Language is about capturing. When it comes to medicine, the best of language — words that have and utilize significant societal weight – are the words that strike fear and terror in our hearts. Words and phrases like Amyotrophic Lateral Sclerosis (ALS), AIDS, Cancer, Cystic Fibrosis, Lupus, and Multiple Sclerosis.

Many of the semantics used for frightening diseases use Greek or Latin roots. These ancient, respectable words initiate immediate senses of dread for many non-sufferers. But the worldwide medical community has failed to adequately name an illness that shares alarmingly similar functional impairments with AIDS, and the consequences have been beyond devastating.

In 1984, an unprecedented outbreak of ME/CFS occurred in the Lake Tahoe region. It was far from the first of its kind. However, in an antiquated and very stupid act of dismissal, the CDC chalked the outbreak up to mass hysteria. ME/CFS wasn’t labeled AIDS Minor (as it was sometimes referred to at the time) or Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) and the seriousness of the condition failed to gain public attention and resulted in an ongoing paucity of research funding that continues to this day.

This is because since the name CFIDS (pronounced C-FIDS), when used repeatedly and in the right context, has potential to sound terrifying. Instead, the disease, with its lifelong disability and life-ruining destruction, was labelled “Chronic Fatigue Syndrome.”

No Latin or Greek roots, no fear-striking, no concern. Since 1984, the detestable name of Chronic Fatigue Syndrome has failed so miserably to capture the devastation of the condition, resulting in nearly zero interest, close to zero research funding, zero biological markers, zero effective treatment, and certainly zero cure. The result has been a loss of all hope of getting out of the black hole that is ME/CFS.

A couple of years ago, my own stream of consciousness was kind enough to grant me a term: linguistic anchorage. It’s what gives weight to words. Where there is no anchorage, there is no weight. Where there is no weight, there is no impact.

In 2015, a panel of ME/CFS experts attempted to rename the disease. The result was beyond disappointing: Systemic Exertion Intolerance Disorder. It was clunky, awkward and presented the same problem as Chronic Fatigue Syndrome. It was yet another euphemism for laziness and fortunately it failed to gain traction.

Seabiscuit author Laura Hillenbrand wrote about her experience with ME/CFS. In the late 1980s and early 1990s, she was so weak that she was unable to shower for months. When she finally got the strength to wash herself, she reported the dead skin sloughing off her body due to spending so many months in bed, nearly paralyzed. During her months-long confinement to her bed, her closet was cleared of many sentimentally valuable items by disbelieving “helpers” and her feet had atrophied so severely that she went down two shoe sizes.

Hillenbrand said that when her condition was deemed by medical professionals as “Chronic Fatigue Syndrome,” the language, she said, was “a slap in the face.” I can’t possibly agree more.

In the US, there exists a classic children’s book called Alexander and the Terrible, Horrible, No Good, Very Bad Day. It’s a cute and comforting tale of a young boy who has an unfortunate day. He goes to school and does poorly on a math test. At recess, he is bullied for no good reason. There is also talk of his ice cream falling off its sugar cone, and, in defiance of all physics, lands a world away, in Australia.

But I feel I have a much more profound example of something that is terrible, horrible no good and very bad: the name “Chronic Fatigue Syndrome.” This name is so trivializing that it has caused my heart to pound with rage countless times over the many years of my own struggle.

Anger and rage are cruel things, but they are necessary for survival and for justice.

Even the much-revered Mayo and Cleveland clinics are still telling patients to exercise more and receive psychotherapy. Because talking to a therapist will certainly cure you of your viral-onset infection. And the lymphoma you could very well end up with? That’s your fault too for being emotionally unstable and having a shattered mental state.

I would like the ask the CDC how they explain how a viral infection that often leads to lethal cases of lymphoma is all brought on by “false illness beliefs.”

I can understand how, in 1984, the ME/CFS phenomenon was initially misunderstood. But it’s no longer the mid-1980s, and the fact that no, and I mean absolutely NO progress has been made in more than 40 years is unacceptable.

Dear CDC and NIH, you are all professionally trained, and yet you’ve given our devastating condition untouchable status. You have had ample time to investigate, research, treat and save countless lives. Instead, you have pushed us aside in a negligence that borders on eugenics.

Nice job, CDC. Nice job putting more money towards researching erectile dysfunction and people whose eyelashes are growing too slowly (yes, this is actually a thing).

You have neglected the very population you are so authoritatively tasked to serve. Nice job. You’ve outdone yourselves.

And, just for the record, I hope your ice cream falls off its cone and lands not in Australia, but on a whole different planet. One in which viral illnesses cause psychological problems that eventually lead to lymphoma.

I am choosing to stay here, on Planet Earth, where informed researchers like Ron Davis and remarkable journalists like David Tuller and Ed Yong are calling attention to mitochondrial dysfunction and other physical causes for ME/CFS.

The psychological narrative needs to be wiped clean out of this conversation. We will prove your delusions wrong and when we do so, your humiliation will be well deserved.

–Bridget O’Shea