1 | 17

Develop symptoms in the pre-war, pre-science, pre-suffrage years and you might be diagnosed with neurasthenia, neurosis, or just plain insanity ⁹.

2 | 17

Several outbreaks of a condition presenting with muscle fatigability, tender lymph nodes, sore throat, and neurological problems occur around the world ⁹. Medical journal The Lancet assigns the disease a name that many still use today—(benign) Myalgic Encephalomyelitis—and the WHO goes on to recognize it in 1969 ⁹.

3 | 17

After noting a higher prevalence of the illness in females and a lack of physical signs in patients, British psychiatrists Colin McEvedy and Bill Beard conclude that the outbreaks were nothing more than mass hysteria ⁹. Their work is later discredited, but it's not before causing irreparable harm to the perception of the disease ⁹.

4 | 17

Symptoms present in 259 patients in a Nevada resort town, alarming local doctors, attracting national media coverage, and setting off ripples of anxiety in the public ⁴. The CDC takes their time dispatching two researchers to investigate and rumors swirl that the health agency isn't taking this seriously ¹².

5 | 17

The CDC coins the term “Chronic Fatigue Syndrome” to refer to the disease ⁹, which some suggest is a highly strategic decision meant to temper the public’s fears about the outbreaks ¹². The name does more than that though — it trivializes and stigmatizes those suffering for decades. Academic journals characterize the affected as burnt-out feminists ⁶, and the illness is continually referred to in the media as “Yuppie Flu” ².

6 | 17

ME/CFS is housed in the National Institute of Allergy and Infectious Disease at the NIH, but its chief investigator, Dr. Stephen Straus, is hardly on board with it. He claims that patients have “histories of unachievable ambition” and “poor coping skills” ²², and hopes that this notion of a “discrete form of a fatiguing illness” will disappear ²³.

7 | 17

The CDC spends a majority of the $23 million earmarked for research on ME/CFS on other things—and then lies about it to Congress ²⁵. For this felony, the CDC receives a slap on the hand.

8 | 17

ME/CFS is placed in the Office on Women's Health at the NIH, where it stays until 2016. While it’s true that ME/CFS affects 3 times as many women than men ¹, 90% of people with lupus are women ²⁸ and 2-4 times as many women than men have multiple sclerosis ³⁰. Neither of these diseases were ever housed in the Office on Women's Health, an office that does not receive appropriate funds or attention.

9 | 17

The journal Science publishes a study reporting an association between ME/CFS and a retrovirus called XMRV (in the same class of viruses as HIV) ²⁶, the first really promising update in a long time. People with ME/CFS get their hopes up and the entire medical community is paying attention, but XMRV turns out to be a mere laboratory contaminant ⁵, and ME/CFS is completely dismissed once again.

10 | 17

People with ME/CFS insist that their symptoms flare with activity, but the medical community still won't listen. The UK funds a £5 million study known as the PACE Trial, offering participants cognitive behavioral therapy and graded exercise therapy to combat their “false illness beliefs” ²⁹. When the study is deemed a success, these treatments are adopted by medical professionals worldwide, to the horror of the ME/CFS community who begin filing suits to see the data ⁷. The PACE trial is later debunked as junk science, but not before causing irreparable harm.

11 | 17

Despite being a common disease with the worst quality of life out of any other condition, ME/CFS ranks 231 out of 244 in funding in NIH spending. This year, it receives $5 million from the NIH, less than hay fever. ²¹

12 | 17

The National Academies of Medicine publish a 282-page report called, Beyond Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Redefining an Illness, analyzing the current state of ME/CFS in the United States. It concludes that ME/CFS is a serious, physiological, chronic illness that we know far too little about—but that the hallmark of the disease is that symptoms flare with exertion, contrary to the still-cited PACE Trial ⁹.

13 | 17

The NIH launches its first significant in house study on ME/CFS—32 years after the disease first appeared on their radar ¹⁹.

14 | 17

More than two full years after the National Academies of Medicine report is published, the CDC completely removes the PACE recommendations of graded exercise therapy and cognitive behavioral therapy as treatments for ME/CFS from their website. They neither draw attention to this nor describe the multitude of people with ME/CFS in the United States who say they've been permanently harmed by these modalities ²⁰.

15 | 17

Jennifer Brea’s documentary film, Unrest, raises new awareness about ME/CFS and advances efforts toward lobbying in the US and around the world ²⁴. The CDC screens the film in Atlanta and refers to ME/CFS as a “hidden health crisis” ¹⁶, a day longtime activists remark they never thought would come.

16 | 17

SARS-CoV-2 spreads around the world, bringing with it lockdowns, fear, and death. But those aren’t the only things. A large percentage of people experience a post viral syndrome with many symptoms called “Long COVID”. And as many as 45% of people with Long COVID fit the case definition for ME/CFS ¹³, dramatically increasing the disease prevalence.

17 | 17

Funding for the disease is still minuscule at $13 million annually, and a FDA approved treatment has yet to materialize. When will the US government finally listen to people with ME/CFS and right this wrong?