Dr. Avindra Nath, the NIH official leading the new clinical study on ME/CFS, was there on that patient conference call, coming in late. In fact, you can listen to it or read the transcript here.
When patients found out about this from someone not at the NIH, advocates sent out the alarm. One of them was Jennie Spotila. She wrote a blog and sent a letter to the leader of the National Institute of Neurological Diseases and Strokes (Dr. Walter Koroshetz) because Shorter's 2015 comments about ME/CFS were disparaging of the patients and discredited the biological basis for the disease (along with a book he wrote about it in the '90s).
I too wrote a letter. My letter focused on why the NIH officials did not reveal this upcoming ME/CFS talk at NIH to the ME/CFS patients. This withholding of information about the NIH activities on ME/CFS is a threat to the trust NIH is supposedly trying to build among ME/CFS patients.
Koreshetz, sent a response.
Discussion among patients online during that time was about who invited Shorter. With assumptions being made, I asked if anyone had asked the NIH who did it. No one had. My journalism history and sense of fairness make me find out, not assume. But I did not think it that important at the time.
Then I heard what Shorter said during his presentation. And that just got my goat. After getting past some other more pressing duties, I decided to pursue finding out who at the NIH invited Shorter and who approved it.
After asking other prominent advocates if they had pursued finding out or if they planned to, I saw it was up to me if I wanted to find out. I could have filed a FOIA request, but I thought maybe I could just ask someone who understands the importance of communications at the NIH and avoid the long process of FOIA. I contacted the Communications Department at the National Institute of Nursing Research, which is where patients thought the invitation started and was approved.
And, they responded with the following:
“The recommendation to invite Dr. Shorter to speak at the NIH last month was made by Dr. Brian Walitt of the NINR. The recommendation was approved by Dr. Avindra Nath, the Director of Clinical Research at the National Institute of Neurological Disorders and Stroke Division of Intramural Research."
This caused me to send an email to Dr. Nath and Dr. Walitt. First, I reminded them of some of Shorter's comments about our disease:
· The IOM report was an “embarrassment . . . valueless, junk science at its worst.”
· “Nothing has changed since then  in scientific terms. There have been no convincing new studies, no breakthrough findings of organicity, nothing. And there never will be.”
· “[W]hat many of these patients have is a kind of delusional somatization, the unshakeable belief that something is wrong with their bodies rather than their minds.”
· “[I]n the several [IOM] public hearings the CFSers appeared in mass to pour out their tales of woe.”
· The public hearings were a circus, with moaning and groaning victims right and left.”
· “What is required to convert these inchoate and nonspecific symptoms into an illness is an act of belief, a psychic epidemic, in other words. And my feeling as a historian is that this is what we are now dealing with in the ME/CFS movement.”And I then asked Dr. Nath other questions. (Dr. Walitt was sent similar, some the same, questions):
1. Did you, as the NINR Communications Department says, approve Dr. Edward Shorter as a speaker on the topic of the history of ME/CFS to be given at an NIH facility to NIH personnel?
2. If you did approve this, did you know at the time of his 2015 negative and dismissive comments about patients and his theory of ME/CFS being a “psychic epidemic”?
3. Since you were on the phone call with patients just before this presentation (with one of the call’s goals to create more trust in the actions NIH is taking to study ME/CFS and keep patients informed), why did you not tell patients of this imminent presentation since it was on the disease the patients have?
4. Shorter wrote a 1992 book and has written columns with his theory of ME/CFS. And his bio says he is an expert on psychiatry history, not ME/CFS. If you did approve Shorter as a speaker on the topic of ME/CFS history, what clinical or research experience in ME/CFS did he have that convinced you he had scientific, evidence-based information that would benefit scientists at the NIH?
5. Did you attend his presentation?
6. If you did attend it, did he acknowledge the biological abnormalities that have been accepted by clinical experts and the large majority of researchers in the disease (such as diminished aerobic capacity-especially within 24-72 hours of an exercise test, metabolic abnormalities, immune system abnormalities, neurocognitive deficits-especially in multi-tasking and executive function, endocrine dysfunctions-such as low and evening peak of cortisol, numerous brain abnormalities, etc.)? Or did he again promote a psychosocial theory for most of those who are diagnosed with ME/CFS?
7. Do you agree with Shorter’s primary thesis (as of 2015) of ME/CFS being a psychic epidemic or a psychosocial condition instead of an organic disease?
8. Which parts of his presentation do you think might contribute to your team’s better understanding of ME/CFS?
9. In this process, looking back at how this event happened, would you have done anything differently based on what you now know and seeing the effect it had on patients and their attitude toward the work NIH is doing in ME/CFS?
After not getting a response in a week, I contacted the NINDS Communications Department to see if I should wait (holidays may have distracted them). Marian Emr responded to me confirming the information sent to me from the NINR Communications Department and sent me a previous response to patients. She said it would answer some of my questions. This is that earlier response:
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
This led me to ask more questions:
If this is not part of effort of Trans NIH ME/CFS Working Group or the clinical study, then why does the leader for the ME/CFS clinical study in a completely different institute (NINDS) approve a suggested speaker from someone at the NINR? Wouldn't the boss within that institute (NINR) approve it if the presentation is not part of the cross agency efforts on the disease or the clinical study of that disease? Is it common for someone at the NINR to recommend a speaker to someone at the NINDS?
Also, if Shorter's presentation will not influence the research at NIH on ME/CFS, then was he just invited as a mental exercise in debating skills for NIH personnel?
I also pointed out that most of my questions were not answered:
1. . . . did you [Walitt and/or Nath) know at the time the invitation was made of [Shorter's] 2015 negative and dismissive comments about patients and his theory of ME/CFS being a “psychic epidemic”?
2. . . . what clinical or research experience in ME/CFS did he have that convinced you [Walitt and/or Nath] he had scientific, evidence-based information that would benefit scientists at the NIH?
3. Did you (Walitt and/or Nath} attend his presentation?
4. . . . [In the presentation] did [Shorter} acknowledge the biological abnormalities that have been accepted by clinical experts and the large majority of researchers in the disease (such as diminished aerobic capacity-especially within 24-72 hours of an exercise test, metabolic abnormalities, immune system abnormalities, neurocognitive deficits-especially in multi-tasking and executive function, endocrine dysfunctions-such as low and evening peak of cortisol, numerous brain abnormalities, etc.)? Or did he again promote a psychosocial theory for most of those who are diagnosed with ME/CFS?
5. Do you [Walitt and/or Nath] agree with Shorter’s primary thesis (as of 2015) of ME/CFS being a psychic epidemic or a psychosocial condition instead of an organic disease?
6. Which parts of his presentation do you [Walitt and/or Nath] think might contribute to your team’s better understanding of ME/CFS?
7. In this process, looking back at how this event happened, would you [Walitt and/or Nath] have done anything differently based on what you now know and seeing the effect it had on patients and their attitude toward the work NIH is doing in ME/CFS?
I was told to use the previous response. (That means no.)
In emailing Ms. Emr, I explained why inviting Shorter is so confusing to patients, especially in light of the new effort we've seen at the NIH in relation to ME/CFS:
To many of us patients, Shorter's theory is akin to having someone say that MS is female hysterical paralysis (a viewpoint common in the early 19th century but which has been disproven by science). I'm sure if MS patients knew the NIH invited someone to speak to scientists promoting that outdated and unscientific theory, and the person had not actually published a peer review paper on MS, it would be very disconcerting and confusing to MS patients. It's not a differing view of scientific theories that can be debated. It's not like questioning whether EBV plays a role in the development of MS, which could be debated by scientists at this point. The theory of MS being female hysterical paralysis has no scientific basis, so why would someone be presenting that MS is female hysterical paralysis to scientists for scientific debate? Where can progress come from such a presentation?
I will let everyone draw their own conclusions on what this new information, the responses, and refusal to respond means. But, I do recommend that on the next (and all future) NIH call(s) with patients that the patients start off by asking, "Does any of the NIH officials on this call know of a presentation on ME/CFS that will be given in the next 6 months at any of the NIH facilities or arranged by someone at NIH?" They won't tell us on their own. And when asked why they didn't tell us, they'll say it wasn't the topic of the call, even though they mention a whole bunch of other stuff they are doing for ME/CFS, including attending conferences. And even though the person who approved the presentation is there on the call and is the leader of the special interest group doing the clinical study that is the topic of the call.
The next call for patients is February 1.
I don't want this to detract from the positive actions NIH is taking for our disease. But clearly you have to ask specifically about speakers they host because you can't trust they will tell you things that we want to know about their ME/CFS activity. And we know Walitt and Nath thought Shorter was an appropriate speaker to scientists on the topic of ME/CFS. We don't know if they didn't know about his disparaging comments before the invitation was made or if they knew and somehow thought he could contribute to scientific knowledge of the disease.