Grieving for loss of life: the untold ME/CFS – from silent, darkened rooms

In silent darkened rooms where millions lie, the world turns unaware of profound loss of life. myalgic encephalomyelitis (ME/CFS) is not just a disease. It takes lives.

While the stories that make the headlines often feature young, beautiful women whose promising lives are cut short, there is a vast ignored population of older sufferers whose lives have been equally devastated for much longer. Their stories too, deserve to be heard and acknowledged.

ME/CFS is a long-term (chronic), fluctuating, neurological disease that causes symptoms affecting many body systems, more commonly the nervous and immune systems. ME/CFS affects at least 1.2 million people in the UK (likely an underestimate) and at least 65 million people worldwide – if not far more.

Ruth’s story: a lifetime stolen by ME/CFS

Ruth will turn 60 next year. As a runner and cyclist with dreams of becoming a marine biologist, her life was irrevocably altered at the age of 14.

After contracting glandular fever, her future became decades of debilitating illness.

For 45 years, Ruth has endured the relentless grip of ME/CFS, a fluctuating disease not only widely misunderstood but often dismissed as psychosomatic.

Her journey through the healthcare system is marked by disbelief, misdiagnosis, and neglect. From being prescribed antidepressants to treatments like graded exercise therapy (GET) and cognitive behavioural therapy (CBT) that worsened her condition, Ruth’s story is the reality of systemic failure of a system that millions of ME/CFS sufferers face.

In 2018, Ruth’s condition deteriorated to the point where she could no longer sit up or eat, or to tolerate light or sound. Hospitalized, she received no meaningful treatment or advice. Sent home, her plight continued in isolation, a common reality for many with ME/CFS who are forced to endure appalling symptoms alone, away from a medical profession that often gaslights and stigmatises them.

The contrast: young faces in the media

The media often gravitates understandably towards stories of young, beautiful women whose lives are suddenly and tragically halted by ME/CFS.

The striking before-and-after images of vibrant dancers, skiers, and fashionistas transformed into small, grey shapes confined to darkened rooms evoke immediate sympathy and empathy. These narratives are powerful and poignant, and shed light on the severe impact of the disease.

However, this focus leaves out a significant part of the ME/CFS community: the older women and men who have battled this illness for decades, whose stories are equally heartbreaking but never told. They were once young, vibrant people too, with dreams and aspirations that were crushed by ME/CFS. Their lives should not be diminished in value by age.

A collective grief

Ruth is not alone. Her story is typical of the unseen majority who retire to darkened rooms. Most sufferers learn to avoid seeking medical help, having learned first that there is none and second that disbelief and cruelty are often the response to their suffering.

Decades of terrifying symptoms are borne in apparent silence.

The energy required to protest or even ask for help is something many sufferers do not have.

The advent of the internet has provided a valuable platform for shared experiences and hedge treatments. The voices of the voiceless are now there to be read.

The loss experienced by those with ME/CFS is colossal. Not only do they lose their health, but they also lose the ability to participate in life’s joys and important milestones. Birthdays, weddings, and funerals pass without their presence, replaced by their daily struggle for survival. Families grieve for the lost potential of their loved ones. Alongside the loss of life of the carers who devote time, energy and resources sometimes for decades.

Ruth lost the children she decided not to have as she was not well enough to look after them. She lost her career in marine biology as she was not well enough to go to university. She lost friends, a husband, and even a sister who eventually said, “I believe you believe you are ill.” This is a profound loss of a life.

The scandal, not just the medical issue

This is not just a medical issue; it is a profound scandal. Benefits are often withheld, and those with ME/CFS are left to navigate their debilitating condition with little to no support. Their poverty causes further physical suffering.

Dr. Nancy Klimas, a renowned expert in the field, says:

There’s evidence that ME/CFS patients experience a level of disability equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, or patients with multiple sclerosis. The only difference: NO treatment for ME/CFS.

How much clearer could the need for recognition and action be made?

Forty-five years after Ruth became ill, and even after a global pandemic highlighted the long-term consequences of viral infections, the architects of neglectful policies are often unchallenged. Even when they wilfully ignore NICE guidelines. Meanwhile, lives continue to be lost in the shadows, as those affected by ME/CFS and now Long COVID endure their lives half-lived.

The parallels with other public health disasters are striking. Like the Horizon scandal, the contaminated blood scandal, and the Grenfell tragedy, the plight of ME/CFS sufferers is a humanitarian crisis that demands accountability.

We must take action on ME/CFS

As we grieve for the lifetimes lost to ME/CFS, action must be taken. It’s time to bring this tragedy into the light, to demand that the medical community, society, and policymakers address the suffering of millions. Only then can we begin to heal the profound wounds inflicted by decades of disbelief and neglect. The loss of life caused by ME/CFS is a tragedy that must no longer be ignored.

Featured image via the Canary