In what will probably be the last word from NIH on the invited lecture by Dr. Edward Shorter, the Trans-NIH ME/CFS Working Group has issued a follow up response to the ME community. For background, read my open letter to Dr. Koroshetz, his response to the community, and my verbal line in the sand. Here is the full text of the Working Group’s follow up response, followed by my thoughts.
Dear members of the ME/CFS community,
You have written to express concern about the NIH lecture by Edward Shorter that took place on November 9th. Thank you for sending us your thoughts.
Please know that the lecture you asked about was not sponsored by either the ME/CFS Special Interest Group or the Trans-NIH ME/CFS Working Group, which means that it does not reflect the ideas, opinions, or policy of the NIH or the scientists now working on this disease. Given the professional and learning environment that NIH promotes, dozens of people come each week to the NIH to exchange ideas with NIH scientists; the scientists who attend these lectures frequently challenge or disagree with the speakers’ ideas. In scientific circles, disagreement with what is said is often more scientifically productive than agreement. The exchange of information and divergent opinions, followed by critical analysis, is essential to moving any field forward. The most important thing that we wish to share is that NIH remains firmly committed to using scientific methods to uncover the biological mechanisms that cause ME/CFS and to improve the lives of people who have been suffering for years, and even decades. Comments made in a seminar will not undermine the progress of science at NIH.
Several of you have asked why the lecture was not mentioned during the telebriefing that NIH hosted on November 2nd. The telebriefing was intended to discuss the efforts of the Trans-NIH ME/CFS Working Group and the progress made in initiating the NIH Intramural research clinical study. The lecture was not part of those efforts.
The speaker shared his viewpoint, the scientists who attended asked questions, and perspective was provided by a patient and a community physician. The lecture was attended by approximately 15 scientists, including some who are part of the clinical study investigative team. It is fair to say it will have no impact on NIH’s interest in doing everything we can to advance the science of ME/CFS.
The Trans-NIH ME/CFS Working Group
We already knew that the Shorter lecture went forward yesterday, and the person with ME who attended shared a brief summary on Facebook. Today’s after-the-fact follow up is clearly an attempt to smooth things over, and put it behind NIH. Whether the ME advocacy community is ready to drop it remains to be seen. But I have a few thoughts.
First, they passed the buck. In this email, the Trans-NIH Group and the ME/CFS Special Interest Group disavow responsibility for inviting Dr. Shorter. The Solve ME/CFS Initiative reported that it was the National Institute of Nursing Research that invited Dr. Shorter, although there is only speculation as to who specifically did so at NINR, or why.
Second, there is a little touch of NIH-splaining: “disagreement, followed by analysis, being more productive than agreement in scientific circles.” Yes, thank you, ok, we get it. Differing points of view and interpretations of data are what helps move science forward. Yes. Uh-huh.
But that was only part of the point of our protests. I don’t think any of us would object to NIH inviting a scientist who argued ME was an autoimmune disease instead of an infectious disease (or vice versa). That is an example of divergent opinions that can eventually be resolved through critical analysis and more research.
We were never protesting the invitation of someone with a divergent or even unpopular view. We were protesting a) giving the microphone to an opinion that not only is not based in fact, but is disproven by reams of data; and b) giving the microphone to a person who insulted and denigrated ME patients and the National Academy of Medicine in an article last year (and who has a long history of misogynistic statements, according to the reviews of his work done by other ME advocates). THAT was the problem.
I am by no means the first person to suggest the following mind exercise for communicating with the ME community, but it is especially useful in this instance: Take out the word “ME/CFS” and replace it with “HIV/AIDS.” Here’s how Shorter’s remarks play out in this hypothetical:
- There have been no convincing new HIV/AIDS studies . . . And there never will be.
- the HIV/AIDSers appeared in mass to pour out their tales of woe.
- The public hearings were a circus, with moaning and groaning HIV/AIDS victims right and left.
- [W]hat many of these HIV/AIDS patients have is a kind of delusional somatization, the unshakeable belief that something is wrong with their bodies rather than their minds.
Absolutely horrific, right? No one in their right mind would speak this way about people with HIV/AIDS. Now reread the two NIH responses. Are they adequate responses? Do they express the right degree of apology and conciliation? If someone were invited to NIH and that person had previously spouted such vile comments as above, would “In scientific circles, disagreement with what is said is often more scientifically productive than agreement” be an appropriate apology from NIH? Do I even have to ASK that question?
The distance between the apology that would be immediately issued by NIH in the above hypothetical and the response we got today is instructive. We have a very, very far way to go until it becomes as unthinkable to insult people with ME as it is to insult people with HIV/AIDS. And all of us have a lot of work to do to get there.
Finally, we have an olive branch of sorts: “NIH remains firmly committed to using scientific methods to uncover the biological mechanisms that cause ME/CFS . . . Comments made in a seminar will not undermine the progress of science at NIH. . . . It is fair to say it will have no impact on NIH’s interest in doing everything we can to advance the science of ME/CFS.”
That’s not an apology, but it is probably as close as we will get in the public sphere. This is too bad. Dr. Koroshetz and the Trans-NIH Group let a golden opportunity to win the ME community’s trust slip through their fingers.
Last week, Dr. Koroshetz could have said, “I understand why you have serious concerns. Let me look into this.” Then, Koroshetz or the Trans-NIH Group could have told us that NINR was responsible, and that NIH in no way endorses Shorter’s historical, scientific, or individual opinion of ME and people affected by ME. Koroshetz could have: 1) apologized that this invitation created the impression that NIH had not changed since the bad old days; 2) acknowledged the terrible timing (coming so soon after the IACFS/ME meeting and the telebriefing); 3) offered his assurance that disrespecting and demeaning people affected by any disease is not acceptable for NIH employees or guests; and, 4) proposed a solution to make the situation right. If he had done that, I would personally be leading a standing ovation right now.
Instead, we got an olive branch and a less direct acknowledgement of the screw up. And quite frankly, that is more than we have gotten from government agencies at various points in the past.