Failure to Fund, Part Two
ME is medicine gone off the rails. I suspect the history of the disease—the intense denialism, the theft of research funds and the diversionary tactics by public officials—will be analyzed and deconstructed for decades, possibly centuries, once the actual cause of the disease is found. The ME story will make Barry Marshall’s discovery of Helicobactor pylori as the cause of stomach ulcers, for which he became a Nobel Prize Laureate after years of derision, look like a Romper Room tale. It might even make the story of Ignaz Semmelweis, who begged his medical colleagues to wash their hands in between delivering the babies of living women and performing autopsies on women who had died of childbirth fever, pale by comparison.
In the examples above, doctors stubbornly refused to give up their habits, they thought they knew better, they thought Semmelweis was crazy and they had never before heard of germ theory. Unlike these fascinating histories that are baked into medical lore, however, the ME story cannot be tossed off as an example of ignorant, stubborn or “sexist” doctors.
These too-glib explanations fail to name the players and their chessboard moves that ended the hopes, dreams and contributions of a generation and threatens to do it all over to another generation and the one after that.
The ME story is not even about science and medicine. It’s a deeply political story about government seeking to control the discovery process based on political expediency instead of science, all on their timetable, an effort now in its second generation. The U.S. government’s obsession with renaming ME, its administrators’ perpetual striving to cast the disease as trivial—a malady we can afford to leave on the sidelines as long as necessary—is but one example of the political nature of the exercise, but possibly the most pertinent to any discussion of funding research.
Why does the government remain so determined, decades on, to bury the name myalgic encephalomyelitis? By accounts, the CDC is pushing SEID again, not unlike it pushed “chronic fatigue syndrome.” In fact, CDC decreed “CFS” in 1988, virtually branding it into the flesh of patients with a formal journal article three years after the Incline Village, NV outbreak. A generic symptom common in cancer, viral infections, neurological diseases and even depression—fatigue—was diabolically substituted for ME.
You couldn’t run, you couldn’t hide from “chronic fatigue syndrome.” Patients were denied medical care for another three decades and learned to lie as a form of self-preservation (“How are you?” “I’m fine!”) because they couldn’t expect anyone to begin to comprehend what had actually happened to them given the federal propaganda filtering onto the women’s pages. I’m thinking of the New York Times’vitamin reporter Jane Brody’s memorable 1988 story about the relationship between tiredness and depression, my first real clue that a kind of nuclear winter was descending. Brody chose as her source the NIH’s chief propaganda agent, Stephen Straus.
How many times in the three decades since then have I read the headline “Sick and Tired of Being Sick and Tired?” I can’t hit “delete” fast enough.
In recent years, the government seemed willing to append “ME” to the acronym “CFS" in some kind of concessionary but ultimately meaningless act. But even that was not to last. People who keep their eyes on the federal health agencies may have noticed that after abruptly abolishing the unique, bi-annual crying fest in the capitol formally known as CFSAC, the agencies began working hard to brand “SEID” into the lexicon not unlike they did “CFS.” I’ve yet to hear the word spoken so I don’t know whether it rhymes with dead or died, though someone has noted that when spelled backward SEID becomes DIES.
The government’s effort is underway despite SEID’s parallels with the dreaded slave name foisted on ME victims in 1988.
Post exertional malaise, too, is a symptom or perhaps a collection of symptoms. But, seriously—is it exclusive to ME? Has there been any systematic, controlled exploration of PEM in, say, brain cancer, Parkinson’s, ALS, MS, TB, heart failure or any number of other famously debilitating diseases? Ask a group of people with heart failure to undertake a two-day bicycle challenge and see what happens to them before suggesting PEM is exclusive to ME.
I wonder how much the Feds are spending to legitimize SEID? What’s it worth to them?
Again, these are not decisions being made by sexist doctors. They are decisions being made by the highest level administrators at the NIH and CDC—policy setters who influence spending priorities.
Leave it to the U.S. government to disappear ME with a symptom (or symptoms) that require jeopardizing the patient’s already fragile hold on life, an induced, physical calamity that was invented to prove to flat-earthers and insurance companies that ME is “real.” A few years ago I was present during a session in which three Canadian women underwent the bicycle challenge. One of them ended up in the local ER, unable even to finish the first day’s test.
Some researchers who perform the CPET, the tortuous two-day bicycle study, note that it's now the only route to obtaining disability from the Social Security Administration, that it prevents homelessness, a fate worse than a trip to the ER or a few weeks or more of exacerbated disease. Maybe so. I don't know how to argue this point, except to say that from my vantage point it looks like a continuation of the barbarism the government creates and supports around ME. The SSA has had thirty-five years or more to figure out that ME is disabling given ME has become one of the most common disabling diseases. Why does the SSA feign ignorance? Why isn't the diagnosis enough? Sufferers are left with extreme options. In addition, living on SSA disability support in the current US economy is increasingly difficult and in the future may not ward off homelessness. The fact that severe disability is a ticket to extreme poverty in this country is its own topic.
Anyone pondering these realities must ask: What about the name ME is so radioactive?
Today's equivalent of the NIH (the CDC did not yet exist) was alerted to ME in the early 1930s. The disease broke out in the Los Angeles county hospital during a city-wide polio epidemic. It's considered the "first" outbreak. That’s the received wisdom, anyway. It’s likely that the disease was recognized as a discrete entity in L.A. because it occurred in a large hospital filled with doctors and nurses, many of whom fell ill. But that’s not to say other outbreaks might have occurred elsewhere in earlier years or decades and gone unrecorded. ME may have been passed around within a particular animal species for millennia then jumped into a human. All sorts of events we don’t yet know about may have occurred to launch the pathogen into the human population, then cause it to explode in pandemic form precisely when AIDS exploded—a remarkable coincidence--or not. That's a phenomenon that just sort of hangs out there, unaddressed publicly by government policymakers. It’s a critical question, the answer to which might explain something important about both epidemics.
After ME was described in Los Angeles, the disease continued to be recognized in discrete or “cluster” outbreaks throughout the next several decades. A record of these outbreaks exists because patients were examined and carefully observed by clinician-researchers of the era, one of whom, British doctor A. Melvin Ramsay, gave the disease its Latin name in 1955 based on its universal signs and symptoms: muscle pain and brain inflammation. Is there complete certainty that Ramsay’s ME is the same disease that began to disable millions of people in the 1980s? No. Identification of the causative pathogen would tell us, however. There are a few survivors from earlier epidemics who are still living. There may be frozen blood samples from these epidemics—has anyone really looked in any systematic way? Every survivor from earlier outbreaks should be found and have their blood drawn immediately, no matter. If there were professional epidemiologists involved in the study of ME, or if the CDC had taken the disease seriously to begin with, that would have been done decades ago.
Let’s assume until proven otherwise that today’s ‘ME” is yesterday’s ME. If so, what’s most important is this: investigators who studied ME in its real-life setting, whether a hospital, a convent or town, recognized it as an infectious disease.
The late Donald Henderson, for instance, who is universally credited with the world-wide eradication of smallpox, investigated the Punta Gorda outbreak in the 1950s. At the time, Henderson was head of the CDC’s Epidemic Intelligence Service. Near the end of his work in Punta Gorda, according to an account from the period, Henderson would sit in his hotel room at night, head in hands, worrying about whether he should return home directly from Punta Gorda. He was terrified he might transmit the disease from the Punta Gorda patients he had interviewed in his door-to-door survey to his wife and children.
Given my long observation of the history of this disease, I can only interpret the government’s ardent desire to bury the name ME as a need to deny its communicable aspect. Determining causation, typically a fundamental matter in any effort to eradicate an infectious disease, has slipped away in recent decades, especially as regards ME, in fact, maybe as a direct result of the ME epidemic. A few scientists are finding evidence that a human herpes virus, possibly HHV6, may cause Alzheimer's, after decades of NIH grant money, billions of dollars, have been spent studying physical brain abnormalities in the disease--tangles and tau. The viral research suggests that the long-studied "tangles" seen in the brains of patients actually may be the brain's immunological response to a virus. Resistance to the idea that a microbe might cause this increasingly common malady is already strong.
If the government ever puts its official stamp of approval on the once widely accepted and original name ME—presumably the medically correct name—the infectious aspect of ME will become obvious to anyone who reads the now-historical medical literature. The government desperately doesn’t want your disease linked with the ME literature of yore, with the exception, no doubt, of the literature of McAvedy and Beard, psychiatrists who in the 1970s looked back and then wrote a paper pronouncing the disease was hysteria due, in large part, to its preponderance among women. As long as ME can be posited as a non-infectious disease, perhaps "springing from the id," as Paul Cheney once joked, the status quo remains unaltered and the disease continues to thrive, with children and young adults in their prime, mostly women, being taken down and destroyed in the hundreds of thousands and ultimately millions.