Update April 7, 2021: Further comment from Dr. Vicky Whittemore added to the end of this post.
Last week, an old story was recounted to a new audience. During the March 30, 2021 NIH telebriefing with the ME/CFS community, Dr. Vicky Whittemore said that there had been death threats against grant reviewers in the past, and that this was one reason why NIH is now withholding the names of reviewers on the ME/CFS Special Emphasis Panel (referred to as the “SEP”). This is not the first time that NIH has used the story of death threats to justify withholding the grant review rosters from the public. This excuse is overblown, and every repetition of it harms the ME/CFS community by perpetuating derogatory stereotypes of advocates and people with the disease.
I can say that the death threat story is exaggerated because I have documentation of what actually happened. I began investigating who serves on the ME/CFS SEP in 2012. Grant review panels are federal advisory committees, and the law requires that the membership of the committees be disclosed to the public. Despite this requirement, Don Luckett at the Center for Scientific Review told me in 2012 that they no longer posted the rosters online “due to threats some previous panel reviewers have received.” At his suggestion, I filed a FOIA request for the rosters, and I also requested evidence of the threats. NIH initially refused to release the information, but I appealed and in 2014 I won. NIH released the rosters to me, along with the evidence of the threats cited by Mr. Luckett.
Despite Luckett’s use of the plurals “threats” and “reviewers,” the documents show that there was only one isolated incident. Dr. Myra McClure, a retrovirologist from Imperial College London, was scheduled to serve on the SEP on February 22, 2011. On February 5th, she wrote to the Panel’s Scientific Review Officer:
You will by now be aware of the campaign building up on websites to have me removed from the Committee reviewing CFS grants. I have been subjected to a couple of nasty calls from the US yesterday. One was from a journalist, Robert Serrano who has been researching the CFS/XMRV issue for his local paper, News Sun, distributed in the Wisconsin/Illinois region. He phoned to warn me that he had found out that “some of the extremists are obtaining guns with a view to marching to NIH and CDC to look for me and others like me who might stop CFS funding.”
Dr. McClure did not express fear or alarm in her email. Instead, she referred to the call as “bullying/intimidation,” and withdrew from the Committee because, “I am too busy to put up with nonesense [sic] like this.”
Two days later, Mr. Luckett forwarded McClure’s email to a colleague with the following summary:
A group of chronic fatigue syndrome activists have objected to a scientist we appointed to a review panel and she has received a number of disturbing calls which has forced her to resign from the panel. This reviewer, Dr. Myra McClure, said that a reporter from the News Sun in Wisconsin/Illinois called to warn her that extremists were obtaining guns with the intent of using them against NIH, CDS [sic], and others. See below. (I called the News Sun and they said that had [sic] no reporter by the name given.).
The SEP meeting was subsequently canceled. A new panel was recruited and the meeting was held without incident on March 24, 2011.
To be clear, NIH decided to withhold the names of grant reviewers from the public despite the legal requirement that the names be disclosed. Federal advisory committees do their work in public, and committee members know that their names and contact information will be disclosed to the public. Nevertheless, NIH withheld the names for years, thereby shrouding the operation of the SEP in secrecy and preventing the public from assessing who was reviewing ME/CFS grants.
I can imagine a situation where death threats could be so specific, targeted and frequent that it may warrant special precautions of some kind. But that is not the case here at all. The sum total of evidence of “threats against reviewers” amounts to a single phone call in 2011 to a single reviewer, relaying a story of “extremists” with guns who were supposedly going to march on NIH and CDC at an unspecified date and time. As unpleasant and annoying as the call was to Dr. McClure, the statements do not appear to meet the criminal definition of a death threat. Her description of it as bullying and intimidation is much more accurate. And that’s all there is. There were no other threats; there are no extremists. It goes without saying that no one obtained guns and marched on NIH or CDC. Yet ten years later, NIH is still citing this incident as justification for withholding information from the public.
It’s easy to trace how the story of that single phone call to Dr. McClure was repeated and magnified over time. After I made my initial inquiry about the SEP rosters in July 2012, there was email correspondence among several people at NIH’s Center for Scientific Review. Included in a batch of material “relevant to why we’d prefer the ME/CFS rosters not be made public” was an August 2011 article from The Guardian relating stories from researchers in the UK about hate mail, crank calls, and at least one disturbing personal interaction. The article uses words like “extremists,” “militants,” and “dangerous,” but includes no evidence of any coordinated group or campaign. McClure’s withdrawal from the SEP is referenced in that article, but now it is described as “she had to withdraw from a US collaboration because she was warned she might be shot.” That is quite a bit more specific and disturbing than the way she described the phone call immediately after it happened.
Fast forward ten years to the ME/CFS telebriefing last week: Dr. Whittemore referred to the death threat story while delivering her update on grant review. She was discussing why NIH is not publishing the ME/CFS Special Emphasis Panel rosters, and she said:
[T]he NIH policy has always been that members of the special emphasis panels are–that the names are listed in aggregate for all of the special emphasis panels. And it’s my understanding that actually before I joined NIH in 2011, that there were death threats made to some of the reviewers. And then that’s in large part why, um, that plus many of the special emphasis panels review very small numbers of grants, that it would be very obvious to investigators who reviewed their grants and NIH peer review policy is to keep the review anonymous. So those, for those reasons, the actual identity of the reviewers is not released for each individual special emphasis panel, but is released in aggregate.
Dr. Whittemore, like Mr. Luckett in 2012, said “threats” and “reviewers,” when the documents show there was only one isolated incident. And once again, NIH is saying those “threats” justify withholding SEP meeting rosters.
I reached out to Dr. Whittemore for comment, and asked for details about the threats she mentioned. She replied,
I learned about the death threats from someone at CSR who is no longer at NIH. I was never told any specifics about how many or to whom the threats were made, or who made the threats, so I am unable to answer your questions below. My understanding is that it was more the effort to maintain confidentiality of reviewers that led to the aggregate rosters for the Special Emphasis Panels.
Dr. Whittemore made her comments last week based on a story she heard from someone else at NIH, a story which she says contained no specifics. This makes me wonder how often this story gets repeated at NIH, and how much it informs the way NIH sees people with ME. The story is still being told, and is being used as an excuse to withhold information from the public. That certainly suggests that NIH believes some ME/CFS advocates could be dangerous–otherwise, why would a story from ten years ago be so significant.
I spoke with several advocates, all of whom said that Dr. Whittemore’s repetition of the death threat story is harmful. Sharon Shaw told me the comment, “portrayed the ME/CFS community as dangerous and unstable. . . Comments like this vilify the ME/CFS community, and further stigmatize and disparage people living with ME/CFS.”
Advocate Kellyann Wargo told me:
NIH, stating that they have received death threats in regards to ME, sends a smoke signal to researchers that they should think twice about getting involved in ME research, a field that is already lacking funding and researchers. It reinforces the stigma and marginalization of ME to the general public. Once that stigma is broadcast, it is difficult to extinguish. NIH is punishing the ME community because of a rogue agitator. They are saying to advocates “why should we fund anything to do with ME if an instigator is sending NIH death threats?”
That idea was echoed by Denise Lopez-Majano, who said, “How can we trust NIH has our best interests at heart if they say things like this? If NIH is perpetuating this belief among themselves, how can they expect to encourage new researchers to enter the field?”
I asked Dr. Whittemore how she would respond to the concern that her comments could perpetuate the myth that people with ME/CFS are unstable and/or dangerous. She replied, “I am sorry that my comments may be harmful to individual [sic] with ME/CFS. This was not my intent.”
The death threat story has taken on a life of its own. One crank call to one reviewer in February 2011 became “threats to reviewers” that NIH still believes is sufficient justification to withhold the rosters of ME/CFS SEP meetings. NIH continued to use that justification for two years after I won my FOIA appeal. The story was repeated within NIH over the course of ten years, including to Dr. Whittemore. She then went on to repeat the story to the ME/CFS community as part of the reason why NIH once again decided to withhold the membership rosters of the ME/CFS review panels.
The repetition of this story by a leading member of the Trans-NIH ME/CFS Working Group does real harm. Dr. Whittemore’s comments lent gravitas to the stereotype that people with ME are mentally ill and dangerous, and makes it sound like there is still a threat to be concerned about. Dr. Whittemore presented the story as established fact–despite the fact that this single phone call occurred ten years ago; despite the fact that there is no evidence of “extremists,” “militants,” or any violent intentions among ME advocates; and despite the fact that she herself has no specifics about what occurred and when.
In light of the full picture, it appears to me that there is a persistent prejudicial view of ME advocates at NIH. Furthermore, it is obvious that NIH should not continue to recycle this story for any reason, including as a justification for preventing the ME community from evaluating who reviews ME/CFS grant applications.
Update April 7, 2021: Dr. Vicky Whittemore provided additional comment:
Dear Jennie,
I am truly sorry for the hurt and harm I have caused the ME/CFS community by raising the issue of death threats in my comments during the NIH telebriefing. Since the telebriefing, I have heard from several individuals with ME/CFS who have expressed to me how hurtful my comments were. That was certainly not my intent and I sincerely apologize for making those remarks. I was wrong to have said those things.
NIH works to maintain the confidentiality of peer review of grant applications reviewed in all standing study sections, and in the Special Emphasis Panels that often review very small numbers of applications. The main driving factor for the aggregate listing of members of the SEPs is to keep the identity of the reviewers confidential.
For everyone’s information, the reviewers who participated in the most recent ME/CFS SEP were posted: https://public.era.nih.gov/pubroster/preRosIndex.era?CID=101323&AGENDA=409493
I would appreciate it if you would post this apology to the community.
Sincerely, Vicky
Pandemic Low
I hit a new pandemic low last week. CDC Director Walensky’s comments about the “encouraging” news that most vaccinated people dying of COVID had multiple comorbidities was the catalyst (see my op ed in the Philadelphia Inquirer), but my despair has been deepening for some time.
Hospitals are breaking. Schools can’t function. Services and business are disrupted. There are shortages in stores again. People we know are getting sick. COVID is blazing through, spreading more wildly than ever before. In many ways, this looks like the worst case scenario that we were all so frightened of in March 2020.
Except most people aren’t scared anymore. Everyone seems to be shrugging their shoulders and giving up hope that we can control this pandemic. “We’ll all get it,” they say, and risk death and disability with casual disregard for the consequences. Our callous treatment of the healthcare workers who must still nurse us through those consequences is appalling. Vaccines are keeping many people out of the hospital and alive, but there’s no comfort in saying that a disaster could be worse.
One of the root causes of our current situation is the individualizing of the pandemic. Mask wearing, social distancing, vaccination–there are no mandates for the general population anymore, just under certain circumstances. We have relegated public health measures to individual choice, opening the door to misinformation and conspiracy theories, and silently giving people permission to be selfish or myopic in making those choices.
The belief that vaccinated people would be fine drove the early end of CDC’s masking recommendations last May. Not only was this overconfidence, but it placed emphasis on the individual’s choice to vaccinate over and above masking’s role in reducing the spread of infection. Policymakers lost sight of the benefit of layering protection. By making it about individual choice, we set aside collective and community-level thinking.
You might think your vaccination or mask choice is just about you and your family, but it’s not. It’s about every single person you come into contact with every single day. If you are infected (which is possible even if you are vaccinated) then you could be passing the infection to anyone in your path (although wearing a mask would lower that risk). Other people could be vaccinated and masked and still catch the virus from you, particularly if you are not taking steps to prevent passing it along.
How many of the people you come into contact with are vulnerable or high risk in some way? You can’t look at a person and know if they have diabetes or cancer or autoimmune disease. Your coworker might have high blood pressure, and you would never know. What about the family members of people you interact with? It’s impossible for you to know that the teenager you sat next to on the bus lives with elderly grandparents, or that the clerk at the convenience store has a child with cystic fibrosis. Yet your behavior and choices place all of them at risk.
No one is safe until everyone is safe. That’s not a hyperbolic slogan. It’s science. But we’re not thinking about it that way. Whatever collective motivation we had to flatten the curve two years ago is gone now. People have decided they’re “done” with the pandemic–as if what we want has anything at all to do with it. Our government and public health apparatus has completely failed to remind people that public health requires action from everyone.
Public health measures, which should be about science, have become politicized hot potatoes. We’re fighting about whether to mandate masks or vaccines, instead of coming together to fight the virus. COVID is never going away. We do have to find ways to live with it. What I don’t understand is why living with it can’t include minimizing disease and transmission. Why can’t we take steps to protect one another from the worst impacts of COVID? We live together in a community, with a social contract. Why doesn’t that social contract mean that we do what is necessary to limit the damage of this historic pandemic?
I don’t want division, but we are divided. Some of the people I love are not vaccinated. I love them just as much, and I don’t want to be separated from them. Yet in order to protect my own life, I cannot spend time indoors with these dear ones. Their choice to forego vaccination has taken my choice to interact with them. They have made that choice for me.
I want this pandemic to be over. I want to leave my house again without wondering how many infected people are crossing my path. I want to interact with my friends and community again. But America has decided that the individual choice to forego precautions is more valuable than my safety. I don’t understand how that calculation balances out.
I know I’m not alone in wearing despair that cloaks my rage. Read what people are saying, like Amil Niazi, a parent of children under five, who writes, “I’m angry, sad, frustrated, obliterated, abandoned, but more than that and worst of all, I feel nothing.” Read these powerful words from disability justice advocate Mia Mingus:
The effects of this pandemic will stretch years into the future, and many books will be written about it. There will be many reckonings at all levels of public life, and continued grief in individual lives. But one thing I don’t think most people realize is that there will be a reckoning over whose lives and choices were valued, and whose lives and choices were tossed aside.