Transition, TV Appearances and a third message from Dr. Lawrence Afrin:

Wednesday, July 26, 2017

“It has been brought to my attention that there has been much vilification of Dr. Dempsey’s recent brief appearance on live TV to try to help educate viewers regarding mast cell activation syndrome (MCAS).  Although the meaninglessness and sadful waste that is internet hysteria is widely recognized, I would nevertheless like to offer the following commentary, divided into two sections, the first offering some general observations about Dr. Dempsey’s efforts, and the second offering specific observations regarding some of Dr. Dempsey’s statements in the interview which I feel have been inappropriately criticized.

First, some general observations:

(1) First and foremost, Dr. Dempsey obviously made her appearance in an effort to help people who might be suffering MCAS but who have been unable to make progress due principally to their physicians’ lack of awareness of the disease. It has been Dr. Dempsey’s long experience, and my own long experience, and the long experience of every one of the few health care professionals around the world who have come to gain a good understanding of MCAS, that for many obvious reasons it most often is the case that it is the patient who first recognizes he/she might have MCAS.  Yes, educating physicians about MCAS is important, but if at present it most commonly is the case that it is the patient who first recognizes himself/herself to likely have MCAS at the root of his/her problems, then it obviously is even more important to educate patients than physicians.  An educated patient can then bring his/her suspicions to his/her physician, and though the first such physician, and perhaps the next and the next, may not be cooperative, the persistent patient likely will eventually find a physician willing to learn about this disease of which he/she previously had no awareness.  Thus, educating the lay public about the disease is important, and kudos are due to Dr. Dempsey for taking advantage, despite some understandable trepidation (see next paragraph), of this important educational opportunity.  Seldom do mast cell disease professionals have an opportunity to simultaneously educate a hundred thousand people about the disease.  Education of the public about this prevalent disease is too important to turn down opportunities like this regardless of the challenges they may pose.

(2) Furthermore, MCAS is a ridiculously complex disease, and it’s hard enough to provide a meaningful extent of education about this topic to a health care professional with just an hour-long lecture (I know; I give such lectures often and still often run over time), let alone trying to give a lecture to the lay public about it, let alone trying to educate the lay public in an unrehearsed, rapid-fire interview format, let alone trying to educate the lay public in a rapid-fire interview format in two minutes. And let’s not even talk about the pressure of being on TV – live TV – for one’s very first time, in a very foreign, disorienting environment, under bright lights, speaking about a very complex topic with an utter stranger never before met, all the while knowing the virtual impossibility of communicating much in the way of meaningful information in the format offered.  The way I see it, simply walking into that studio to do that interview was an almost unparalleled act of bravery on Dr. Dempsey’s part, clearly driven by an intense desire to educate and help people, and as a career-long educator myself, I give major props to that and call out anybody who sees anything to criticize about that.  Heck, those who know me know that I can’t complete a single spoken sentence about MCAS inside of two minutes, let alone conduct an entire interview about the topic in two minutes.  I am absolutely certain I would not have performed nearly as well as Dr. Dempsey did – I might well have not gotten out even a single coherent thought – and I cannot believe that any of those who have thrown stones at Dr. Dempsey for her performance could have done better – or should be rationally expecting any better given the setting and constraints of this educational opportunity.

(3) I have said it before, and I will say it again: what Dr. Dempsey and I are now just beginning to try to do is create an independent organization to advance care, research, and education regarding this disease. It is obvious we have not done this before, and I previously also pointed out there are no models for us to copy.  Furthermore, we obviously are human and thus obviously not perfect.  There will be opportunities to improve virtually everything we try to do, but everything we will do will constitute a good-faith try to advance care, research, or education regarding this disease.  Constructive, polite, and thoughtful suggestions will always be welcome; vilification of our good-faith efforts obviously will be unconstructive at best and counterproductive at worst.  Those who seek the betterment of MCAS (whether in themselves or others) and who are unappreciative of our own efforts would make better use of their time providing support for others’ efforts they feel are superior – or even leading their own efforts.

(4) Finally, to those who would like to better know the extent of Dr. Dempsey’s excellent understanding of MCAS which she easily expresses when permitted an appropriate duration and format to speak about this very complex topic, I encourage you to check out the recent two-part podcast interview of her about MCAS at http://drhoffman.com/podcast/histamine-intolerance-part-1/ and http://drhoffman.com/podcast/histamine-intolerance-part-2/. It cannot be stated too often: this is an extremely complex disease.  If it were simpler, it would have been “figured out” long ago and it would be routinely taught in training and every doctor would know how to recognize, diagnose, and treat it.  I understand that complex topics do not “play well” in the modern sound-bite era and that any MCAS-related production shown at Short Attention Span Theater will never be well reviewed, but that doesn’t change the fact that it’s a serious disease which is present in a great many people and is preventing many from having more comfortable and productive lives, and thus educational efforts on all available fronts are important.  Discussion of a complex topic inescapably requires much time and careful attention and thought, and thus when there’s a need or opportunity to converse about such a topic in an uncomfortably short period of time, and without rehearsal at that, the reasonable listener should reasonably expect any speaker to not provide complete or perfect discourse about the topic.  Respectful requests for clarifications, and thoughtful proposals for debate, after the event are always invited and will always get prompt, thoughtful, and respectful responses from Dr. Dempsey and myself.  Less courteous comments simply are unproductive, merit no consideration, and beg the question of why such a commenter would not choose to spend his/her time more productively.

Secondly, some more specific observations:

(1) As is grossly evident from the prior interviews Dr. Dempsey has given about MCAS, she most certainly does not think MCAS is always secondary to Lyme disease. She has the same perspective as I do that MCAS likely is usually (i.e, in most, though probably not all, patients) of acquired mutational origin (as suggested by the repeated datasets published by the team in Bonn, but which still require independent confirmation).  At the same time, it has long been clear that any infection – which most certainly includes Lyme (Borrelia burgdorferi) infection – has potential to worsen both normal and pathologic mast cell activation.  Furthermore, New York is virtually at the epicenter of the current epidemic of true Lyme disease, and the overlap of symptoms between chronic Lyme disease and MCAS is obvious, so even though most MCAS patients don’t have Lyme disease, the potential intersections between Lyme disease and MCAS are of relevance and interest to the New York population to which the interview was broadcast, and thus it was reasonable to discuss such intersections – inasmuch as was possible in a two-minute interview.

(2) It is entirely true that some patients really can virtually completely control their MCAS just by eliminating a handful of triggers, whether food or otherwise. In fact, especially when one views most allergy as, in truth, a form of inappropriate mast cell activation, I suspect that the great majority of people who suffer inappropriate mast cell activation virtually completely control their disease just by practicing trigger avoidance.  Most people who are allergic to a particular allergen simply practice avoidance of that allergen and do fine.

(3) In some MCAS patients (likely a small minority, I suspect), MCAS may be more due to mast-cell-activating autoimmunity than mutation-driven misbehavior. At present, we have no ability to define which portion of the inappropriate mast cell activation in any given MCAS patient is due to mutation-driven misbehavior vs. autoimmunity.  As with virtually every other aspect of MCAS, much careful study of this matter is needed.

(4) The intersection between autoimmunity and MCAS is frightfully complex, and it should surprise no one that broad statements about this matter, which are the only statements possible in a two-minute interview, will be imperfect and cannot even begin to convey the true complexity here. ANA and a great many other antibodies can be seen in MCAS patients, though determining the clinical significance of any antibody in the individual MCAS patient is quite the nuanced matter – and there certainly isn’t any opportunity for nuance in a two-minute interview.

(5) Dr. Dempsey is precisely correct that it indeed is quite uncommon for MCAS to become “disabling” or to be “severe” (let alone “fatal”). Again, as alluded above, it is grossly evident that the vast majority of the great many people who have inappropriate mast cell activation have the disease to such a modest extent that they don’t need to see any health care professionals at all; they just take over-the-counter medications (e.g., antihistamines or NSAIDs or proton pump inhibitors) as needed.  Those who are somewhat more significantly afflicted see an allergist or an internist or some other specialist as appropriate for whatever the manifestations might be of their particular variant of MCAS – and most of those patients gain some measure of improvement from getting diagnosed with, and treated for, some “superficial” diagnosis under which there’s a brewing, but usually unrecognized, MCAS.  There are always exceptions, but in general, only the worst of the true MCAS population, suffering broad and chronic, significantly life-altering problems from the disease, need get diagnosed/labeled with “MCAS” and get specifically treated for it, and only a small subpopulation of that population labeled with “MCAS” is effectively disabled, let alone killed, by the disease.

(6) Dr. Dempsey and I know full well that, despite the now readily apparent prevalence of MCAD/MCAS, the vast majority of the world’s health care professionals have not yet even heard of it. Bit by bit, educational efforts of all sorts will rectify this.  Our new Institute already has a number of such efforts – some patient-oriented, some professional-oriented – lined up.  We are trying.  How are the discourteous commenters contributing?

Would I have answered the interviewer’s questions differently if I had done that interview?  Yes: I would have performed much worse – and I am certain that such a performance, born out of the fact that I am a doctor and not a performer, would not even begin to reflect my true knowledge and doctoring abilities in this area.  Criticizing a doctor for incompletely, imperfectly describing an extraordinarily complex topic in a two-minute interview aimed at a lay audience makes as much sense as it might have made criticizing George Clooney for failure to conduct CPR properly on somebody who dropped dead on his ER set (yes, a dated reference, but the point is made).  Constructively criticizing an actor/performer for poor acting/performing is reasonable, and constructively criticizing me if I’ve been doctoring poorly is likewise reasonable – but lambasting a doctor for poor performing is no more sensible or productive than lambasting a performer for poor doctoring.

But we have learned from this, and we will keep learning from all of our efforts to advance care, research, and education in this area.  Again, nobody has done before what we are trying to do, and I would urge those who are quick to denigrate to instead consider the greater benefit to themselves and the rest of the community which might come from your trying to constructively assist our efforts or even from your trying to lead whatever other productive ways forward you think are best.  How much good might the world gain if even 1% of all the vitriol so startlingly discourteously spewed on-line were re-channeled in more constructive, positive, courteous fashions?

To the great majority of readers who I suspect are quite reasonable, thoughtful, and respectful people, please allow me to close by thanking you for your ongoing support and understanding of both my efforts and Dr. Dempsey’s efforts.  And, though I am not expecting to see much in this regard, I will finish by noting that the apologies which absolutely are due Dr. Dempsey would be welcome.”