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.
Regards,
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.
This ‘olive branch’ also starts out with a lie. This letter says, “Please know that the lecture you asked about was not sponsored by either the ME/CFS Special Interest Group.” But the notice on the NIH Intramural Research Program (IRP) starts, “The ME/CFS Special Interest Group presents a lecture, “Chronic Fatigue Syndrome in Historical Perspective”…”
Also, they did not answer the question as to why the 4 biomedical researchers only spoke to the ME/CFS Special Interest Group while Shorter was sponsored to speak to the larger NIH IRP.
There have been no convincing new CANCER studies . . . And there never will be.
the CANCER sufferers appeared in mass to pour out their tales of woe.
The public hearings were a circus, with moaning and groaning CANCER victims right and left.
[W]hat many of these CANCER patients have is a kind of delusional somatization, the unshakeable belief that something is wrong with their bodies rather than their minds.
thank you Jeannie for all your advocating. Thank you for your anger on behalf of all of us who are ill. Thank you for your work in articulating and communicating it. It makes a big difference to me. <3 Kate
Ditto! Well said!
Ditto!! Well said! Thank you, Jennie!
I also want to say: Ditto! Very well put!
A thousand thanks, Jennie, what you do means a lot to so many of us.
Thanks for doing this – he is obviously listening to you.
He is equally obviously not happy about having to defend their practices to outsiders.
And tact is significantly missing – he knows how we’ve been mistreated/ignored/discounted – and yet there is no effort to not let this kind of lecturer speak at NIH. Who knows what he told the nursing people that stuck with them – and how it will affect treatment of people in their care. Because no one can control what people do with what they selectively hear. Better it had never happened.
And I also see no effort to avoid this kind of speaker in the future.
More of the usual, served with sauce to disguise it.
While I am VERY glad that neither the Trans NIH Working Group nor the ME/CFS SIG were behind this invitation, and I am very glad that they emphasized their commitment to biological work, I agree that everyone – Koroshetz and now these groups – passed the buck on the most critical point: why the NIH allowed a man who jeered at, and denigrated an entire community to present a talk on that community.
It’s clear that the reason they passed the buck on that question is clearly that they have no good answer to it. There was nothing they could say that would make any sense to the proposition that people who in print, no less, mock other people’s illnesses shouldn’t be presenting on those illnesses at the NIH.
The big question is why that argument – a really good one – wasn’t enough…I guess we’ll never know.
Great response, Jennie!
FYI, that exact same letter was what Ron got from his email to Francis Collins.
Wow, the good thing is that Dr. Davis finally got a response from Dr. Collins; the bad thing is it was the exact same BS and we all deserve more!
Janet, please tell Dr. Davis how much he gives us HOPE!
I believe he, and Naviaux, and the Aussies, and the Norwegians, and other random private researchers, are going to be our ONLY hope. Everyone PLEASE donate – DONATE DONATE DONATE – to private researchers like OMF.
Thank you Jennie for your immaculate analysis of the NIH responses (I’m a Brit but am following your championing of the ME community with huge respect and gratitude).
From my experience, persons in positions of power and with reputations to defend are often unable to grasp that a straight apology does more for their reputation than the mental gymnastics of attempting to defend the indefensible.* As you make so clear, the NIH responses simply side-step, rather than answer, the two main points you made.
For me, you have exposed the embarrassing inadequacy of the NIH reasoning in their responses. One can hope they will be more thought-through in future dealings with the ME community.
* Sorry, but an unsuccessful candidate in your Presidential election springs to my mind!
Thank you so much for your kind words, Christine! Yes, there are cultural or customary ways of thinking that can get in the way of really saying or doing the right thing. And it’s hard for anyone to admit they were wrong. So I understand WHY we got the response that we did, but I am disappointed. NIH missed a really good opportunity to build a bridge to the ME community.
Another wonderful blog post! Great job, Jennie!
Re: the statement – “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.”
FYI: Brian Walitt in is the NINR. https://www.ninr.nih.gov/researchandfunding/dir/bwalitt#.WCU7rIXwMmQ I can’t help but think that if it wasn’t Walitt who requested Shorter as a speaker, it was someone in his NINR sphere of influence.
Thank you so much! There are several possibilities for who invited Shorter, Walitt being one of them. But I do not know for sure and have no evidence either way.
“It is fair to say it will have no impact”
LAUGH MY FUCKING ASS OFF
Open letter to Walter Koroshetz re invitation to Shorter. I subsequently copied this to the list of Directors and Administrators at the NIH, as well as posting on several advocacy FB pages.
Dear Dr. Koroshetz
The NIH has recently professed to have a serious commitment to developing research into ME/CFS.
As I understand it, your institute is meant to be developing a consortium of interested researchers across the NIH to get funding for medical research into this disease.
Promises made by Dr. Collins to begin to take this matter seriously have been followed by a cut in the limited funding previously available, and in a year in which a trillion dollars have been spent on RFA’s, no money has been made available for ME/CFS.
The NIH spent a million dollars funding the IOM report, which stated unequivocally that ME/CFS is mistakenly considered a psychiatric issue, and that it is a serious, very disabling disease (not a psychiatric disorder) of which the defining feature is that ‘exertion, of any kind…..may adversely affect many organ systems’.
The psychiatric model promoted in the UK holds that patients, after a mild viral illness, develop the ‘false belief’ that they suffer from a medical disease, and that exertion will make them worse. Based on this model, patients are offered Cognitive Behaviour Therapy, with the specific purpose of changing the belief that they have a disease, and Graded Exercise Therapy, providing systematic increase in physical exertion. (However, even the instructions in the UK NICE Guidelines acknowledge that during the course of such a program, the patient may suffer a relapse after which they are unable to return to their previous level of function.).
The 2011 Pace Trial purported to support that these treatments were both ‘safe’ and ‘effective’. However recent statistical analyses have shown that claims made were exaggerated, and over the long term these treatments had no different outcome from the others in the trial.
In contrast to the psychiatric model, the IOM Committee asserts that in fact we do have a serious medical disease, in which exertion can do multisystem damage.
Patient experience confirms that many who were mildly or moderately ill became severely and apparently irreversibly ill after conscientiously following a course of Graded Exercise Therapy. This would tend to support the view of many researchers that the pathogen involved is a virus, possibly similar to the polio virus, which is latent until stimulated by exertion. (The involvement of Coxackie B was apparently dismissed because lots of us have antibodies to Coxackie B. Lots of people also were infected with the polio virus; few got ill with a mild flu-like illness, and fewer of them…mostly the ones who exercised…went on to become paralysed. Intermittent paralyses are a common feature of ME, especially severe ME. But of course all of this is only based on small laboratory studies and patient experience and therefore doesn’t constitute ‘evidence’.)
Early researchers concluded that complete rest from the inception gave the best prognosis, and as they stated that the disease had ‘an alarming tendency to become chronic’, that suggests that under their treatment regime, there were patients in whom this did not occur. Today, with contemporary treatment regimes, it has become accepted that no one recovers completely, and many believe it inevitably follows a worsening path.
It has never been clear why a illness in which it is universally accepted that ‘exertion exacerbates symptoms’ has ever been considered one in which exercise was going to be a helpful prescription, and it is not. We don’t advise diabetics to practice eating sugar, lung cancer patients to develop better tolerance to smoking, or people with life threatening allergies to practice exposing themselves to more of the allergen.
What is clear is that there is enormous cultural, medical, economic and political resistance to the idea that this disease is anything other than a fiction; a creation of the patient’s imagination, a play for ‘secondary gain’, a feminine neurotic manifestation, or, the latest philosophical fad, a ‘cultural construct’.
Adhering to this form of dismissal is undoubtedly considered a great economic benefit by medical insurers and government agencies concerned with payment of disability benefits.
All that is necessary to maintain this stance is to assume that healthy, successful, happy individuals can become completely disabled within a few days, without having suffered any particular trauma, by a psychiatric condition. Ignore the evidence that these ‘lazy’ people struggle to keep up their normal activities when too ill to do so, until they become completely incapacitated. Ignore that fact that there is no cohort of patients, anywhere, who have actually recovered as a result of CBT/GET. Ignore the thousands of research papers indicating measurable physiological changes. Ignore the results of your own IOM report.
It also requires ignoring the possibility that all these people who are at best economically inactive and at worst very expensive in terms of medical insurance payments might, if the proper research was funded and an effective treatment found, start being contributing workers and tax payers again…which is what they themselves want.
As a money-saving exercise, i think that pretending that it is not a medical disease, offering treatments that make us worse, and denying funding for proper medical research is likely to have been a catastrophic failure. However you may like to pretend it is a ‘social construct’, and blame the patients, the fact is that this disease continues to be expensive both to the patients themselves, their medical insurers, and the state, in terms of lost taxes. ‘Social construct’ theories do not offer any solution to this situation, as forcing patients into extreme poverty doesn’t cure them, and only kills them slowly, in most cases.
You, and Collins, claim to be newly dedicated to the cause of research funding for ME/CFS. So you propose to offer an instructional session about ME/CFS to your agency, the ones that you are persuading to get interested in supporting ME/CFS research, presented by a man who will set out in persuasive detail the that this disease is a ‘social construct’, therefore doesn’t actually exist.
It seems that despite saying the opposite, you are working effectively to convince the audience that actually, medical research into ME/CFS is a complete waste of time…even a patently ridiculous waste of time. I suggest that if this move doesn’t effectively kill ay interest whatever in supporting medical research, you have Professor Sir Simon Wessely as your next speaker–according to a journalist who attended one of his talks to medical insurance representatives, his imitations of ME/CFS patients had them rolling in the aisles.
Yours very sincerely
Nancy Blake
Sent from my iPad
I do think that NINR sponsored this and they have a clique of psychiatric school folk who have been rounded up to work on Dr. Nath’s ME intra-mural study. This raises questions: why is a counter-factual clique being indulged at NINR? Why, for example, was Walitt only recently hired away from Georgetown?
However, at this point I feel I at least have used up enough energy on this. Our task ahead is to keep track of the Trump transition team and start working on early-stage proselytizing of likely candidates for big jobs at DHHS, NIH, CDC, etc. We should also be thinking about going where the money is — we should be sharing the HIV budget, of which at least 30% is spent on non-basic stuff anyway. DON’T STOP THINKING ABOUT TOMORROW.
I have found nurses to often be a strong advocate of the biopyschosocial mode of thought. I think this needs to be taken up with the nurses – Walitt.
It’s not appropriate that at a time when patients are being admitted to the intramural study have nurses being influenced by people like Shorter.
The patients attending the clinic depending on how ill they are may have a myriad of seemingly bizzare medical needs- food intolerances, noise/light/chemical intolerances.
The latest NIH response to the Shorter debacle is not an olive branch. It’s not even a half-assed apology. It’s an exercise in public relations, pure and simple – another attempt to manage patient advocates. They will say anything to shut us up, while continuing the 30 year policy of non-research.
As I have written many times before, the policy will not change until the people who are actually making policy are identified and subjected to public pressure and court action. I don’t see that happening any time soon.
Fortunately we have privately funded researchers like Ron Davis and associates who are not waiting for NIH. My birthday is in a few weeks; this year I’m going to give myself a birthday present and donate to OMF.
Oh, wow, what a letter by Nancy Blake. It spells out everything.
My concerns are that the future administration will cut medical research funding and that ME/CFS is at the bottom of the list of priorities. Also, that they’ll weaken Medicare and cut the Affordable Care Act.
We have to keep on advocating and thank Jennie and everyone else who keeps up the pressure. We are going to need all we can muster next year.