[Update 5/5/16: For context and background on Ed’s post below, please read my blog post, “Has the “Coyne of the Realm” been devalued?” It describes in detail some of Coyne’s abuse of patients in the ME community, including myself. The mistreatment seems to be ongoing, as he continues to call patients “assholes” and “nut cases” and who knows what else.]
By Edward Burmeister
I am taking the liberty of posting this entry on Jeannette’s blog.
Many of you know that I seldom become involved in ME advocacy. My wife, Jeannette, is typically capable of holding her own. She has been, health permitting, a relentless advocate for ME for several years and has been effective in holding government agencies and officials accountable when their actions or inaction have damaged the ME patient community, and in particular when they have not lived up to their legal responsibilities. It is true that she has strong opinions on how to conduct effective advocacy and states her position assertively, but I can assure you that she makes it a priority to focus on the issues and to stay away from personal ad hominem attacks on other individuals advocating for ME. On the rare occasion when she has made a mistake, she was quick to apologize and set the record straight. Far from being self-promoting, Jeannette has gone out of her way to support and give credit to other patient advocates for their efforts. When her health allows, Jeannette collaborates with other advocates, typically behind the scenes. Among other things, Jeannette’s advocacy efforts seem to have derailed the massive price increase for Ampligen that was scheduled for next month, which according to the Ampligen study coordinator is now not going into effect for the time being.
Jeannette has made sacrifices for the community that go above and beyond. Aside from traveling to Washington, DC on numerous occasions on her own dime, she has paid the travel expenses of other advocates for DC trips. She anonymously paid the Incline Village rent for another patient whom she barely knew, so that that patient could get Ampligen. Not only did she risk having to cover the $139,000 in attorneys’ fees from her FOIA lawsuit herself, she ended up paying about $60,000 in taxes on those fees. In addition, as the plaintiff, she also was not able to bill for the time she herself worked on the lawsuit, which would have totaled additional tens of thousands of dollars. There are many other ways Jeannette has helped patients and the community that few know about. She gives back as much as she can without bragging about her generosity. And while we are financially comfortable, for which we are very grateful (and because of which we would have never thought of asking the community to chip in, for the attorneys’ fees, for example), her financial investment in her own and others’ advocacy has been significant and affected us financially fairly dramatically. (After all, Jeannette is disabled like so many ME patients.) Yet, she has not once talked about that.
The recent incident starting with the Facebook posts of Dr. James Coyne on February 27, 2016, is so outside the realm of reasonable and civil behavior and has affected Jeannette’s health so directly and adversely as to render her physically unable to defend herself at the moment, that I simply cannot stand by and witness this without comment.
Her blog entry, “Has the “Coyne of the Realm” been devalued?” sets forth the facts. I will summarize these briefly, however. It is important to know that Jeannette had been a supporter of Coyne’s efforts on behalf of the ME community and has never stated, publicly or privately, anything that could possibly be viewed as attacking him in any way. She did thoroughly analyze the public interview of Brian Walitt of September 2015 concerning fibromyalgia when she found out that he was to be the lead clinical investigator of the proposed NIH intramural study. She posted a blog entry, “Brian Walitt’s Radical Bias: Disorders of Subjective Perception, ME/CFS as Normal Life Experience?” based on the Walitt interview, expressing her concerns regarding his participation in the NIH study given his stated views concerning fibromyalgia.
Then she tweeted the following to the head of NIH, Francis Collins, with a link to her blog post (22 retweets and 30 likes as of now):
“Not one bit embarrassed that Walitt works for you, hurts very sick patients? What an agency you run!”
Notice that neither Jeannette’s tweet nor her blog post contain any direct or indirect comments on, or criticisms of, Coyne nor would anyone reading these perceive any conceivable attack on Coyne. Coyne would not enter your mind at all. Her tweet was assertive, but completely within the acceptable and reasonable range for advocates who take issue with government actions. One might even consider the tweet reserved given the history of the neglect of ME by NIH. Also bear in mind that Jeannette had filed a FOIA request with NIH to obtain documents concerning the genesis of the IOM study on ME/CFS. She was met with unconscionable obstacles and obfuscations by NIH, requiring her to file a lawsuit, including misrepresentations under penalty of perjury by NIH officials. Only after an arduous legal battle did she obtain the documents to which she and the public were legally entitled. The NIH behavior was so inexcusable that the Judge in the case awarded all her attorneys’ fees (highly unprecedented), totaling $139,000, and specifically called out NIH for its unreasonable conduct in this case.
It is simply not tenable to maintain that her tweet was “abusive.” You may not agree with it or with her tactic of criticizing Walitt or the handling of the proposed study by NIH, but the tweet was absolutely fair game and within acceptable standards of reasonable advocacy. With this background, it was shocking to her, me and most of the community that Coyne stepped in and demanded, in effect, that the patient community condemn Jeannette’s tweet, insist on an apology from the community for the tweet and ostracize advocates like Jeannette, calling her a “sick crazy lawyer,” having a “history of being abusive towards reasonable informed Americans” and posting a “nasty and abusive tweet.” He demanded that the patient community step up and “stop the abusive crazies” or he would stop helping with attempting to obtain documents relating to the PACE trial. When many questioned him on this, he called them names (e.g., “delusional”) and told them to “fuck off.” All of this because Coyne disapproved of Jeannette’s reasonable approach to advocacy.
Please keep in mind that this is coming from a renowned Ph.D. in psychology with a large public following and a recent position of prominence in support of patients with ME.
Coyne is a newcomer to this community and has apparently developed a pattern of labeling long-term advocates with whom he disagrees as divisive and destructive and asking others to ostracize them for simply expressing any views that are inconsistent with his views or approach to advocacy.
I sincerely appreciate, as does Jeannette, the large outpouring of supportive comments from patients in the ME community, public and private. Unfortunately, she has been too sick to thank everybody individually, as she wanted to. As ugly as this has been, Jeannette tells me that a number of new alliances have been formed over this and for that, she’s grateful. We are both especially heartened by the fact that the majority in the community has a functioning moral compass.
Unfortunately, there are a few who have apparently harbored resentment against Jeannette and have taken this opportunity to add to the abuse from Coyne, calling her names, such as “textbook narcissist” with her following of “flying monkeys.” To those few people who thought it fit to pile on in the aftermath of Coyne’s revolting mistreatment of Jeannette by egregiously defaming Jeannette and spreading vile lies about her (some of which are urban legends revived from years ago) and engaging in other character assassination, maybe you want to check in with your conscience because your behavior shines a bright light on your value system and, quite frankly, it’s not flattering. The same goes for those hosting or “liking” such comments.
Jeannette is currently undergoing an intense five-days per week treatment regimen for a medical issue secondary to ME, on top of her infusions. Continuity is crucial for the efficacy of that treatment. That is now in jeopardy due to her decline as a result of Coyne’s verbal and emotional assault. No sick person should be forced to choose between protecting her health and defending her reputation.
It is alarming that some have supported, or at least condoned or downplayed, Coyne’s behavior. Some have suggested that Jeannette somehow brought this on herself, which is not only untrue, but also constitutes shameless and cruel victim blaming. Some have justified it under the greater good theory, in other words, we need Coyne’s advocacy for obtaining the PACE data, so we have to sacrifice a sick patient advocate who has labored for years at great personal cost on behalf of this community and tolerate her abuse by Coyne. Others are saying that they disagree with his language, but basically agree with his sentiment about quieting advocates who don’t toe the party line. I want to be very clear that the foul language, as unacceptable and revealing as it is, is not the main issue here. Had Coyne done what he did—calling sick patients “crazies,” resorting to defamation, trying to coerce a vulnerable patient population into an apology (when he is the one who should apologize) and into shunning advocates for no reason whatsoever—but done it in a more polite manner, it would still have been reprehensible. It’s the substance of what he did much more so than the style in which he did it that is so objectionable. The style does reflect, however, a disturbing aspect of his approach to advocacy. And let’s not forget that this was not just one comment. It was a sustained attack that encompassed many comments and no apology has been made. To those who have suggested that Jeannette back off on this and, in effect, suffer in silence in order that the ME community keep its focus, i.e., the taking down the PACE trial, I respond with two points. First, it was Coyne who launched the unjustified attacks on the community and key advocates. It is up to him to deescalate the situation by apologizing and toning down his rhetoric. Second, silence has facilitated Coyne’s attempt to shut down and ostracize other advocates—Suzy Chapman and Angela Kennedy and presumably others—without any repercussions for Coyne. Someone has to stand up to his bullying tactics. Otherwise, who will be next on the chopping block? Further, is it not possible that his extreme actions in this arena could backfire and give those who oppose his position on the PACE data ammunition to reject his demands?
We are assessing what steps we should take to bring accountability for the described actions against Jeannette, but mainly I wanted to let the community know how strongly I feel about this and how directly it has affected our family. I should add that I have served as the Managing Partner of the Bay Area offices of Baker & McKenzie LLP, the world’s largest law firm, and have never witnessed this type of behavior towards a professional in comparable circumstances, particularly by an individual who, by education and profession, should be compassionate and caring.
By now, Coyne has had plenty of time to issue an apology to the community and the advocates he specifically targeted, including Jeannette. He has not done so. Instead, he stood idly by as further attacks by others, clearly incited by his initial smear campaign against Jeannette, took place. It is clear that he is unrepentant.