'Greatest Medical Scandal of the Century'

And no one really knows or cares.

Lily-Rose Depp in Nosferatu (2024), rendered on Canva

Look, we can theorize all this, but there are very large numbers of people suffering to an absolutely outrageous extent — most of them women, though not all of course — with very long-term conditions which have absolutely horrendous impacts on their well-being. And the fact that this is not one of our very top medical priorities is itself a massive scientific scandal.

~ George Monbiot, in conversation with David Tuller.

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I wanted to check in with whoever’s still here and let you know where I’m at in life and health. After suffering another cognitive and metabolic degeneration from my neurological disease — part of a larger pattern unfolding over the last decade or so — I had to let go of the daily writing practice that’s been keeping me going all these years, really the closest thing I’ve ever had to a career or livelihood. Now I’m largely in survival mode, seeking medical help across the American Southwest and learning as much as I can about my disease while being proactive as possible about treatment. When I’m not on the phone with doctor’s offices or health insurance or dealing with other necessary bullshit, what energy I have is mostly spent reading articles and listening to talks about Myalgic Encephalomyelitis (I can almost spell it now), known by most, to my endless frustration, as “Chronic Fatigue Syndrome.”

It may seem strange, but I was never particularly interested in learning about my disease. Most days, I’d rather think about anything else. Had I managed to even partially recover, I would’ve happily moved on with life and washed my hands of the whole issue, making overwrought film essays and genre scripts in my own little vacuum for the rest of my days.

But whenever my condition worsens, the urge to get involved in patient-advocacy deepens, and it only makes sense now to bring together my efforts to recover with the larger battle around this disease. The reality of complex pathogenic chronic illness is an urgent issue of morality and science, with all sorts of broad-reaching implications for medicine and society, that simply isn’t sexy enough to garner the political and cultural focus it needs right now. This is a tremendous human rights catastrophe where people with a devastating illness are being actively denied treatment and recognition for no good reason at the cost of millions of lives, in what Guardian columnist George Monbiot has called The Greatest Medical Scandal of the 21st Century, and it’s worth caring about.

Short of some new miracle super-drug, it’s over for me, I’m already gone: only pain and death remain. What matters to me now is the next crop, that confused teenager out there who, like me, comes down with a nightmarish illness that the world has seemingly conspired to ignore or sneer at, and to do everything to ensure that, unlike me, that kid gets the treatment and support they need.

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It was clear from the moment I got sick at eighteen years and started seeing doctors in 2012 that something very strange was happening around this disease, and it was bigger than me. When that Infectious Disease specialist gave me that creepy grin and told me I had to ‘deal with my demons’ — without offering any path to doing so — it was clear that my suffering was being profoundly dishonored, that I was getting fucked in some larger impersonal way.

In 2015, following decades of denial and psychologizing, major public health institutions finally came around on the overwhelming biomedical reality of ME/CFS after the National Academy of Medicine reviewed over 9,000 studies to determine it was, yes, a multi-system disease that is almost always preceded by an immune system challenge. I had no way of knowing that a controversial paper in The Lancet known as the PACE Trial — wrongly purporting to prove that ME patients can be cured by therapy, exercise and a firm kick in the keister — was published the year prior to my onset and was setting the tone for this lack of treatment.

The most expensive study on the disease to date, PACE, part funded by the UK’s Department for Work and Pensions — which determines who’s eligible for the dole — has since been powerfully repudiated by scientists, journalists, doctors, politicians and academics alike, for, among other glaring issues, altering the threshold for ‘recovery’ during the study to artificially boost patient outcomes. Leaving aside the fact that more than one PACE author had ties to insurance companies in a clear conflict of interest that was illegally withheld from study participants, an independent NICE review later found studies promoting graded exercise and cognitive behavioral therapy for ME/CFS to be either of “low” or “very low” quality, always unblinded, always based in subjective reports rather than objective outcomes. In fact, these treatments are actively harmful in most cases since the defining feature of ME is that even small amounts of exertion can significantly worsen your condition. Ask Australian ME patient Alem Mathees. Oh wait, he’s barely able to speak, eat or move anymore.

Alem Mathees, who’s Freedom of Information Act request exposed issues with the PACE trial after graded exercise made his condition permanently worse in the process of accessing disability benefits (see full story here)

It smells a lot like the study was designed to get the result that was good for insurance companies and governments and bad for patients seeking medical treatment and disability support. And yet PACE was swallowed whole by much of the medical world, because it saved a ton of money and trouble that would’ve otherwise been spent looking at and treating the actual disease. That’s despite the fact that Myalgic Encephalomyelitis — which literally means muscle pain and brain/spinal cord inflammation — has been classified by the World Health Organization as a “neurological disease” since 1969 after previous studies found a “pattern of abnormalities in spinal cord fluid and brain ganglia in patients,” not to mention countless other neurological, immune, metabolic, endocrine, cardiac, and gastrointestinal abnormalities and the consistent presence of viral pathogens uncovered in subsequent decades.

But none of this mattered when I first got sick. The world is always looking for reasons to dismiss any suffering it doesn’t understand. That Infectious Disease doctor still works at that hospital, last time I checked.

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The advocacy case for ME and similar chronic conditions is powerfully simple: There exists an illness or cluster of illnesses that emerge and persist after an infection or immune stressor, attacking the central nervous system and causing a ridiculous amount of suffering — largely from a devastating loss of cellular stamina and cognitive function — to a ridiculous amount of people: This is not a rare disease. It comes with a tremendous economic and spiritual toll for individuals and societies, and for reasons both complicated and uncomplicated but all entirely human, has been horribly underserved in medicine and society for many decades now. There is no FDA-approved treatment or reliable testing for ME and it’s afforded very little research funding and public concern: These facts are connected.

The name itself, Chronic Fatigue Syndrome, was conjured by people who did not believe it was a discrete illness precisely because they did not believe it was a discrete illness, which is why the name seems so trivializing and over-general. Everybody gets tired sometimes.

Advocates simply want this disease to be treated like any other serious condition, that’s it, to have comparable funding and awareness for ME as HIV/AIDS or cancer or Multiple Sclerosis or Parkinson’s or pretty much any mental illness, in proportion to the disease burden. I cannot stress enough that, for decades, ME/CFS has been granted only around $5 million a year in research by the NIH (now it’s up to $15 million), a good deal of which was misspent on psychiatric approaches, while HIV/AIDS has stayed somewhere in the ballpark of $4 billion a year — creating a vicious spiral of ignorance where less recognition means less funding and less research and thus less findings and treatment and recognition and so on.

Yet we know from a slew of morbidity studies that ME has one of the worst quality of life measures of any serious illness, comparable only to the final stages of terminal illness, except it’s a permanent state. The suicide risk is unsurprisingly high for ME patients, around seven times that of the general population and occurring at a significantly younger age than average — the life expectancy is only 55 — much of which, according to a recent Switzerland study, comes down to the lack of disease recognition and inadequate patient support. This is the greatest medical scandal of the century.

The counterargument from skeptics — that tens of millions of people around the world in completely different places and walks of life and ages, many of them young and previously high functioning, are affecting the same set of symptoms out of some kind of hysteria or misbegotten belief in being sick — just strikes me as really bizarre and counterintuitive and basically unserious. The precise mechanism by which perfectly healthy people can inwardly induce severe debilitating symptoms that persist for the rest of their lives is never made entirely clear.

There’s a whole foul history of the medical establishment attributing once poorly understood diseases — especially diseases predominantly affecting women or marginalized groups — to individual psychological factors, from the belief that cancer was caused by emotional repression to the idea that HIV/AIDS came from the ‘stressful gay lifestyle’ or that Multiple Sclerosis was a form of hysteria, until the science and technology came round to prove otherwise.

For decades, patients suffering from this horrifying neuro-immune disease have been told they are not really suffering from anything, that this is all happening in their heads, that on some level they want to be sick — that they are at once to blame for their symptoms and that their illness doesn’t exist. I have no problem acknowledging that, due to the lack of diagnostic testing for ME and other such diseases as yet, some small amount of people who claim to have them will either have some psychosomatic issue or another disease entirely. But if the skeptics were to acknowledge that some people do have the disease, their whole argument looks halfhearted and ridiculous: If the illness exists, why, in contrast to every other condition we know of, would only a small number of people with symptoms actually have it? So they must deny its very existence and say that everyone who claims to have it is basically nuts. And if you are really concerned about people getting bundled into this group who don’t actually have the disease, the obvious solution would be to study it more so we have tighter parameters and definitions — not to fall back on the harmful lie that ME is not a 'real' disease.

In short, the patient community is right to raise the alarm about the illness — asking for more funding, research and treatment — and the skeptics are wrong to deny its existence or downplay its seriousness or psychologize it into oblivion.

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It’s strange. ME patients are told we have mental issues, demons and such, yet are afforded none of the dignity or respect or treatment or concern that would come with an actual diagnosis of mental illness. And when we understandably react to being told that our illness is all in our heads, it is we who are accused of stigmatizing mental illness, not the people who are dismissing the disease as psychological and sending patients off to deal with their demons. And when we complain about this double-standard, when we react to bullshit studies, when we call out particular individuals, any pushback at all from the patient community is somehow meant to prove that we really are a difficult and ungrateful lot. As one nurse put it in a study of ME patients promoting psychiatric interventions, “the patient should be grateful and follow your advice [but] the patient is quite resistant and there is this thing like, you know, ‘The bastards don’t want to get better’.” [emphasis mine]

I’m sorry, does this align with anyone’s sense of reality: that sick and disabled people don’t generally want to get better? When they say we are an angry patient group, you’re goddamn right!

As longtime journalist and ME patient Hillary Johnson sharply observes, “It’s fascinating to me that government scientists speak with admiration about AIDS activists of the 1980s and 1990s. The latter stopped traffic on Wall Street, burnt effigies, threw condoms filled with ketchup at the NIH scientists on the Bethesda campus, and labeled Tony Fauci a murderer. When a few ME patients criticize an NIH paper on Twitter, the lead investigator has a melt-down.”

Much like HIV/AIDS and other politicized illnesses, patients have to get mean and nasty to get their point across, to convey how this is something we all have stake in and not just some alien thing. Take my case as a warning sign. If the world cannot deal with my demons, my demons will eventually deal with you.

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Anyways, I’m just another dirty, nasty, pissed off patient who’s probably going to meet an early grave because of some evil fucking illness that the world, for whatever reason, is not yet ready to see. But if I’m ever going to be a foot soldier in this Great War and do any kind of justice to this pain, now is the time to suck it up and hit back for all those who came before and will come after, for the right now and for myself, and for the lost ones. You can’t kill me, I’m already dead type shit.

Despite the grim portrait rendered here, the situation is a lot better than when I first got sick twelve long years ago. There’s been more interest and research generated over the past few years than in previous decades, some of which has to do with the increasingly-hard-to-deny reality of Long COVID (unless you think mice are especially prone to psychosomatic illness), a phenomenon that ME advocates actually predicted at the start of the pandemic. In a decade or so, there could conceivably be a whole new spate of treatments for ME sufferers. But it only would’ve happened, not due to the natural progression of science, nor the good will of the masses, but a growing cohort of extremely pissed off patient advocates who have absolutely everything at stake and are risking what limited wellbeing they have left to shed light on their long-maligned disease.