Francis Collins and the Zombie Apocalypse, Part Two
“When will the NIH issue a formal apology to ME sufferers?” I asked a journalist standing nearby after Collin’s stopped speaking and left the auditorium.
“Didn’t you hear him? He did apologize,” she responded.
I couldn’t believe I had missed it. I studied a transcript of Collins’ speech later. What Collins said was, “I know we have in this particular community at NIH often not seemed to be as responsive as you would like, and I regret that.”
I regret that?
The deaths, the suicides, the mocking destruction of scientists who tried to help--all of it--it was regrettable?
That’s not the apology of which I dream. And given the ways Collins subtly suggested in his speech that NIH would own the disease from here on out, I don’t see my fantasy apology coming from Collins or anyone else at the NIH. People who fell ill in the 1980's and 1990's seem to have fallen into the category of collateral damage in NIH-land: they've been reduced to innocents who were messing up the narrative in nation's the War on AIDS. As a result, they had to be sacrificed on the deadly escarpment of the Newsweek headline "Yuppie Flu." The collective memory of a fast-spreading outbreak during those decades is receding fast. Some significant portion of those alive today who are ill with ME are far too young to remember there was a time when virtually no one had ever heard of ME. They don't like the word "epidemic" and all that it implies, including the likelihood of sexual transmission or even more casual transmission. Given the stultifying effect on their sex lives, it's hard to blame them.
When I think about apologies, I think about a 1977 ceremony at the White House, during which President Bill Clinton apologized to the last remaining survivors of the Tuskegee syphilis experiment on behalf of CDC. In that case, Clinton acknowledged that even after a cure was available for syphilis, CDC scientists continued to study the natural history of the disease in black men and women for decades without offering them that cure.
ME is a different kind of crime, of course. The government has withheld for thirty years an excellent drug therapy for many: Ampligen. It restores what patients miss the most--their intellects. But there is so much else to apologize for.
Collins has had at least the past decade of his directorship to figure out that ME is a public health crisis. He has had years to recognize the dire problems with the funding mechanisms for ME at his agency, including both the long-time systemic refusal to fund grants and the numerous problems associated with the lack of a standing review committee for ME grants. The entire ME funding disaster, from near-zero funding for decades to grant reviewers who either know nothing about the disease or, today, are competing with one another for funds—really—how can a thinking person not see these problems?
A possibility exists that Collins—or those who tell him what’s important and what isn’t—has seen these problems but made a calculation that pressure from citizens and Congress alike was unlikely to arise under his rule at NIH and, in his view, there were more important diseases and projects to fund.
Collins entered the Mazur Auditorium at NIH, a cavernous space inside the enormous Clinical Building, a.k.a. Building Ten, around 10 a.m. He spoke with fervor. I’ve lost count of the number of times I’ve heard NIH and DHHS officials speak about ME with similar enthusiasm and make the same promises. In 1992, for instance, the new Assistant Secretary of Health, a San Francisco doctor named Philip Lee, addressed a medical conference and let everyone know that he had a friend with ME and from here on out, the world was going to change in his department. This disease was going to take front and center stage. The audience was rapt; they stood for him when he was done talking. Absolutely nothing changed.
A few people stood for Collins, too, when he finished, but the applause felt thin, as if people were thinking, What just happened? Collins seemed to evaporate afterward—the only speaker who did not make room for questions.
During his speech he noted that he had been excited after XMRV was associated with ME. (Recall, the NIH held a conference on that finding in 2010. Collins spent a few hours at that one, which people interpreted as a sign of interest.)
“I was involved in a significant way ten years ago [when it appeared] XMRV might in fact be the pathogen. It was intensely disappointing when that hypothesis fell apart,” Collins said.
Agreed. But shouldn't the takeaway have been: let’s not abandon ME yet again because one hypothesis has been shot down? Indeed, while XMRV was still viable, the NIH re-purposed AIDS labs and redirected AIDS scientists to focus exclusively on XMRV. Instead of folding their tents and going back to searching for the elusive AIDS vaccine, Collins should have motivated his staff to keep going to find the true identity of the ME pathogen. After all, this was the second time a retrovirus had been implicated.
When XMRV proved to be a contaminant, NIH regressed to its original policy, however. If someone else, working on a shoestring, possibly funded by patients, found something interesting, NIH would be happy to step in and take credit, or so I was told without irony by Fauci's deputy during an interview in 1993.
Collins added that the XMRV disappointment had “…left us with no understanding.”
What a shame—but there's a hack for that. How about taking a few hours to read some of the thousands of papers in the medical literature to acquire a modicum of understanding? Surely the director of the NIH could ask some immunologist at his agency to find him the best, say, ten papers on ME immunology to get up to speed.
And here it may be time to reflect on the overarching arrogance of the NIH. Its scientists feel themselves to be at the pinnacle of American, if not world-wide science. No matter who discovers the cause of ME, I’m guessing NIH will lay claim to the discovery if there is any way to do it. Notice how eager Collins was to point out that Stanford University scientist Ron Davis’ nanoneedle technology to identify ME blood from controls was a funded by the NIH? In that case, Collins made an error—to err is human. His impulse is telling.
At any rate, with “no understanding” and no interest from Collins or anyone else at NIH for the next five years, ME continued to lie fallow in Bethesda, unfunded and ignored per usual, while who knows how many more women, men and children acquired the disease. Whitney Dafoe and Ryan Prior come to mind. How many died? Hard to say. Tom Hennessey killed himself during those years that Collins ignored the disease. We’ve all lost friends and people we’ve simply admired from afar even if we didn’t know them personally. Naomi Weisstein, who died in 2015, comes to mind.
Continuing with his chronology of negligence, or milestones, depending on your point of view, Collins went on to say that his interest had once more been piqued by the Institute of Medicine’s report of 2015. The report was titled, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. The disease was “legitimate,” the authors wrote. ME was also grossly underfunded, under-recognized and underestimated.
To her credit and with the authority of a government-sponsored report under her wings, Carol Head of Solve ME/CFS called a press conference in Washington under NIH’s nose and said the ME disaster was “…a tragedy unworthy of the American people.” She took the actress Morgan Fairchild, another ME sufferer, to see Anthony Fauci to ask that National Institutes of Allergy and Infectious Diseases make itself a home for ME, thus removing it from the Office of Women’s Research and Health. I expected, and later learned, that Fauci’s answer was “No.”
"We have done what we can..."
No matter how you cut it, the IOM report was bad publicity for both the NIH and the CDC. Were its conclusions the sparks that ignited Collins’ new interest?
He claimed so.
“Responding to [the IOM report] in October of 2013 (sic), we pulled together an NIH trans-working group to identify the most effective path we might take.”
Although the NIH trans-working group had existed since 1999, its members had been reconfigured by 2015 to include NIH experts on drug and alcohol abuse, mental health, alternative medicine and that long-time NIH fave, dentistry. By NIH logic, you just can’t have too many dentists involved in ME research.
“[The IOM report] allowed us to ratchet up our funding” Collins continued, adding with an ironic smile as if it were an old but evergreen joke, “Not enough, I agree.”
But--does he really agree? Had I the chance I would have asked, “Why do you not ratchet up funding, given that you are the director of the NIH? Who or what exactly is preventing you from doing so?”
Collins didn't even bother to offer an excuse for “not enough” funding. In fact, he said, “We have done what we can in terms of the resources both intramural and extramural funding.”
The mystery deepens, given his agency has a record breaking $39 billion to play with in 2019 and Congress seems happy to give the agency any amount.
Is it that Collins can’t find the ideal number of lesser bureaucrats within NIH who “believe” in ME to justify spending more? Does he need a quorum among his colleagues? Anyone seeking answers to questions regarding the NIH’s internal axis of power and spending rationales—or anything else the NIH doesn’t want journalists or the public to know—will be met with Kreminlesque secrecy. It looks like we’re heading into FOIA territory for answers, always a tedious process and rarely satisfying.
“What you do is more important than anything we do in America”
If you need proof of the awe with which members of Congress regard NIH bureaucrats and are willing to please them, I offer up this C-span clip.
Boring though it may seem to the non-cognoscenti, it offers proof to the ME community of how easy it would be for Collins to pour as much cash into ME as he (or we) would like, assuming he is actually in charge of the NIH. If you can, try to make it through the first few minutes in which Senators on the subcommittee who shovel money in the direction of the NIH appear to be gobsmacked by the mere appearance of NIH administrators in their hearing chamber. You will see how much money Collins has at his fingertips.
The Trump administration called for a 13% reduction in the 2020 budget for NIH, but subcommittee members assured Collins they would not only ignore Trump's request, they would bump up their funding.
“What you do is more important than anything we do in America,” senate subcommittee member Richard Shelby told the lineup of NIH officials, including a perpetually nodding Francis Collins, who tipped his head after each hyperbolic compliment until he looked like a bobble-head figurine. An expressionless Anthony Fauci was present, too. Collins cheerfully estimated it was Fauci’s 400th time sitting before a senate appropriations subcommittee. No wonder Fauci looked suspiciously like a cardboard cutout—or a small, overly Botoxed man on Xanax.
“This is always a good hearing for us,” Blunt continued. “In four years, we’ve clearly made (NIH) one of our priorities. We’ve increased funding by nine billion dollars, a thirty percent increase over four years and hopefully we’re not done with that process yet…
“I’m disappointed that (the administration’s) 2020 budget request would cut agency by thirteen percent. I’m sure the committee here today will not do that,” he added.
“NIH is the largest funder of basic research in the world,” Senator Patty Murray, ranking republican, said by way of follow-up. “And we’re very proud we’ve been able to increase its budget.
“We’re not going to cut your budget,” she added.
Like an admirer nearly a loss for words she said, “…Sitting here at the table, all of you distinguished in your fields—we’re lucky to have you…Trump’s budget is wildly out of step and we will reject it.”
So much for Collin's inability to fund ME adequately. When he began discussing science at the NIH conference, things deteriorated further. He revealed himself to be in the “splitters” camp (versus “lumpers”) espousing his belief that if progress is to be made, we must accept the theology that ME is not one disease but many diseases or “subsets” and every subset will have a different cause--and cure.
“Centers are finding a lot of interesting findings,” Collins said, “probably also underlying that there are different kinds of ME-CFS. We need to understand the subsets that have different kinds of pathogeneses and therefore be susceptible for different interventions…we need to understand a large number of people may have different causes.”
Fifty years from now, should medical historians revisit the current popularity of this theory, I suspect they will be incredulous. Hundreds of years ago Italians believed influenza pandemics were the result of the stars’ alignments in the night sky; Russian villagers believed that hitching two widows to a plow and forcing them to walk in circles all night would ward off outbreaks of disease. Add to these ideas the one about subsets.
This multi-cause, multi-disease theory is precisely the irrational and hopeless view of ME that helps keep it unresolved. To quote Robert Gallo quoting Lives of a Cell author Lewis Thomas, “Multi-factorial is multi-ignorance.” Scientists have shown again and again there are no subsets, although there may be genetic and certainly gender disparities among victims of ME that result in varying degrees of severity—a phenomenon that could potentially look to the uneducated eye like different diseases.
When Stanford University ME expert Jose Montoya talks about “clinical phenotypes,” as he did at this conference, he does not mean multiple diseases, he means the “presentation of a disease in a given individual,” as per Wikipedia. Every person with every disease will have their own “clinical phenotype,” but that doesn’t mean they don’t have tuberculosis or sarcoidosis or inflammatory breast cancer or whatever their diagnosis happens to be.
Maureen Hanson, who heads up the Cornell University Center for Enervating Neuroimmune Disease, has shown as part of her research that subsets do not exist. She is either not being heard or some of her colleagues find the multi-disease, multi-cause theory simply too attractive to abandon in the face of scientific evidence it is wrong.
Dr. Paul Cheney has seen thousands of patients. He notes, as everyone has, that gender appears to be one influencer of susceptibility. Being female is a profound risk factor, probably the most important among adults. But he has also told me that women are not only more susceptible, they typically are more seriously ill and less likely to spontaneously recover than men, for instance. Those differences are clinical phenotype differences. They all have ME.
Subtle genetic factors intrinsic to individuals may be another phenotype influencer, true in all diseases. But ME is not a heritable disease passed in the germline DNA, unless it turns out that a virus causing it is passed this way.
What is driving Collins’ certainty that ME is not one but many diseases, each requiring a different treatment? A lot of newbie doctors and scientists are postulating a kind of nihilistic re-imagining of ME, believing it to be lots of different diseases with a multitude of causes or "triggers," and positing theses ideas as if they are progress. Consider the political advantage that accrues to NIH and CDC if theses ideas are taken seriously. One could justify not spending money on something as hydra-headed and confusing as this version of ME until the cows come home. Fauci, or his successor-- should any of us live that long--will be able to say not enough is known to use money in a smart way, so let's all wait. If Francis Collins actually believes this prattle it’s yet another reason NIH will be little more than a follower, not a leader, in ME, as it has always been in the past.
* For those who may have missed them, I am re-posting two articles I wrote about Francis Collins in early 2017, a period during which his continued leadership at the NIH was in question. My reporting explored his support among right-wing Republican senators who persuaded Trump to reappoint him, as well as his religious foundation, Biologos, one outcome of his born-again revelations in medical school. (They appear on the Research + Media page; please scroll down). The first is titled, "NIH Director Francis Collins, A Trump Fave or a Placeholder? And does it Matter?" (Part One). The second is titled, "Francis Collins: Should ME Sufferers Care Whether He Leads the NIH?" (Part Two).