LIVE, LEARN, & LOVE SERIES #32. What about ME (Myalgic Encephalomyelitis)?

LIVE, LEARN, & LOVE

Do you take delight in watching films or listening to pop music? For English learners, movies, songs, and books are one of the he most wonderful sources to explore the language! You can indulge in your favorite pastime and still learn some expressions, words of wisdom, and oftentimes good lessons while you’re at it.

# 32. What about ME? (Documentary Film, 2016)

This documentary film follows a six-year journey of exploring a mysterious disease called “Myalgic Encephalomyelitis” (ME) that affects twenty million people and still has no cure. These people have been misunderstood as malingerers who lack ‘will power’ to manage their own bodies or might have psychological problems by the medical and constantly ignored by political authorities.

 

“(ME patient): People say “you don’t look sick. You need to get up, get out, and do something. Then it’ll be gone.” That is not true. I’ve had this for 20 years. I lost four friends to this disease.”

ð  Because the patient does not appear visibly disabled, they often experience dismissal or “gaslighting” from friends, family, or society. The speaker is challenging the false belief that their condition is merely temporary “laziness” or sadness that can be overcome through willpower, exercise, or pushing oneself to stay active. Claims that it can simply be willed away overlook the biological basis of ME/CFS, where physical activity can trigger PEM (Post-Exertional Malaise), causing a significant worsening of symptoms.

This is a clear and firm rebuttal grounded in personal experience. This invisible illness is not behavioral; it is a physical, frequently debilitating neuro-immune disorder. The speaker stresses that this is not a short-term issue but a long-lasting, debilitating condition that has persisted for decades, countering the assumption that it is temporary. That is, this disease can be life-threatening, not just chronic. Individuals may die from complications, organ failure, or the extreme burden of symptoms combined with insufficient support. By sharing this, the speaker emphasizes that telling patients to “just get up and do something” is not only dismissive but also harmful, as it ignores the serious and potentially fatal nature of the illness.

 

“(ME patient) It feels like you were wearing a fisherman’s big old wellies filled with water….and some idiot was blowing your brain up with a pump.”

ð  This describes an intense sense of exhaustion in the limbs. “Wellies” (Wellington boots) are already heavy, and imagining them filled with water adds extra weight, making every movement feel slow and difficult. It conveys the sensation of struggling against gravity or moving through thick mud, where actions like walking, lifting your legs, or even standing require immense effort.

It reflects a feeling of being weighed down or submerged, turning even simple daily tasks into something that feels unmanageable.

Similar to the sensation of the brain being inflated, the patient’s word “idiot” with the pump symbolizes a chaotic and intrusive sensation of being mentally overstimulated while physically drained. It can also serve as a metaphor for neuroinflammation, where the brain feels too large for the skull, contributing to discomfort and impaired function.

 

“Dear doctor,

Your comments are doing nothing but destroying any hope of finding a cure for this disease. It is a living nightmare and your lack of basic human compassion.”

ð  The quote conveys the deep frustration, hopelessness, and anger experienced by patients who feel their condition is being worsened when medical professionals dismiss their physical symptoms and fail to offer basic empathy.

 

“There are still no answers, leaving a sea of sufferers and the world of population at risk. They (the medical field and politicians) need to know the consequences of their inaction.”

ð  Unfortunately, both healthcare systems and government institutions have fallen short in acknowledging the seriousness of the condition, as well as in providing sufficient research funding and effective treatment options.

 

**Jean’s Small Thoughts:

While watching the documentary, I found myself thinking about anyone whose truth has been dismissed or ignored simply because their condition isn’t visible. When those truths involve severe, life-threatening symptoms from a poorly understood illness, the experience must be deeply painful and uniquely frustrating in a way that few people can truly comprehend.

From the film, I learned that Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS), is significantly underfunded despite its substantial impact. This is largely due to long-standing stigma, the lack of clear diagnostic biomarkers, and its frequent mischaracterization as a psychological condition. Even the term “Chronic Fatigue Syndrome” has minimized the seriousness of the disease. Limited research funding has created a cycle in which insufficient data leads to fewer strong grant proposals, perpetuating ongoing neglect.

Patients often express that there is still widespread misunderstanding, persistent pain, and enduring stigma surrounding their condition. All my admiration goes to the British director of this independent film Susan Douglas and her courage to raise awareness about ME against all odds from all the powerful and negligent institutes and government authorities.