Francis Collins and the Zombie Apocalypse, Part One
Much has already been written about the NIH conference in Bethesda, MD on April 4th and 5th, the one called Accelerating Research on ME/CFS.
I would like to offer a few observations about the conference, my focus being the “Francis Collins phenomenon.” As much as Collins is an individual who—in theory—directs the agency, he also more generally represents an enduring mindset at NIH, thus blending into a fraternal cell of NIH staff before him who have dithered and, in Collins’ case, perhaps played too much guitar, while a large swath of the US population has become disabled. All of this and more became clear during a nine-minute rapid-fire speech Collins delivered on the second and last morning of the conference, after which he disappeared and was never seen again.
Part of the Collins phenomenon is the heartbreaking realization that under his direction NIH policy toward ME continues much as it has since the 1980s. This is true in spite of a few relatively recent efforts by NIH at patient "outreach" and the establishment of three research centers plus a data coordinating center in September 2017. Lest it be forgotten, ten groups applied for center status, meaning seven groups who wanted to study ME were turned down. And the NIH has pretended since the early 1990s it doesn’t get enough grant applications for ME, a falsehood, particularly in the 1990s. The NIH expenditure for the 2017 centers? Although initially advertised as $15 million by Collins, the actual figure was $7 million for one year for all four entities, according to Solve ME/CFS.
A year later, 2018, the money awarded by NIH for all ME/CFS activity, not just the centers, dropped by 17 percent, to $11.6 million. Part of that sum, $600,000, was awarded to New York state psychologist Fred Friedberg for a two-year home-based study involving actigraphs, pedometers, activity diaries and such. The grant came from the NIH’s National Institute of Nursing Research (NINR). Friedberg is a member of the Department of Psychiatry at SUNY, the state university at Stony Brook. If his inquiry suggests patients can profitably pace themselves by wearing monitoring equipment, the scheme will be marketed to insurance companies. No cures or therapies mind you, but your insurance will pay for your fitbit even if no one has a clue why you’re incapacitated in the first place. Thus far, Friedberg has been awarded a total of $1.6 million in NIH money. I wish I could report that his investigations have resulted in hard evidence of improvement in the ME population. Instead, the money paid to Friedberg simply reinforces my sense that some body of geniuses at the NIH really hopes ME is a behavioral disease that can be managed with behavioral modifications.
I guess the US government is fine with some significant portion of its citizenry unable to function--“zombified,” as one patient put it recently. If the US still had a biological defense research program (presumably ended in 1973 under Richard Nixon), it might make sense to transfer all ME research there because if any agent could destroy a population's ability to function without a shot fired, it's whatever causes ME.
Implicit in Collins’ convivial speech was the fact that the leadership at NIH continues its refusal to recognize ME as a public health crisis--an emergency--and worthy of the same attention that was paid to AIDS thirty-five years ago. The US government has poured hundreds of billions into AIDS for a period of decades with the happy result that there exists over thirty FDA-approved drugs to render HIV undetectable. Anyone who knows anything about ME would a thousand times rather have AIDS these days.
The latter disease has received so many billions of dollars over the years, in fact, that an AIDS-Industrial Complex has arisen with seemingly unstoppable if nonsensical momentum. No one in authority seems to have the will to slow down the spigot, in some part because so many labs and scientists’ life-long careers are dependent upon AIDS money.
In 2018, AIDS domestic spending was approximately $28 billion, with $7 billion going to the NIH, CDC and Veterans administration for biomedical research. NIH expenditures on ME were one percent of that figure.
NIH budget estimates are that $15 million will be devoted to ME this year, a re-play of the itty-bitty sum NIH spent on ME in 2017, when three research centers were created.
Given these numbers, are PWME supposed to believe Collins or anyone else at NIH considers ME anything more than a nuisance, in spite of their public expressions of interest?
Further, maybe this is the place to say that the $150-$250 million per year a few have proposed is “commensurate” with ME’s “disease burden” seems a highly conservative number because it is so out of step with what the NIH spends on other serious outbreaks. Are PWME really so beaten down by all the years of being treated like people who never mattered that they will accept this sum as adequate? The unequivocal answer is Yes. Most who follow these events would fall over in a dead faint were this to happen. In truth, the argument over whether $200 million or so a year is sufficient is sadly moot given the fact that the NIH chooses to seems hidebound in its intent to spend $15 million or less per year on a disease that has spread to perhaps as many or more than four million people.
It seems wrong-headed to compare ME to other diseases that are relatively stable in terms of case production, like lupus or MS, which is what the folks who came up with those numbers did. ME does not appear to be stable—it has acted exactly as an infectious disease would act, exploding from near-zero cases in 1980 to as many as four million cases or more in 2019 and seventeen to twenty-four million worldwide. Even when it was extremely rare, it occurred in outbreaks that investigators immediately recognized as microbe-driven and infectious even if they didn't know the microbe. In addition, the immunology of the disease practically screams infection. That was true from day one and it’s even more true today as more is learned.
NIH and the CDC generally do not sit on their hands when an infectious agent causing serious disease is moving through the US population as they have done with ME since patients and their doctors brought it to the government’s attention in the early-1980s and possibly before. They will spend serious money--billions, not millions.
A case in point is the emergence of Accute Flaccid Myelitis, or AFM. It’s my understanding that Avindra Nath’s time and attention has been focused on this rare neurological disease occurring mostly in children. Nath is an expert on brain infections. He is also the principal investigator on the NIH’s intramural ME study. Nath and his superiors seem to feel there is all the time in the world—reaching to infinity—to do that study. They’re pursuing it with the urgency of butterfly fanciers in their golden years. The study is nearing the end its third year, for instance, and Nath et. al. have yet to locate forty cases, their original goal. Brian Walitt, a doctor in the National Institutes of Nursing Research, spoke at the conference in place of Avindra Nath, who for undisclosed reasons did not attend the two-day event. Walitt publicly appealed to PWME in the audience for more subjects.
The nation’s AFM case load is de minimis compared to ME—thirty-eight cases of AFM occurred between January and August in 2018, for example. Further, no one is arguing that AFM is inherited, stress-induced, the result of exposure to literally any well-known infectious agent, toxic chemicals, mold or any of combination thereof. In contrast, CDC documents state that AFM is caused by a virus.
In fact, six months ago NINDS and NIAID began advertising for grant applications to study every possible aspect of AFM. All hands on deck; dollar limits weren't even mentioned.
Another aspect of the Collins phenomenon is just as familiar as policy stagnation: dissonance between words and actions, in this case, dissonance between Collins’ genial public face and his decisions and calculations behind closed doors. In his conference speech, he voiced excitement over the science that had been presented (though he was not present to hear it) and expressed the impact on him of emails he received from patients and his personal commitment to the disease. Forget that he's expressed his personal commitment many times before. What is anyone to think about his personal commitment when he spends nine minutes at a scientific conference on ME at his own institution, all nine of which he is the only one speaking, and then leaves the room? His proclaimed personal commitment struck me as little more than a PR exercise.
Who actually advises Collins about ME? From where does his information about the disease come? Does anyone at NIH really know very much about ME?
Since 1986 I have heard gossip from NIH insiders that the real NIH director is Tony Fauci. He’s been a fixture at NIH since Reagan’s first term, close to half a century. By virtue of the multi-billions he has been able to persuade congressional appropriation subcommittees to contribute for AIDS research in his post as director of the National Institutes of Allergy and Infectious Diseases (NIAID), his dominance is such that by repute he is to Francis Collins as Dick Cheney was to George W. Bush.
If true, that’s seriously bad news. Certainly, Fauci has been ME’s enemy-in-chief since the death of his good friend Stephen Straus in 2007 and for years before that. Fauci provided Straus and his ridiculous theories about ME cover from public scrutiny, beginning with Fauci’s demand that Congressman John Porter tell his constituents to stop writing letters demanding Straus’ firing in the early 1990s, to Fauci’s decision to put ME in the Office of Women’s Health Research after Straus died. If you want to bury a disease for all eternity, put it there. Fauci even turned down an offer of money to conduct research on ME from a House appropriation subcommittee in 1992. So little was known about ME, he told the legislators, he would be unable to put any money to good use. In fact, Fauci took the opportunity to introduce the bromide that NIH has used to justify years of negligence when he responded, "The pool of experienced investigators...remains small...[A]s the number of investigators increases the availability of resources will become more important."
Well, we've certainly never heard THAT before!
The predictably awestruck subcommittee bought the lie twenty-seven years ago. Fauci put the topic to bed where, if Collin's performance at the Accelerating Research conference is any indication, ME just may enjoy the 100-year sleep of Sleeping Beauty. Fauci seems to have magical powers. Afterward, he sallied forth into his bubbly limousine-and celebrity-filled world for the next three decades while people with ME remained cemented into their beds, cursing the universe, possibly never knowing specific individuals with names and faces could be blamed for their lost years.
Regardless, whether he’s under Fauci’s—or anyone else’s thumb—Collins is not moving the ball forward, even if he claims to be doing just that.
Going by his Twitter feed alone, Collins’ function at NIH appears to be primarily fundraiser and public relations specialist, someone working hard to make NIH seem like a caring, touchy-feely place run by a guitar-strumming Ichabod Crane. Obviously, a Twitter profile cannot be the true measure of a person. Yet, it’s clear Collins seeks to create a personality cult around himself using his guitar. The message: he might be a famous geneticist and in control of a record-breaking $39 billion budget this year, but he’s also a folksy guy with a green guitar pick on his lapel with “hope” written on it in white letters.
As part of his remarks at the NIH’s Accelerating Research conference, he alluded to the guitar pick lapel pin and noted, “It’s not the NIH—it’s the National Institutes of Hope.” I half-expected him to strap on his guitar at that juncture and lead the audience in a round of Kumbayah My Lord. Indeed, I'm sorry to report, he actually did quote bible scripture at the end of his remarks.
Do people with ME really want to hear bible scripture from the director of the NIH at a scientific conference? Aren't they looking instead for some definitive comments about future research plans and commitments of large sums of money going forward?
The fact is, he talks to PWME as if they are toothless idiots. Collins encouraged patients, who by day two were already on their last legs, to consider themselves part of the “NIH family.” Talk about a tin ear. After several decades, doesn’t he know thousands of victims of ME are dead? Or that they’re killing themselves at some undetermined but startling percentage point above the rest of the civilian population? Or that children are being raised by the severely disabled and that people in any family where an ME patient resides has a near-30% risk of falling ill, too? And that almost no one is receiving even palliative medical care?
Such an extravagant, historic tragedy unfolding under his patrician nose and Papa Collins wants everyone to feel they are part of a loving NIH family. Wow, that is one super-dysfunctional family I don't want to be part of! I would like to know where Mom is in this family. I see only Dads. Collins, Fauci, Nath, Koroshetz, Walitt and more, living (and dead), faking interest or expertise in--or ignoring--a disease whose victims are disproportionately women. Collin's NIH family is the nightmare version of the family most people with ME know all too well without ever leaving home.
For those who are part of this zombie apocalypse, who’ve lost irreplaceable decades of their lives to ME, Collins’ Twitter photo of himself jamming with a Nobel Laureate scientist and harp "virtuoso," playing the tunes of another Nobel Laureate, Bob Dylan, lands on the eyeball in a way Collins surely never intended. Dylan’s Masters of War came to my mind:
"Let me ask you one question
Is your money that good?
Will it buy you forgiveness
Do you think that it could?"
The NIH director can’t seem to help himself. Scroll up his Twitter feed and you’ll find him accompanying opera topliner Renee Fleming to Leonard Cohen’s Hallelujah, singing harmony and plucking his guitar with a finesse equivalent to that of certain fondly remembered high school friends. It’s a love song, not a religious song, by the way, but you would never know it by the transported expression on Collins’face.
Collins seems to have no comprehension that the rich, prestigious agency he directs could and should spend billions to solve this devastating disease, and right now. He seems not to realize that it’s a malady that could afflict his wife or his children. Or that his agency has impeded the resolution of ME by driving scientists away from research. And in that sense NIH shares equal responsibility with the CDC for the suffering of patients, their families and the great, unmeasured hole ME has torn in the fabric of this country’s economic and civic life.