Why ME/CFS and Long Covid Affects Way More Women than Men

Quick Summary: We're exploring why women are more affected by ME/CFS and Long Covid, focusing on hormonal differences and societal biases.

Disclaimer: This blog focuses on hormones mainly affecting cisgender women with ME/CFS and Long Covid. We aim to be inclusive and acknowledge that individuals of all gender identities may also experience hormonal variations affecting these conditions.


Introduction

Today we're diving into a pressing question: Why are women more affected by ME/CFS and Long Covid and how hormonal differences could be a key factor. Let's get started.

The Immune System: A Complex Guardian

Think of the immune system as a home security system. It's designed to keep out intruders (viruses and bacteria), but sometimes it can be a little too enthusiastic, causing more harm than good. According to a study conducted by the Johnson & Johnson, women mount more rapid and robust immune responses. This heightened alertness can protect them from initial infections but may also contribute to the persistence of conditions like ME/CFS, Long Covid and autoimmune diseases.

The Pregnancy Compensation Hypothesis

The Evolutionary Angle

The hypothesis starts with the idea that women's immune systems have evolved to be more reactive than men's. Why? Because during pregnancy, a woman's body has to protect not just itself but also the developing fetus. This heightened state of immune alertness is an evolutionary adaptation to ensure the survival of both mother and child.

While this robust immune response is beneficial during pregnancy and even in fighting off acute infections, it comes with a downside. The same mechanisms that make the immune system more reactive also make it more prone to "overreacting" when faced with pathogens or even the body's own cells.

The Estrogen Enigma: A Double-Edged Sword

Estrogen is more than just a female sex hormone; it's a complex molecule that interacts with various systems in the body, including the immune system. A study from ScienceDirect suggests that estrogen's influence on the immune system could be a key factor in why women are more likely to develope ME/CFS or Long Covid. Estrogen can modulate immune responses, making them either more or less aggressive.

This heightened reactivity is primarily due to hormonal changes, particularly the increase in estrogen levels, which act like the "settings" of the immune system. Estrogen influences the production of cytokines, signaling molecules that alert immune cells to rush to the site of infection or injury.

This modulation can lead to an imbalance in the immune system, which may contribute to the chronic symptoms seen in ME/CFS and Long Covid.


The immune system, when heightened by estrogen becomes like an overly sensitive security system.
It's so eager to protect that it sometimes misidentifies friend as foe, causing collateral damage in the process.

Autoimmune Tendencies: The Hidden Culprit

Women are more prone to autoimmune problems due to higher levels of estrogen, which can increase inflammation. Men are more protected from their bodies attacking itself due to higher levels of testosterone, which suppresses the number of autoantibody-producing cells.

This hormonal interplay may explain why conditions like autoimmune diseases, ME/CFS and Long Covid are more prevalent in women. A study from ScienceDirect delves into this further.

Women, Estrogen, and the Inflammation Dilemma

Inflammation is like the body's natural alarm system, alerting immune cells to potential threats like infections or injuries. However, when this alarm system is constantly ringing—thanks to elevated estrogen levels—it can lead to chronic inflammation.

Chronic inflammation is a prolonged and persistent activation of the immune system. While acute inflammation is beneficial for healing wounds and fighting off infections, chronic inflammation can have detrimental effects on the body.

Elevated levels of pro-inflammatory cytokines, such as interleukin-6 (IL-6) and tumor necrosis factor-alpha (TNF-alpha), act like sirens that go off when an intruder is detected. However, when these 'sirens' are constantly blaring, they can disrupt normal cellular function and even contribute to tissue damage.

Over time, this can lead to a variety of health issues, including exacerbation of fatigue and joint pain, which are common symptoms in ME/CFS and Long Covid.

Also when the body is in a state of chronic inflammation, metabolic processes can go awry, leading to weight gain or difficulty shedding pounds. For women, especially those navigating the maze of ME/CFS and Long Covid, this adds another layer of complexity to their health journey, making it even more challenging to find the way out.

The DecodeME Study: A New Perspective

The DecodeME study, a large-scale research project, found that a staggering 83.5% of ME/CFS participants were female. This isn't just a slight tilt on the gender scale; it's a full-on imbalance. Not only that, but females also tend to have more comorbidities and greater severity, especially if they are older and have been dealing with ME/CFS for over 10 years. This adds another layer of complexity to the issue, suggesting that hormonal differences are just one part of the puzzle. The study concludes that while hormonal differences are significant, they are not the sole reason for the gender disparity in ME/CFS. It's a complex interplay of biological, hormonal, and possibly even societal factors.

Societal Biases: The Invisible Barrier

Conditions that predominantly affect women have often been dismissed as psychological, leading to less research and understanding of these conditions. This societal bias has hindered progress in understanding why women are more affected by conditions like ME/CFS and Long Covid. The lack of research and understanding can lead to misdiagnoses and ineffective treatments, further complicating the recovery process for women.

Historically, women's health issues have been marginalized and often dismissed as "all in the head." For example, a study published in the Journal of Law, Medicine & Ethics found that women are 50% more likely to have their symptoms dismissed by healthcare providers than men. This dismissive attitude can lead to delayed diagnoses and inadequate treatment plans.

The gender bias extends to medical research as well. According to a report by the Society for Women's Health Research, only about 35% of clinical trial participants for autoimmune diseases are women, despite the fact that they make up the majority of patients. This underrepresentation skews research findings and can result in treatments that are less effective for women.

The societal biases also have economic implications. According to a study by the American Journal of Managed Care, women with ME/CFS have higher medical costs and are more likely to lose their jobs compared to men, exacerbating the financial strain on top of the physical and emotional toll.

By shedding light on these biases and advocating for more inclusive research and treatment approaches, we can start to chip away at the systemic issues that disproportionately affect women. It's not just a medical issue; it's a societal one that requires a multi-faceted approach to resolve.

The Complexity of Symptoms

A study published in the journal "Current Medical Research and Opinion" paints a vivid picture of the myriad symptoms that women with Long Covid experience. From respiratory issues that make breathing a laborious task to mood and neurological disorders that cloud the mind, the range is extensive. Moreover, musculoskeletal pain can make even simple movements a challenge. This complexity calls for a complex multi-disciplinary approach to treatment.

On the flip side, men with Long Covid are more likely to experience endocrine disorders like diabetes and kidney problems. While these are serious issues, they are often more straightforward to diagnose and manage compared to the nebulous symptoms that women experience. This difference underscores the need for gender-specific treatment protocols that take into account these unique symptom profiles.

Navigating the Complex Terrain: Final Thoughts

So, as we pull back the curtain on the science, it becomes glaringly obvious that women face a unique set of challenges when it comes to conditions like ME/CFS and Long Covid. The hormonal interplay, the robust immune responses, and even societal biases all conspire to make recovery a more complex puzzle for women.

Now, let's address the elephant in the room: Most of the popular recovery plans are made by men who got better themselves. They mean well, but their advice doesn't always work for women. It's like trying to fit a square peg into a round hole; it just doesn't work. Women's bodies are not just smaller versions of men's, and the hormonal and immunological differences we've discussed today make that abundantly clear.

So, the next time you come across a "miracle cure" for ME/CFS or Long Covid, especially one that doesn't take into account the complexities we've discussed, be skeptical. The path to recovery is not a straight line; it's a winding road that requires a map tailored to each individual's needs. And for women, that map should be based on a deep understanding of their unique biological and hormonal landscape.

If you're looking for a more personalized, nuanced approach to your recovery, consider joining our Small Group Coaching. It's a space where you can explore these complexities in a supportive environment, guided by coaches who understand the unique challenges women face in dealing with ME/CFS and Long Covid.

Until we meet again, keep questioning, keep exploring, and most importantly, keep advocating for a more nuanced and personalized approach to healthcare. Because when it comes to conditions like ME/CFS and Long Covid, one size most definitely does not fit all.

Wanda Belisle