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
Thank you for your steadfast coverage of all things NIH. Is there anything we can do as a community? Is there a mechanism for asking them to publicly correct the record?
There’s no mechanism that I’m aware of. I hope the community will discuss this with NIH. Combatting NIH’s internal dialogue will be more challenging.
Wow, Jennie–what a story your skills have dragged out of the NIH closet! We can’t thank you enough–brilliant work!
Chris
Thank you Chris!
Okay, so Vicky Whittemore wasn’t aware that the information she gave out was wrong. But now that she is, surely there is a sensible solution. She and the NIH could make it clear that the “death threats” meme is wrong and promise not to repeat it.
That would be great, if someone can get them to agree. But there’s still the issue of the story circulating within NIH and I don’t know how we combat that.
Thank you Jennie. I hope your investigations will cause the NIH to cease this shocking innuendo.
I read this and I thought, “right, as if most people with ME/CFS were able to march farther than about three feet, let alone march carrying guns.”
I’m joking and I’m not. That’s how little they understand us and how dismissive they are of both of and of the symptoms of this illness.
While I’m lying here on my bed, on a gorgeous spring day in Florida, too exhausted to do anything at all, I’m going to write to Dr. Whittemore very politely and ask for specific details about these death threats.
Namaste, everyone.
Thanks for covering Jennie. Great writing as always.
Just curious, does Vicky respond to most e-mail messages when contacted? Would you advise for others to contact about this SEP/pseudo-threat situation?
I’m taking the liberty of responding because I’ve been doing a lot of emailing lately about various health issues and so far, it’s been my experience that people who’ve chosen careers in public service – when, let’s face it, they’d have much better working conditions and be vastly better compensated in the private sector – take their responsibilities extremely seriously. As I wrote in my email and as others have said, I don’t question Dr. Whittemore’s belief in death threats; I did ask her to please consider, as a public official and as a scientist, whether there’s any evidence grounding this belief and whether it serves any interest to assert now, as fact, that death threats have been made.
The reason why patients want to know who is reviewing the ME grants is to ensure that the reviewers are qualified, knowledgeable of the disease and are not promoting the BPS approach which has prevented a biomedical approach in research. It is disconcerting to think that the ‘death threats’ and ‘militant patients’ rumors are still floating around. As if we could even show up and march- at best it would be a wheelchair and mobility scooter parade.
Thank you, Jennie, for your outstanding blog and for sharing the facts behind Dr. Whittemore’s exaggerated accusations. If only NIH shared information based on facts and evidence. Sigh.
That NINDS director Dr. Walter Koroshetz (who was also on the telebriefing) said nothing to contradict or mitigate Dr. Whittemore’s irresponsible public statement was equally disturbing.
NIH Director Dr. Francis Collins and Trans-NIH ME/CFS Working Group chair Dr. Walter Koroshetz have for years told the ME/CFS Community, many of whom are too sick to bathe or otherwise care for ourselves, that it is *our* responsibility, not NIH’s [1,2,3], to recruit new researchers and clinicians to the field.
Bearing in mind the complex and overwhelming tasks that NIH leaders have offloaded onto this profoundly debilitated patient community, did Doctors Koroshetz and Whittemore consider the additional reputational damage they and NIH would cause to the ME/CFS Community with exaggerated accusations? They make our community’s efforts to advocate for the most underfunded disease (with respect to burden) in NIH’s analysis of funding and disease burden [4] even more difficult.
During the same NIH ME/CFS teleconference Doctors Koroshetz and Whittemore quickly dismissed patients’ requests for NIH leaders to actively debunk rampant ME/CFS stigma and misinformation. When asked about recent articles penned by medical doctors that psychologized ME/CFS and long Covid Dr. Whittemore responded, “It requires no comment for anybody in this day and age, so that’s not what otherwise want to be spending our time and effort on it.” Dr. Koroshetz said, “So I’m hoping [for] reduction in stigma due to the fact that there’s so many people with post-acute COVID symptoms, that, that, that will reduce stigma for ME/CFS as well.”
Stigma and medical misinformation do require comment, Dr. Whittemore. As for Dr. Koroshetz’s magical thinking, our community requires a rational thinker, not a fantasist.
Their responses demonstrated two NIH leaders gaslighting the ME Community after years of our clear explanations to them about ways in which stigma and medical misinformation pose dangers to people living with this disease.
~
NIH’s 30 March 2021 ME/CFS Telebriefing illustrates that NIH still cannot seem to stop itself from further stigmatizing and disparaging people living with ME/CFS. We deserve competent and committed ME/CFS leadership from NIH–something we have yet to see.
1. https://www.nih.gov/nih-me/cfs-advocacy-call
2. https://www.nih.gov/nih-me/cfs-advocacy-call-0
3. https://www.nih.gov/research-training/medical-research-initiatives/mecfs/nih-me/cfs-advocacy-call-november-2017
4. https://pubmed.ncbi.nlm.nih.gov/32568148/
Get rid of Vickie Whittemore and Walter Koroshetz, Sharon, and we will truly be in the dark ages over there – like when we were getting $6 million a year in funding.
To be clear, Cort–Sharon did not say Whittemore and Koroshetz should be removed.
I’m guessing the real issue is that these people just don’t want to hear from us. Keeping their names under wraps really means they don’t need to take responsibility for what they do. And advocates for ME / CFS are just too whiny and pesky! Gee – I wonder why that would be when we’ve been discounted for so long?
I think it is important that you looked into this. There was, in fact, no threat at all since a hearsay statement from a reporter is hardly evidence. It amazes me that his unproven comment was taken so seriously. There was no reason to believe he was telling the truth – he could have made it up out of whole cloth!
Brilliant detective work Jennie. I don’t blame Vickie – she was passing on “received wisdom” that’s been circulating through the NIH for a decade apparently and it turned out to be wrong. Now that you’ve taken the time to dig up the facts I hope the NIH will take them into account and get off this dangerous ME advocates theme.
The idea that death threats were given to researchers was reported widely during the XMRV saga particularly in the UK.
https://blogs.sciencemag.org/pipeline/archives/2011/09/06/chronic_fatigue_enough_energy_left_for_death_threats_anyway
https://www.nationalgeographic.com/science/article/chronic-fatigue-syndrome-death-threats-for-scientists
https://www.the-scientist.com/the-nutshell/chronic-fatigue-scientists-get-death-threats-42049
https://www.dailymail.co.uk/health/article-2020241/Scientists-investigating-ME-death-threats-investigating-psychological-causes.html
Dr. McClure reported in the Guardian
“I published a study which these extremists did not like and was subjected to a staggering volley of horrible abuse,” said Professor Myra McClure, head of infectious diseases at Imperial College London. “One man wrote he was having pleasure imagining that he was watching me drown. He sent that every day for months.”
Those were heady and turbulent times but it’s clear that whoever did that did us no good. Here we are 10, so far as I can tell, uneventful years later with none of that going on and the idea is still circulating. It’s no surprise. That stuff sticks.
Hopefully, after your piece it won’t stick so well.
Thanks for this article – but I must say I’d never heard of this. It just seems they use any excuse to do us out of research funds and coverage.
I hope for a public apology from the NIH – not that we’ll ever get it.
The NIH has it backward. It is people with ME who are under actual threat of death and who have actually died due to the behavior at the NIH.
THANK YOU. One day I hope your rigorous investigative efforts will be rewarded with the congressional medal you deserve (or whatever it is your govt gives heroes).
Love and appreciation xxx
It sounds as if the call to Dr McClure was not related to ME patients or ME
activists.
The most simple explanation was that it was from a journalist or someone not related to the ME community who wanted to stir up trouble or get her talking for their own benefit.
There is always the possibility that it was a prank call from a troll. We do see a lot of trolls online who find patients suffering amusing and like to add to it. It’s not a stretch of the imagination to see one of these people trying to frighten a researcher.
In the absence of any evidence that this was a person with ME or anyone related I think we can assume it wasn’t one.
I have an extended family member who sent me vile abuse around that time. It doesn’t surprise me how sick minded people who don’t have ME or support us can feel the need to do stupid things to hurt us more.
“her comments last week based on a story she heard from someone else at NIH, a story which she says contained no specifics.”
I wonder whether we should conclude that NIH makes policy based on gossip, or that they simply lie about everything all the time. Or both.
The Long Covid people who are now organizing themselves and demanding real research and treatment will be very interested in Ms Spotila’s latest essay. They are starting to understand what they and we are up against. They will be shocked at the scale of the abuse ME patients have endured for decades.
The sheer number of Long Covid people makes them a force to be reckoned with. They are not going to quietly sit on their hands and wait decades for NIH and CDC to do something more than can-kicking. Can’t wait to cheer them on.
I appreciate Vicky’s apology.
Thank you for posting it.
I hope NIH will take concerted, visible action to eradicate this and all other misinformation about ME.
Thank you Ms. Spotila.
To me it is all of a piece in the whole cloth of NIH and CDC preferral of categorizing ME/CFS as psychological not medical. viz ‘not their responsibility’.
WOW! thank you for digging up what did happen!
Further, Ms. Whittemore and all PWME and prospective researchers or panalists need to be aware that the histrionic tone of the Guardian article accusations reflects the political ambitions and public relations campaigns derived by certain UK medical professionals who have been employed for rather grand sums of money by insurance companies to construct an atmosphere and mythology around ME and CFS as products of “false beliefs” and therefore not eligible for full payment of disabilty insurance claims despite premiums paid out of pocket. Stakes were high and swords similarly sharp.
All concerned need to remember that unofficial official policy from NIH has been profoundly negative towards ME and CFS ever since the period following the Incline Village outbreak of 1984-85. Political and economic factors dictated that the outbreak of what outside experts recognized as the all-too-consequential neurological disease ME (listed at 93.3 in WHO’s ICD since 1969) would have to be segued downward towards forgetableness as the dismissively-named “malingering” syndrome of Chronic Fatigue (Syndrome.) The Lake Tahoe region’s $3 billion annual revenues depend on tourism, and much of Northern Nevada’s economy is linked to Tahoe’s. “They hate you,” commented one NIH veteran to a PWME audience, when asked not so very long ago how NIH regarded PWME.
Jennie your efforts are in this instance as in all the other blogs you wrote that I’ve read is outstanding. I recall the panic leading up to the P2P meeting as well as the Acadamy of Science Panel and although these were both immensely important to our community the fact that the panels included participants who were unknown to the patients stirred much fear and frustration and in some cases disrupted long friendships as advocates argued for the best course of action. Clearly, there were people wanting to disrupt and individuals who said worse, and I do not believe it is a one-off for bullying/intimidation efforts. Yes those things did happen and on occasion can still be found on social media platforms. Should someone chose to take on the documentation of the history of our advocacy and interaction with the powers that be there is enough material for a dissertation in Public Health Polic and Patient Interation. We are not a monolithic group, nor is our membership void of patients who vent frustrations utilizing unproductive means. We are sick, but not entirely innocent of attempting to disrupt, guilt, and express anger toward those individuals we target as failing us or at least not champion our efforts. Just as we do not want officials to paint us as dangerous or off-balance we, I believe need to own up some of the nastiness that some of us would be more comfortable to sweep under the carpet. People who have not been active in this community for more than 10 years will likely have little or no idea what transpired before. Further, I bet fewer than a handful of advocates have even read Steven Strauss’s book as it is so much easier to vilify NIH and forget the context of what was even possible. Yes 10 years ago was a long time ago and we should not forget, but we also need to figure out how to help those who would help us rather than to disparage.
As a person who lives with ME, your post defending NIH offends me deeply.
Jennie’s post recounts a key NIH ME/CFS official who, last week, falsely reported multiple death threats against multiple ME/CFS grant reviewers. Death threats.
There is no equivalence between disruptions and false, stigmatizing and disparaging reports of death threats.
If anyone believes that the ME Community has not expended years of considerable and earnest efforts educating people at NIH so that they can help us – they have not been paying attention.
Robert while I agree that it was unfortunate that these comments were raised it does no good to pretend that it did not happen. While I did not memorialize similar comments posted on social media I do recall them and clicked past them. We can maybe agree that those particular actions do jot represent the patient population as a whole. Actions have consequences, and offended or not what others do will seemingly impact all of us.
“We are sick, but not entirely innocent of attempting to disrupt, guilt, and express anger toward those individuals we target as failing us or at least not champion our efforts. Just as we do not want officials to paint us as dangerous or off-balance we, I believe need to own up some of the nastiness that some of us would be more comfortable to sweep under the carpet.”
It is more than unfortunate that NIH official Dr. Vicky Whittemore falsely stated what she did: It was damaging to the ME Community. The ME Community neither caused nor deserved this.
Nothing members of this community have ever done could justify NIH’s Dr. Vicky Whittemore making such serious false accusation. That’s like saying someone who was assaulted deserved it. No. People with ME did not deserve to be falsely accused of making multiple death threats against Multiple ME/CFS reviewers.
Before this devolves into an argument, I would like to summarize a few things.
It is correct that there has been bad behavior online in the past. I have been the target of some of that behavior, as have many others. Some bad behavior continues today.
However, bad behavior is not the same thing as death threats. And actual bad behavior IN NO WAY excuses or justifies false accusations of bad behavior, especially stories of death threats. And any time an NIH official makes false statements of any kind–intentionally or accidentally–it is something that we must address with NIH.
In addition, we should recognize that the ME/CFS world in 2011 was embroiled in the XMRV controversy. This controversy had consumed advocates, researchers and policy makers alike. Everyone was on edge, everyone had witnessed bad behavior from someone–advocate, researcher, policy maker. No group of people was completely innocent. Emotions were running very high. This no doubt lent credence to all kinds of stories, and perhaps some stories were accepted that would not have been accepted in calmer times.
The fundamental principle is to speak with care, especially when making accusations or repeating old stories.
I agree Jennie, thank you.
All of us in the ME/CFS community owe you a debt of gratitude, Jennie. This is truly a remarkable piece of research and writing. Thank you thank you thank you.
Toni
Thanks again for your attention to detail when investigating the NIH. There is no way that the power players there didn’t know this story; and narrative, were far from truth! It should have been debunked years ago when it happened.
This was allowed to continue for reasons that we may never know. We have been overlooked and underfunded for as long as I’ve been sick (36 years). You are one person that I admire in all this gloom and doom, keep them on their toes, and watching their backs! Is it sad that I am entertained by their discomfort at times like this? We all deserve an apology for the NIH incompetence. Done venting!
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This is brilliant work, Jennie, thank you.
Thanks Lisa!
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