"...as difficult as they might be."

Can you say Class Action?

Copyright 2024 Hillary Johnson. All Rights Reserved.

Journalist Neenyah Ostrom’s new newsletter for Substack, “Why Must Americans Resort to Lawsuits to Get the Truth About Their Illnesses?” describes patients’ legal actions that seek compensation for harms resulting from toxic effects of AIDS drugs and the poisonous dust inhaled by New Yorkers after 9/11.

In the same column, Ostrom also addresses the neglect of ME that has left at least two generations of seriously ill Americans without medical care or treatments. Myalgic Encephalomyelitis began stalking children and adults in widespread, epidemic form in the earliest days of the AIDS epidemic. These diseases emerged contemporaneously forty years ago this year.

She asks a question that has puzzled me for decades: although ME sufferers are in possession of hard evidence of gross federal malfeasance and negligence, resulting in myriad harms both physical and financial, why have ME patients failed to seek remuneration from the government? I’ve always felt the government’s mishandling of ME has left it exceedingly vulnerable to class action and individual lawsuits by ME sufferers and their families.

Yet, historically, ME patients and their supporters have preferred to use any available philanthropic money to either support patient advocacy organizations, groups that historically have acted in lock-step with the government, or individual researchers and their foundations.

To some degree, the latter has resulted in the emergence of personality cults, with a few researchers directly courting patients for donations. The more relatable and people-friendly the scientist, the more popular. There is nothing intrinsically wrong with this. There are some great researchers in the ME field. But the government should be paying for the bulk of research, not patients or their supporters. And in a rational world the government would be making decisions about who gets research funds. Personality, relatability, effusive sympathy for patients, should not be part of the equation for scientific merit. In a disease that is so starkly underfunded to begin with, scientific progress may be slowed or skewed without better coordination.

Little about ME has ever been “normal” in terms of scientific discovery, however. The government has placed ME in an inscrutable category. ME is neither a disease nor a public health issue. It’s what left when every other disease is ruled out, and the “what’s left” continues to be up for debate.

And as currently constituted, hope that NIH staff could construct an objective, effective grant program dispensing sums worthy of the disease seems unlikely. NIH staff have demonstrated their inability to make reasonable efforts to prevent or control or even understand the disease, exactly like the earlier generation of administrators and scientists who came before them.

Part of any major court ruling might require that the NIH be subject to the scientific equivalent of a receivership with all ME grant funding controlled by experts operating outside of the NIH universe. The disease needs to be taken out of the hands of the NIH, in other words because NIH’s function over the decades has been to suppress the discovery process.

The NIH’s failure to fund academic researchers is a singular disaster that should have been litigated in the courts long ago. This failure is historical, it’s out in the open, it’s shocking. The fact that the NIH, forty years after ME was recognized as a major problem, is still starving academic researchers of grant money is outrageous. The agency gets away with it because members of the public don’t understand the stakes; they see no risks to themselves, a benightedness actually created by the NIH and CDC.

Indications that NIH’s aversion to spending money on ME will change simply don’t exist and, in fact, never have. In response to this hard reality, many, myself included, have longed for Congressional intervention in the form of federal legislation that forces the government’s hand. In 1988, the prospects for resolution of ME seemed good when Congress began to appropriate, beginning that year, ever-expanding annual sums for ME research at the Centers for Disease Control. The Senate appropriations subcommittee for the Department of Health and Human Services deemed ME a public health problem and in effect demanded that CDC perform epidemiology and basic research to measure the public health burden and discover ways to control the spread.

Congress’ will to make these demands of the CDC seemed to evaporate by 1996 when Congress learned that CDC had defiantly squandered the money, however. A congressional impulse to resolve the disease by insisting CDC perform research, and earmarking ever-larger dollar amounts for the endeavor in the 1980s and into the 1990s, never seemed to recover.

Which is why ME patients might benefit from smart prosecutors pressing the case for them in a neutral setting like a courtroom. In that setting, prosecutors presumably would have a better chance to present the facts unmolested by scientific charlatans, disease constituencies who think they’re in competition, patient advocacy organizations trying to control the narrative, etc. There is a wide ecosystem of people and institutions with a vested interest in the fate of ME who do not count resolution of ME as their priority. In a trial setting, their claims could be objectively evaluated.

There is little need to bend over backwards to prove the government’s negligence. That negligence is a matter of public record. Here’s but one instance: Scientists in one division of the Centers for Disease Control lied to Congressional committees for years about their ME research, which in fact was nonexistent. For an entire decade beginning in 1988, the CDC stole more than $150 million awarded them by the US Congress to conduct basic research and epidemiology on ME to determine the breadth of the epidemic. I know because I reported that theft and the underhanded means by which the agency accomplished it in my book Osler’s Web. And although the scheme was orchestrated by a single division, knowledge of it, tacit approval of it, went at least as high as the deputy director of the agency, and likely the director.

Two years after Osler’s Web was published, the inspector general of the Department of Health and Human Services, and the General Accounting Office, then the investigative arm of the US Congress, confirmed my reporting. ME sufferers owe a debt to Neenyah Ostrom and her editor, New York Native publisher Charles Ortleb, who brought Osler’s Web to the attention of Rep. Jerrold Nadler shortly after its publication. The latter set in motion the groundswell for federal investigations at the time.

The NIH’s history in ME is hardly better. Indications seem clear at this point in 2024, forty years after the Incline Village epidemic, that the NIH intends to maintain the status quo as regards ME. In other words, funding for extramural research by academic scientists will continue to be near zero when compared to any other disease, and intramural research will not occur. ME will continue to languish in the Bermuda Triangle of maladies at in Bethesda.

NIH recently published a paper about ME, its first in thirty-five years. It took NIH ten years to complete this study of seventeen patients. In 2016, NIH advertised this study on the front page of the Washington Post as a major effort by the NIH, a study of forty patients and forty controls that would be fulsome with data. A decade later, when the study was published, it turned out the agency looked at seventeen patients, and twenty-five controls. Some of these patients turned out not to have ME. Even more lacked biological abnormalities that are recognized as typical, even diagnostic, of the disease. A few ME scientific experts I talked to in private thought the paper sucked. I don’t recall a single independent scientist—that is, a scientist not on staff at NIH— hailing the paper in any public forum as a step forward. The cost was reportedly $8 million, a sum any number of academic scientists would be thrilled to have at their disposal for serious research.

The NIH’s expert in infectious diseases of the brain, Avi Nath, was the principal investigator. Even Nath seemed underwhelmed by his own study in remarks made prior to the study appearing in press. A rumor circulated that medical journal editors were less than eager to publish an “underpowered” study of just seventeen patients. Nevertheless, Nath went on to publish an overwrought, threatening cri ‘d coeur when a few ME patients—out of a universe of millions of patients—slammed his study on Twitter. Snowflake Nath claimed their criticisms were so devastating that he and his colleagues might not want to study ME ever again. Nath’s screed was remarkably tone-deaf considering that NIH already had ignored this profoundly disabling disease for decades. NIH failed to perform any research on ME—basic or applied—in house, and prevented independent research by withholding grant money for years at at time.

It’s hard to imagine NIH scientists demanding thanks from cancer patients and their families for conducting research, or threatening to drop cancer research in the future if cancer patients or their families dared to criticize cancer research.

It seems Nath has been unable to forgive ME patients and is making good on his threat. Recently, he stated that going forward, NIH intends to focus on Long Covid at the expense of ME, given Long Covid symptoms are so much more serious.

That’s not the reason. And Long Covid symptoms are NOT more serious. The reason is that ME continues to be radioactive to scientists at NIH. They have afforded one another permission to do whatever they want about ME, whether mischaracterizing it or ignoring it. No one among them has ever been chastised for malpractice, or negligence, or lying to Congress, or slamming sufferers as deplorables in public forums without fear of rebuke. In 2024, NIH scientists continue to be unable to talk about the disease without gratuitously badmouthing patients as hopelessly creepy, perpetuating an appalling forty year tradition in both Bethesda and Atlanta.

As I wrote on May 6, 2024 in my column, The Power of ‘Sorry,’ the de rigueur putdowns of ME sufferers as if they are members of some lowly social caste, echoes of the character assassination launched in the 1980s by NIH’s Stephen Straus, share a quality akin to the generational compulsion of racism. (Excerpt below from my column The Power of Sorry:)

I’m not impressed that attitudes about ME sufferers have changed at NIH. In fact, increasingly the stigmatization feels to me as intractable as racism. There seems to be a need to dehumanize patients to make the abuse seem justifiable. It’s handed down through the generations, the rhetoric barely changing. (Avi) Nath himself is guilty of the need to corral ME victims into a corner with the language of contempt.

At a day-long homage to Ian Lipkin on April 3, for instance, where luminaries of the infectious disease world celebrated the career of the Columbia University virus hunter, Avi Nath joined a panel about ME. At one juncture, Nath praised the ability of Lipkin to inspire trust in “…even the population of ME/CFS—as difficult as they might be…”

If you don’t want to do science on a disease, then characterize those who suffer from it as intolerable people who are unworthy of consideration. That’s been the winning formula for decades at the US federal health agencies.

Patients suffering from ME need prosecutors to press their case, to explain to juries the magnitude and duration of the government’s negligence and its impact on individual sufferers, the economy and the culture. The fact that more than eighty percent of ME sufferers are women who have lost decades of productive life is another shocking statistic ripe for prosecution. Sex discrimination, gynocide, is so blatant in this nearly half-century drama, it could be characterized, pardon the tedious cliche, as the elephant in the room.

What are ME patients waiting for? They’ve already mailed thank you notes, signed petitions, and penned earnest, even pitiable letters to politicians. For decades, they have swarmed Capitol Hill on “lobby day.” They have left hundreds of pairs of empty shoes on the mall in Washington, DC. They have poured contributions into patient advocacy organizations—whose six-figure-salaried executives betray them at every turn. Patients have funded independent scientists in hopes of supporting research that resolves their suffering, but in reality the money required to resolve ME is now in the multi-billions of dollars.

The crimes of the federal health agencies that have occurred in the realm of ME are not remotely complicated. Anyone who has followed the history is by now aware of them. You don’t need to know anything about mitochondria or Epstein-Barr virus or cytokines or demyelination or cardiomyopathy or RNA to make sense of what has occurred and promises to occur in the future if the status quo remains undisrupted.

This has never been about science.

Ostrom’s question is important. It’s been evident since the 1980s that, among patients who have no spousal or familial support, poverty reigns. And yet, there is a lot philanthropic money available within the ME community, too. Hedge fund managers, or their family members, acquire ME. Simply being rich hardly buys protection from a disease with an unknown route, or routes, of spread and no clear risk factors aside from gender. Further, individual patients have demonstrated they are happy to participate in crowdfunding efforts to raise hundreds of thousands to support bloggers and even neophyte filmmakers in matters of days or weeks. There have always been plenty of flimflam men in world of ME.

Given the specter of a desperately bleak future at these agencies that have colluded to bury ME, class action lawsuits and individual lawsuits may be the last and best hope for progress. Everything else has been tried.

Copyright 2024 Hillary Johnson. All Rights Reserved.