%) and those aged 65 years and over (0.5%). Adults with less than a high school diploma had a higher prevalence of ME/CFS (1.4%) than those with higher levels of education (0.6%-0.8%).

A graph from data brief showing distribution of CFS among different age groups.

Adults with family income below the poverty level had a higher prevalence of ME/CFS (1.6%) than those with higher income levels (0.6%-0.9%). Adults who were divorced, separated, or widowed had a higher prevalence of ME/CFS (1.4%) than those who were married or living with a partner (0.7%) or never married (0.6%).

Adults with ME/CFS had worse health status, health care access and utilization, and disability status than those without ME/CFS. Adults with ME/CFS were more likely to report fair or poor health (66.5%) than those without ME/CFS (18.4%), and to have multiple chronic conditions (75.8% vs 38.7%).

A graph from data brief showing distribution of CFS among different races.

Adults with ME/CFS were also more likely to be uninsured (15.3% vs 10.7%), to have delayed or forgone medical care due to cost (28.9% vs 15.5%), and to have visited an emergency department in the past year (32.4% vs 19.9%). Adults with ME/CFS were more likely to have a disability that limits their ability to work (62.7% vs 10.9%), or to perform basic activities such as walking, dressing, or bathing (40.2% vs 8.6%).

The data brief provides valuable information on the burden of ME/CFS in the US population, and highlights the need for more research, awareness, and support for this underserved group of patients.

You can read the full data brief here:
[NCHS Data Brief No. 488, December 2023](https://www.cdc.gov/nchs/data/databriefs/db488.pdf)

Dr. Muhammad Hussain
Dr. Muhammad Hussain

MD, Entrepeneur & Administrator. Six years of experience, working in the field of clinical care, medical administration, and healthcare business.

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