The Medical Scandal Behind Chronic Fatigue Syndrome

In Jean-Marc Vallée’s 2013 biopic Dallas Buyers Club, Matthew McConaughey plays Ron Woodroof, a bigoted rodeo cowboy who was diagnosed with AIDS in the 1980s and given just thirty days to live. Faced with social ostracism and rapidly declining health, Woodruff reads up on his disease and launches a “buyers club” in Dallas to peddle unapproved treatments to desperate patients in defiance of the medical establishment. By the end of the film, he has become a spokesperson for a community he once despised and a sort of folk hero. Despite the liberties that the filmmakers take with Woodroof’s story, Vallée’s film accurately captures the historic arc of HIV/AIDS advocacy, from medical neglect and stigma though reluctant acceptance and study to recognition and treatment. What was once a death sentence is now a disease with which most infectees can live a long and fulfilling life.

I hope that understanding of my own condition—Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (clinically, ME/CFS)—will follow a similar trajectory. ME/CFS disables tens of millions of people worldwide, but there are no FDA-approved treatments yet and study of the disease receives barely any public research funding. Patients are regularly misjudged and disbelieved by medical professionals and the wider society, so they must seek alternative treatments in the absence of standardised care, and fight to receive compassion and recognition.

ME/CFS has been called “one of medicine’s most neglected diseases” and “the greatest medical scandal of the 21st century.” It drains the sufferer of cellular energy, erodes his basic physical and cognitive functions, and collapses all aspects of his life. Its defining symptom is something called post-exertional malaise, a measurable physiological intolerance of minimal physical or even mental exertion that inflames all other symptoms. These can include headaches, brain fog, sleep issues, heart issues, stomach issues, and a number of other neuro-immune-related symptoms. Science journalist Ed Yong has said that post-exertional malaise amounts to an “annihilation of possibility.”

The explosion of ME/CFS cases during and after the COVID-19 pandemic appears to confirm a longstanding hypothesis that the condition usually emerges from an immune insult that attacks the nervous system. The illness can vary in severity and symptoms, and the absence of a known cause or diagnostic test has led to decades of unhelpful psychologising. A literature review in 2020 found that between a third and half of all general practitioners in the UK do not even consider the disease to be a distinct clinical condition, and those that do have no idea how to treat it.

Despite decades of evidence of ME/CFS’s biological roots, life-saving medical research and treatment has been hindered by the lingering view among doctors, researchers, and the general public that the disease is simply a product of the patient’s attitude and imagination. Although major public-health agencies now acknowledge the existence of ME/CFS, and although the disease is estimated to cost the US between US$18–50 billion a year in lost labour and medical expenses, it still receives very little research funding. In 2024, just US$10–13 million was earmarked for research into ME/CFS, and the total was even lower in 2025. (For context, in fiscal year 2022, Parkinson’s disease received US$259 million in research funding from the NIH.)

In 2015, a landmark report by the National Academy of Medicine revised the prevailing position of public-health agencies by acknowledging that ME/CFS is a severely disabling multi-system disorder of the body and brain that devastates millions of lives in the US and around the world. Poring over decades of studies, the report dismissed the notion that ME/CFS is merely a psychiatric issue, and noted that unsympathetic attitudes towards patients were often responsible for treatments like exercise therapy that only make patients worse. Most people still don’t know how serious and common this disease is. Another 2015 study found that ME/CFS has the worst health-related quality of life of any disease tested, including lung cancer, stroke, and schizophrenia. Beyond the symptoms themselves, sufferers have to cope with a lack of institutional and social support and the secondary effects of having a disease the world doesn’t recognise. Consequently, the suicide rate among sufferers is high.

Yet the name of the disease makes it sound no more serious than tiredness or burnout—nothing a good rest wouldn’t fix. This may sound like a trivial complaint, but it has been a source of controversy since it was first officially defined in the late 1980s. Until then, it was popularly known as Chronic Epstein-Barr virus (EBV) syndrome or Myalgic Encephalomyelitis, nomenclature that reflected the abnormalities found in patients after an outbreak at the Royal Free Hospital in London in 1955. Officially classified as a neurological disease by the World Health Organisation (WHO) in 1969, the US Centers for Disease Control and Prevention (CDC) renamed it “the chronic fatigue syndrome” in 1988, probably to quell panic about a novel infectious agent after an infamous outbreak occurred in Nevada near Lake Tahoe. The results of that decision have been deeply damaging. “Had the agency done nothing in response,” wrote Hillary Johnson in an article for the New York Times in 2009, “patients would now be better off.”

ME/CFS has more in common with HIV/AIDS than might be immediately obvious. Both diseases became endemic in the 1980s following earlier outbreaks, and like AIDS, ME/CFS appears to be caused by a viral infection that attacks the immune system and the brain. In different ways, sufferers of both diseases have been stigmatised for being ill—for a while, AIDS was nicknamed “gay-cancer” while ME/CFS is still sometimes referred to as the “Yuppie flu” (although, in reality, poorer people are more likely to contract the illness, like all infectious diseases). But while AIDS immediately became a public-health priority, ME/CFS was either dismissed or ignored, and it remains untreatable and largely unheard of. Today, according to the CDC, two or three times as many people have ME/CFS as have HIV/AIDS in the US. Due to advances in treatment, the life expectancy of HIV patients today is about 22 years longer than that of ME/CFS patients. And many hundred times more research funding is available for HIV/AIDS than ME/CFS every single year.

One of the reasons for these discrepancies is that much of the suffering experienced by ME/CFS patients remains invisible to the public. Some of the most severely ill patients are reclusive and too sick to protest, so we simply disappear from sight and are forgotten. And the symptoms of ME/CFS lie so far outside the realm of everyday experience that the illness can be difficult for healthy people to understand. The cognitive symptoms and loss of energy, meanwhile, make it difficult to explain what’s happening and it contradicts our intuitive understanding of disease, which is that the sufferer either gets better or he gets worse until he dies.

ME/CFS imposes challenges and costs on already strained healthcare providers, not least because it is ill-suited to a system that emphasises expertise in specific areas. And the lack of federal funding for research into diseases like these makes them a less compelling career choice for young scientists and doctors. “Societal dismissal leads to scientific neglect,” writes Ed Yong in the New York Times, “and a lack of research becomes fodder for further skepticism.” The few journalists who cover the issue typically only do so because they know someone who has it, or because they have it themselves.

Unlike AIDS, ME/CFS is not generally thought to be either fatal or infectious, but the data suggest that it’s both. In 2021, a 27-year-old ME/CFS sufferer named Maeve Boothby O’Neill died of malnutrition despite three separate hospital admissions because staff believed that her illness was psychiatric. This is not at all unusual. And the emergence of the disease in clusters around the world strongly suggests a viral origin.

A number of suggestive biomarkers have been found in sufferers of ME/CFS, but none of them is sufficient to diagnose the condition in isolation. These include decreased activation of the basal ganglia, proteins in spinal fluid, T-cell exhaustion, inflamed cytokines, overactive B cells, reduced blood flow to the brain and body, brand new allergies, the reactivation of latent viruses, measurable anaerobic exertion intolerance in two-day exercise tests, increased rates of cancer and heart failure, increased risk of miscarriage, significant decreases in IQ and other measurable cognitive deficits, high brain lactate levels and decreases in grey matter, mitochondrial dysfunction, and deficits in ATP energy production. Recently discovered blood and DNA markers may also have diagnostic potential.

However, medical providers and researchers tend to ignore objective biological findings in favour of unfalsifiable psychological explanations. The late NIH scientist and virologist Dr Stephen Straus did more than anyone at the highest levels of American public health to downplay the physical reality of ME/CFS, even though his own research uncovered a number of immunological abnormalities in these patients such as low CD4 count, higher viral antibody titres, autoimmune markers, and unusual levels of interferon (some of which are also found in AIDS patients).

Yet Straus bizarrely insisted that his own findings “may be secondary to an underlying neuropsychiatric disorder which affects immune system function indirectly.” In 1988, a New York Times article about the disease reported: