For those of us living with ME/CFS, we know firsthand how truly life-altering it can be. While awareness is growing, many people are still unaware of the most terrifying realities surrounding this condition. Here are 10 facts about ME/CFS that I don’t think are talked about enough. Lately, I’ve been having conversations about these topics with friends who are unaware of the condition. Some of the numbers I reference below should make you shudder.

1. The Number of New Cases is Increasing

Since the COVID-19 pandemic, a significant number of people now meet the diagnostic criteria for ME/CFS. Before COVID-19, around 1.5 million Americans lived with the condition, incurring an annual economic impact of $36 to $51 billion. After COVID-19, experts like Lenny Jason from DePaul University estimate the prevalence could rise to between 5 to 9 million cases, pushing the economic cost to a staggering $149 to $362 billion in medical expenses and lost productivity.

Source: Updated ME/CFS prevalence estimates reflecting post-COVID increases and associated economic costs and funding implications (2022)

2. It Can Take 5 Years or Longer to Get Diagnosed

For many ME/CFS patients, getting a diagnosis is a long and frustrating journey. Data from multiple surveys show that most patients wait more than a year to receive a diagnosis, with some waiting up to five years or longer. Personally, it took me about three years to get an accurate diagnosis. How long did it take for you? This lengthy diagnostic process results in unnecessary medical expenses and emotional strain, compounded by the frequent dismissal from healthcare providers.

Source: National Academies Press Report on ME/CFS (2015)

3. Suicide is a Leading Cause of Death

Perhaps one of the most heartbreaking facts is that suicide is a leading cause of death among ME/CFS patients, particularly those with severe forms of the illness. In countries where euthanasia is legal, such as the Netherlands and Sweden, there have been reports of patients choosing assisted suicide. Additionally, those with severe ME/CFS are at a higher risk of death due to malnutrition and, potentially, cardiovascular disease and certain cancers.

Source: The ME Association's Mortality in ME/CFS Review (2023)

4. Quality of Life is Shockingly Low

ME/CFS patients often experience a lower quality of life than individuals suffering from chronic illnesses like cancer, MS, or congestive heart failure. The most severe cases involve patients being bedridden, unable to perform basic self-care, and reliant on others for daily activities such as feeding and hygiene. Even patients with less severe forms struggle with chronic pain, severe mobility issues, and post-exertional malaise (PEM), which can make simple tasks unbearable.

Source: Health-Related Quality of Life for ME/CFS Patients (2015)

5. Recovery is Extremely Rare

ME/CFS severely limits the ability to work, with around 75% of patients unable to maintain employment. About 25% are homebound or bedridden. Recovery rates are grim, with some research suggesting that the chance of full recovery is only 5%. This leaves most patients managing symptoms indefinitely, without any promise of a cure.

Source: Systematic Review of ME/CFS Prognosis (2005)

6. Research Funding Remains Abysmally Low

Despite the millions of people affected by ME/CFS, research funding for the condition is shockingly low. The NIH has an annual budget of $48 billion, yet only $5 to $17 million is allocated to ME/CFS research each year. ME/CFS is among the most poorly funded disorders, ranking in the bottom 5% in funding of the diseases and conditions the NIH funds. For perspective, diseases with a similar societal burden receive anywhere from $50 to $200 million annually. Experts have called for a 14-fold increase in funding to properly address this crisis.

Source: The Relation Between ME/CFS Disease Burden and Research Funding (2020)

7. There Are No Approved Drugs or Treatments

Currently, there are no FDA-approved drugs or treatments for ME/CFS. Rest and pacing are the only widely recommended management strategies, and while some medications are used off-label to manage symptoms, none have been proven in large-scale clinical trials. This lack of treatment is largely due to the low levels of funding, which limits the number of clinical trials conducted.

8. Specialists Are Few, and Many Are Retiring (or dying)

One of the most discouraging aspects of ME/CFS is the lack of medical specialists. In the U.S., there are roughly 15 ME/CFS specialists, and many are nearing retirement age. In the U.K., around 50 specialist centers exist, though some of them still promote controversial treatments like graded exercise therapy (GET). Where I am in Germany, there are even fewer specialists. I know of a single treatment facility in Munich that only offers in-patient care. The shortage of specialists means patients often face long waiting lists and struggle to find appropriate care.

Source: NHS Guidelines on ME/CFS Specialist Centers (2022)

9. ME/CFS in Children is Poorly Understood

Although ME/CFS primarily affects adults, children are not immune. I certainly wasn’t when I first became ill as a teen! Research shows two peak ages of onset: 11 to 19 years old and 30 to 39 years old. However, pediatric ME/CFS remains poorly understood, and most research focuses on adults. This lack of understanding leaves pediatricians ill-equipped to diagnose and manage the condition, even though the disease can severely impact a child’s education and social development. The prognosis is far better in children, but I unfortunately can’t count myself among the fully recovered.

Source: Population-Based Registry Study on ME/CFS in Children (2014)

10. ME/CFS is Poorly Understood in Minority Communities

The condition was initially dubbed the "Yuppie Flu," leading to the misconception that only affluent white people were affected. However, research suggests that ME/CFS may actually be more prevalent in communities of color. Unfortunately, minority communities face greater disparities in healthcare access, making it harder to diagnose and treat the condition. Given that communities of color were disproportionately affected by the COVID-19 pandemic, it’s crucial to conduct more research on the impacts of long COVID and ME/CFS in these populations.

Source: Diagnosis and Management of ME/CFS in Minority Communities (2014)

Conclusions

These are topics I think we need to talk more about in the community, as bleak as they may be. Thanks to the COVID-19 pandemic, awareness is growing, yet these 10 terrifying facts highlight just how much more needs to be done in terms of research, treatment, and understanding. The lack of funding, the increase in new cases, and the grim prognosis for recovery make it clear that the fight for better care and support is far from over.

Did any of these facts surprise you? Share your thoughts and experiences in the comments below.