By David Tuller, DrPH
In early 2011, the first report of the PACE results in The Lancet drew widespread criticism from patients and advocates. Later that year, stories about unhinged, anti-science patients harassing and threatening leading researchers in the field appeared in high-profile UK outlets like BMJ and The Times. In the UK, this appears to have been orchestrated with the help of the so-called Science Media Centre, which has always backed the crap produced by the members of the biopsychosocial ideological brigades.
The rumors of “death threats” from ME/CFS patients were not, however, confined to the UK. In her blog Occupy M.E., Jennie Spotila last week excavated how the “death threats” meme traveled to the National Institutes of Health–and finally gets to the bottom of the story. You can read it here or below; I am re-posting it in full with her permission.
The Death Threat Myth Exposed
April 6, 2021
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:
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.
10 responses to “Jennie Spotila Tracks Down–and Busts–an Old Tale About “Death Threats” from Patients”
thanks Jennie and David.
Some days the mountain top seems higher and higher and …….. shrouded in mist, a peak that we will never get to the top of. And yet I sit here with a 10 year anniversary looming and wonder what, when, will there ever be an option to end this miserable condition. And I’m not bedridden! well just every now and again I am.
Such lies and exaggerations have done immeasurable harm on both sides of the Atlantic. But that’s what they were intended to do. Doctors across medicine have believed this tripe and have been made fearful, not only of ME patients in particular, but of patients in general, to the point of being suspicious of all their patients and loathing them for what they could potentially inflict on themselves and their families. What used to be a ‘caring’ profession has been turned into a defensive profession where patients are perceived to be the threat. To my mind, that’s unforgiveable, (but I think we should forgive those who have been used and who now apologize for their part in it).
The withholding of the names of the reviewers here reminds me of the HRA investigation into those research papers that were co-authored by Crawley –https://www.virology.ws/2019/10/28/trial-by-error-the-hras-letter-about-the-investigation-of-bristol-research/ where the HRA withheld the identity of the investigation panel members ” in light of the controversy surrounding this area of research”. Mud sticks, and so much mud has been thrown at ME patients and their advocates by the BPS cabal, (and by 2 men in particular).
But we mustn’t forget the use/misuse of the cherry-picked ‘stomach churn’ quote by Professor Chew-Graham either – e.g. here -https://www.youtube.com/watch?v=2HLLDStF2v4&t=2s at 26.0 mins
The quote originally came from this paper -https://academic.oup.com/fampra/article/19/2/178/490943 – but was widely disseminated to British GPs here -https://bjgp.org/content/67/656/106 .
Apparently there is nothing doctors can do when faced with these patients, they are rendered powerless. Powerful stuff!
And sorry, I meant to say, we mustn’t forget the mud thrown at David, what he’s had to put up with.
I don’t think it’s good enough for Whittemore to ask the community to disseminate her apology. I think the apology should be disseminated by the NIH in a way that doctors might actually notice it. Once again the patient population is being tasked with clearing up a mess not of its own making. Patients continue to assume the role of the abused wife or the Stockholm syndrome victim … this is not OUR transgression to advertise, if Whittemore really wants to make a difference & clear up this confusion she needs to do better than this. If I was marking her paper it would be a ‘could do better’ D+.
Rosie Cox, I hadn’t thought about it that way, but you’re right. The apology means little unless doctors are made aware that their patients have been badly wronged.
But the newspaper says they have no reporter with the name given. Isn’t that important? Was there really any threat made at all?
I realize that laws don’t mean much to government officials, but sometimes they can be made to follow the law.
Although the federal government exempted itself from the Americans With Disabilities Act, they failed to do the same with Section 504 of the Rehabilitation Act, which states in part:
“No otherwise qualified individual with a disability in the United States … shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance or under any program or activity conducted by any Executive agency…”
This law has been used by parents to force school districts and state agencies to properly fund programs for children with various special needs. I am suggesting that ME patients are disabled and have been systematically denied the benefits of adequate research, accurate physician education, access to treatment, etc, etc.
It is reasonable to question whether large sums would be better spent on lawyers or on medical investigators. I suggest that in the current environment, even if a miracle cure were discovered tomorrow, few would have access to it, if for no other reason than so few ME sufferers can even get a diagnosis.
Thirty years of phone calls, letters, lobbying, demonstrations, etc. have had little effect. It’s well past time to take these agencies to court and force them to do their jobs.
Thank you, Jennie, for pursuing and fact-checking the veracity of the NIH’s claims.
Can this list of reviewers understand enough about the current state of research to push vital diagnostic research grants through?
Interesting that this event became an urban myth and has created strategy by misrepresenting a whole patient group.
We have experienced issues in the UK when the PACE research data was requested. A tribunal heard that m.e patients and advocates were abusive and there were death threats. The tribunal asked for evidence and found that there was none. However, this label about m.e sufferers and advocates has stuck and gets repeated in news articles and social media posts. It’s used as a way to shut the conversation down around the issues of bad research and it’s affect on sufferers.
It’s shocking that people are allowed to ruin the reputation of a group of vulnerable patients based on either no evidence or a one off event.