[Please also see the follow-up post by my husband, Ed Burmeister, “Standing Up to Coyne and Against Unfair Treatment of ME Advocates.”]
A recent addition to the ME advocacy community, Dr. James Coyne, has been celebrated as a savior of ME patients almost immediately since he joined the conversation just a few months ago by attacking the PACE trial. He has been a very welcome ally. So, it was rather bizarre when Coyne gave the ME community an aggressive ultimatum yesterday, in an apparent attempt to silence patients whom he disagrees with. In this particular case, it was my opinion regarding Walitt’s appointment as lead clinical investigator for the NIH study he took exception with. According to the ultimatum, patients can either “do something about [me]” or he “is out of here.” He posted the following about a tweet of mine addressed to NIH Director Dr. Francis Collins in two Facebook groups, “Invest in ME” and “The ME Alliance:”
He then proceeded to call me a “sick crazy lawyer,” tell another patient to “fuck off,” label another as “delusional,” tell the community that they can “fuck themselves” and throw around f-bombs like they are the new “lol.” He also painted himself as the victim of “abusive crazies,” i.e., dissenting ME patients.
Yet, according to Coyne, I am the trolling and harassing one!
I quote from the above:
I will demonize a crazy sick lawyer
Apology, my ass
you are delusional
be my fucking guest
Coyne is threatening an “all out war” against the community:
Here is a person who, by his own account, is healthy and obviously extremely high functioning judging by his prolific writing, tweeting, posting, etc.
He, the healthy one, threatens a marginalized, abused, neglected and victimized patient population that has been desperate for his help. Yet, according to Coyne, dissenting patients are the crazies!
I have never seen a member of the ME community that enraged and out of control. Things got so surreal that a number of people wondered whether Coyne’s Facebook account had been hacked. But sadly his Facebook behavior of yesterday is consistent with his recent Twitter conduct.
The irony of the following statement by Coyne is likely lost on nobody.
Illness certainly does not justify bad behavior in public. Nothing does, really. Nevertheless, we witnessed Coyne’s behavior yesterday.
Once again, the community is facing somebody who is asking us to use our inside voices, never mind that hasn’t worked in 30 years. All the while, Coyne is shouting profanities at the top of his lungs, not at the perpetrators, the US government, but at the victims, vulnerable patients who have every right to voice their opinions. Coyne is free to disagree with them, in a civil manner. It’s called discourse. What he exhibited yesterday, however, is called verbal abuse.
Let me assure you that there has not been any bad blood between Coyne and me in the past. Like many other patients, I have been immensely grateful for Coyne’s commitment to fighting PACE and the work he has done on that front. He and I have never had an interaction of any kind other than my liking and sharing a few of his blog and Facebook posts as well as some of his tweets, typically related to PACE. For all I know, Coyne does not know me, or of me or my past advocacy work, although bizarrely, he Facebook-friended my husband (who is active in ME advocacy only very sporadically) a few months ago.
So, despite the lack of any history here, Coyne proceeded the way he did without the courtesy or the courage to first engage me privately or to at least tag me in his public attacks. This was clearly a calculated hit on a reputable advocate that he felt he could get away with.
According to Coyne, my tweets are not only “quite off the wall” (seriously?), but I am also “quite closed to being corrected.”
How could he possibly know that? As I said, we haven’t had a single exchange, no direct contact whatsoever.
Also note that he posted in two UK groups, possibly because the UK community is not as familiar with my work as US advocates are and I’d likely be an easier target and get less support there, although it hasn’t exactly panned out that way for Coyne. In fact, most patients who commented, regardless of where they are based, are bewildered by Coyne’s tantrum and don’t appreciate his harsh and irrational ultimatum. It seems Coyne miscalculated and the community called his bluff. But still, if one wanted to pit the UK community against the US community, this would be a pretty good way to go about it.
The more patients pushed back, the more Coyne kept repeating that he will just abandon us, unless an apology from the community is forthcoming:
As a matter of background, NIH recently announced an intramural study on post-infectious ME/CFS (their phrase, not mine) as well as the agency’s appointment of Dr. Brian Walitt as the lead clinical investigator. I wrote in detail about a disturbing interview that Walitt gave about fibromyalgia. If you haven’t seen the interview, it’s a must-watch. It will make the hair on your neck stand up. According to Walitt, fibromyalgia is not a disease or illness; instead it is merely a normal way that some people are meant to experience life. Walitt considers a lack of treatment not harmful to patients. Furthermore, in his prior work, Walitt labeled CFS together with fibromyalgia as somatoform and both as disorders of subjective perception, much like the Wessely School. One thing that I fear might get lost in all this Coyne profanity is that he seems to deem Walitt an unproblematic choice for the NIH study. It really does make one wonder where his allegiance truly lies.
Coyne seems to have a huge blind spot when it comes to US ME politics. UK bad, US good:
It’s outside the scope of this blog post to discuss why Coyne’s view of the situations in the UK vs. the US is less than fully informed and much too simplistic. But one only has to look at the CDC website and its continuing medical education material to see that the agency is recommending graded-exercise therapy and cognitive-behavioral therapy, based in part at least on the PACE trial.
I stand unequivocally behind my tweet to Collins. Claptrap like that of Walitt has no place at NIH. Taxpayer money is wasted on Walitt’s salary while quality research is not getting funded. My opinion and that of the vast majority of US patients (and those UK and other patients) who have been closely following the details around the NIH study happens to be that Walitt is an appalling choice for the NIH study. It is an entirely reasonable position—and I’d argue the only reasonable position—that Walitt should not be anywhere near the study. Coyne feels different. In fact, he supports Cort Johnson who supports Walitt.
Do I think Cort’s pro-Walitt piece is indefensible because it downplays the dangers to the community of Walitt’s involvement? Sure. Have I called Cort names because of it? Of course not, because of that whole civilized grown-up thing adults typically do. My tweet was more than appropriate in light of the history of the US health agencies with this disease and in light of NIH’s choosing of Walitt. How can Coyne possibly be the arbiter of what is acceptable in Twitterland given his generous use of profanities?
It’s almost like Coyne is being territorial, the territory being forcefully-stated opinions. They are ok for him—definitely for him—but most certainly not for others, unless they support him; then they are fine, of course.
Can we take a step back and have a little reality check here? Twitter is a place for conversation, a venue to express opinions. Coyne, more than most people you will find on Twitter, expresses strong opinions on a regular basis, which makes this all even more surreal. He hasn’t thought of an attack he doesn’t like to unleash. He is not one to pull many punches. A few months ago, he called a female journalist’s tweet a “bitch comment,” something I naively made excuses for at the time. Let’s face it, we all placed a lot of hope in him and were willing to give him the benefit of the doubt. We were eager to overlook this lapse in judgment that offered a first glimpse of what was to come.
Some of you know that I grew up in East Germany. I am all too familiar with intimidation tactics designed to silence people. Once you’ve experienced the Stasi, you don’t scare easily and you also recognize bullying the moment you see it. Coyne is asking the community to apologize for a tweet—a reasonable one at that—by one person under threat of withdrawing his support for the entire community.
That is outlandish. It is aimed at stifling discourse about issues that are crucial to patients just because certain opinions don’t fit his narrative. Obviously, the entire community is not responsible for what a single advocate says. So, what Coyne is really trying to do is not get an apology—from me or the community—but to get the community to rein me in, just like Dr Nancy Lee, DFO of CFSAC, has unsuccessfully tried before.
Aside from David Tuller, we haven’t had anybody from outside the community stand up for us as forcefully as Coyne. We desperately need the help of outsiders. Many believed he would be the one freeing us from our shackles. Coyne, of course, knows that and is playing on the fears and hopes of patients many of whom have been distraught about Coyne’s behavior and are begging him to stay. He is not budging. Extreme events like this are physically harmful to ME patients. They can cause major crashes and a long-term decline. Either Coyne has not learned even that much about our disease in the last few months or patients are just collateral damage in his quest for complete control.
Coyne seems to think that Collins’ position somehow warrants that he be treated with kid gloves. The opposite is true. Collins is a public persona, a top US health official who needs to be held to the highest standard for the sake of taxpayers and gravely ill patients. His agency together with CDC and other HHS component agencies has been responsible for the abuse and neglect of ME patients. NIH has recently designed a study on ME that reveals the intent to rebrand our disease as a psychosomatic one. And yet, Coyne demands that patients censor and shun other patients for expressing their objection to the study in ways that are not Coyne-approved.
Collins is the head of the world’s largest and most powerful government agency sponsoring biomedical research, but Coyne is acting as though Collins is a delicate flower.
Really? One tweet defines the community’s relationship with NIH? Preposterous. But let’s just say, for argument’s sake, Coyne is right. Why is that a problem? Almost all patients and advocates agree on Walitt. Does Coyne want to gag all of them? Maybe he is hoping that making an example of me will teach others not to have an opinion that differs from his. After all, his attacking the disabled has a devastating effect on the targeted patients’ health and who would want to risk being next? Where will he stop? Or will he? When is the earth scorched enough for him?
But seriously, if agency heads cannot take a bit of heat—especially when they and their predecessors are responsible for a tremendous amount of abuse and neglect of the vulnerable—maybe their appointment was not the best choice. I wonder how Collins feels about being painted by Coyne as somebody who cannot stomach a justified tweet.
I see no need to defend my record. It’s a credibility problem for Coyne, not for me, that he didn’t do his homework. But let me say just this. Sure, I am not a feel-good, kumbaya advocate. My philosophy as an advocate is to hold the Feds’ feet to the fire and exert pressure because playing nice hasn’t worked and people are running out of time. That is how I have successfully called out numerous HHS & Co. legal violations. And that is how I won a federal FOIA lawsuit against NIH and HHS recovering all my attorney’s fees, something practically unheard of in a FOIA case, especially given the amount of legal fees—over $139,000—NIH and HHS had caused me with their recalcitrant and obfuscating behavior. The fact that the Court awarded attorneys’ fees in full is a clear indication of just how unreasonable NIH and HHS acted in that litigation. That conduct included NIH and HHS misrepresenting the facts under penalty of perjury, misstating the law, filing a frivolous summary-judgment motion, disobeying the Court’s order, wrongfully accusing me of lying, everything to avoid complying with the law at the expense of taxpayer money. HHS and NIH directly caused my health to dramatically deteriorate as a result of their deplorable conduct. They acted like bullies towards a disabled ME patient. I have not yet talked very much about the details of the lawsuit, but I am working on it and I can guarantee that patients will be appalled. The Feds used every dirty trick in the book and because of their arrogance, they didn’t in their wildest dreams imagine I would win. Yet, win I did. But hey, according to Coyne, I am just a crazy lawyer.
… the government’s conduct throughout its dispute with Ms. Burmeister was unreasonable. [emphasis added]
Why is Coyne not outraged by how HHS & Co. have violated the law and treated me in that lawsuit? Why does he not take issue with NIH’s decades-long neglect of the community or its upcoming study whose design is beyond redemption? And please spare me the it’s-in-the-past speech. Not only is it unrealistic to think that an agency changes over night, but my lawsuit came to a close just a few months before Collins’ promise of a new era. But then again, Coyne doesn’t “give a fuck” and has his own grievances with NIH:
Is the following possibly why Coyne blew a gasket yesterday?
I have no doubt that he spent many hours on the PACE project, with the help of many patients. And yet, there is just no way he is as invested as any of us patients are. For Coyne, this is intellectual stimulation that provides adoration from many as well as possibly academic glory. For us, this is nothing less than our lives on the lines, vastly different stakes.
I am by no means the first member of the community to be on the receiving end of the rage that seems to have overtaken Coyne recently:
Earlier this week, I noticed his Twitter exchange between Coyne and Rosie Cox whose intelligent and spot-on commentary is a valuable asset to the community:
Patronize and micromanage much?
Angela Kennedy has been another Coyne victim. She was entirely civil in her Twitter exchange with Coyne a few days ago, asking him about his tweets linking to Cort’s blog post about the NIH study (reproduced above):
Instead of answering her question, he kept asking her if she had read Cort’s blog post. And then he sent her the following direct messages:
Wow! The Twitter police in action. In the world of ME advocacy where social media is almost everything, that kind of abusive overreach—seeking to interfere with the online presence of an advocate—can completely sideline somebody. That kind of disproportionate reaction is just vicious. It’s revealing and it’s inexcusable.
I seem to have missed the incident that led to Suzy Chapman—an impeccably accurate and prolific advocate—being blocked by Coyne on Twitter, but I am sensing a trend. I keep thinking how bizarre all of this is. I do feel a bit like I am back in high school and one of the cool (translation: mean) kids is telling others they can’t sit at the cool-kids’ table.
I wonder what Rosie, Angela, Suzy and I—all us *women*—have in common.
Coyne claims that Angela and I have a history of being more abusive with more reasonable people like Julie Rehmeyer.
Angela can speak, and has spoken, for herself and Julie has backed her up:
Coyne’s assertion is plain and simply an untruth as to myself as well. I recently pleaded with Julie to reconsider her plan of interviewing Walitt because I believe that it would give Walitt an opportunity to spin the absurd statements he made in the interview and it’s better to let the interview speak for itself. Julie and I disagreed on strategy. It’s advocacy, for Pete’s sake; there is going to be disagreement. We had a polite Twitter exchange about it. Julie tweeted to me twice that she understood where I am coming from. I am unable to find her second tweet in which she only said, “I hear you,” but here is the other one:
As you can see, Coyne’s description of that exchange as my abusing or attacking Julie is a blatant mischaracterization of what happened.
It has been reported to me that Coyne had a private-message exchange on Facebook on the evening of February 27th with a patient who had been providing him, for months, with amounts of quite rare documentation about UK ME-related matters, including the Lightning Process and the SMILE Trial. The patient relayed to me that, on a number of occasions, the patient urgently messaged Coyne to correct his factually incorrect online statements.
The patient notes that all the exchanges with Coyne up until that time had been perfectly pleasant and straightforward, concentrating on the documents. But on that evening, the messages from Coyne became suddenly abusive.
The patient has graciously given me permission to reproduce Coyne’s verbally abusive private Facebook messages. The first FB PM from Coyne to the patient in that thread appeared to be some kind of ultimatum relating to my Tweet to Francis Collins. The patient feels that Coyne took his anger out on her because he didn’t have the courage to confront me, because both my husband and I and many of our friends are attorneys. Here are some of the Facebook PM exchanges:
Coyne: “This is absolutely unacceptable trolling and harassing of the head of NIH. If something is not done about it, I am withdrawing form the struggle.” [Reproduced Jeanette’s Tweet to Francis Collins]
Patient “Err? I don’t control what Jeanette Burmeister Tweets, or who to. As far as I can see there was one tweet. She is a lawyer who won an FOI case (below)”
[The patient gave links to my blog posts on the NIH and HHS FOIA case.]
Coyne: “I do, when it is to the Head of NIH and I am prepared to tell the patient community collectively to fuck off.”
Patient: “Charming. I have always been civil to you James. As you can see there is definite history between the NIH and Jeanette.”
Coyne: “I don’t give a fuck. If the community cannot do better, they can fuck themselves.”
Patient: “I want you to stop sending me such messages, and to stop swearing in private messages to me. Go take your anger out elsewhere. I don’t tweet. I am too sick to take on another online system. Too many of us are very lucky to be still alive. If my doctors and fellow citizens had had their way in the years of very severe ME, I would be six feet under twice over.”
Patient: “Err – have you sent such messages with swearing to Jeanette Burmeister? Or just to me?
After all – its not as though Jeanette has told Francis Collins what you have just told me – ie if he can’t do better he can fuck himself.
She has been more civil to Francis Collins than you are being to me.”
Coyne: “fuck off, you are wasting my time.”
Patient: “Apologise James. Your communications to me tonight are are appalling and frankly abusive. Have you messaged anyone else with such abusive statements? Or is it just me, who has never been rude or offensive to you.”
Coyne: “I really don’t care what the community thinks, they have totally undermine all my hard work.”
Patient: “Don’t message me again. You have been rude and abusive in these messages beyond the call of anything.
I don’t care how angry you are. You don’t speak to me that way. You are out of order taking out your anger on me about a tweet by Jeanette Burmeister.
I ask you again, have you sent similar messages to Jeanette as well, or anyone else in the ME community tonight – or is it just me you feel free to be verbally abusive to tonight ?”
Coyne: “Let’s not talk to each other no, I didn’t write to her. But you don’t get what I’m saying”
Patient: “So, you decided to take your anger out on me. But you didn’t have the guts to write the same messages to Jeanette, who has a high profile blog and is a lawyer.
I got exactly what you were saying James. you were repeating fuck off in private messages to me.”
I wonder if other patients have received similar messages from him.
It is clear from this exchange that Coyne is seeking to completely control the community around the NIH study.
The problem with relatively new, self-appointed prophets is they don’t have a track record yet, haven’t revealed their agenda yet, have not proven themselves yet. Those things take a while, happen only over time. When people place all their hope in them, and I will admit I did it myself in this case, they risk getting annihilated on a whim, just like Coyne is threatening to do to our community now.
As an outsider who is new to ME advocacy, Coyne can’t be expected to know much about the history of the disease or its politics other than that of PACE. As an academic, however, he ought to know that it is crucial to be aware of one’s limited knowledge. His distressing hissy fit was so gratuitous and really quite unfathomable.
Is Coyne’s outrage even real? I mean is it really possible that somebody would get that angry about one low-to-medium-heat tweet? Or is he looking for an excuse to bail out on us? In other words, does he need a scapegoat to save face because he feels defeated in his fight against PACE? Advocacy gets frustrating. It is not for the faint of heart. I don’t know of many advocates who haven’t considered bowing out. I must say though that this kind of exit has never entered my mind. Or is this a case of uncontrollable rage against an easy target, sick patients who fear his threatened abandonment? It’s clear that we are witnessing control issues here. But does misogyny play a role? Those were all questions that the community has been asking since yesterday. Only Coyne knows the answers and I don’t want to speculate about the source of the ugliness of it all because I believe it will all become clear in short order.
Notice how Coyne set up the “discussion” in a way that if he does drop us as a community, it will look like it’s not due to his frustration over his lack of success with PACE. Rather, he framed it to be my fault or the community’s failure to teach me and advocates like me a lesson. I certainly don’t want to discourage Coyne in his fight against PACE. After all, many sick people have put a lot of their precious health into helping him help us and we urgently do need help. But should he choose to throw in the towel, that is on him entirely and nobody else. I will not be bullied into taking responsibility for his irrational actions—holding the community hostage over a tweet he dislikes—especially not after the indefensible abuse I have already had to take from him.
I really didn’t want to have to write this. But I take my reputation and my health very seriously. Needless to say, this incident has had a major impact on my health and is likely going to interrupt my desperately-needed treatments. I have been quite sick in the last six months and am just now coming out of a severe crash during which, at some point, I had to make an emergency will. Coyne’s behavior is making the community look bad. He’s holding everybody hostage demanding that the community condone his repeated abuse of, and aggression toward, patients in exchange for his staying engaged with PACE. I did not set it up that way. That was all Coyne. If he is willing to deescalate, I will be more than happy to listen.
I consider his vilifying attacks on, and lies about, me personal harassment and worse and plan on taking appropriate steps should they continue. His ultimatum to the community shows a degree of aggression that is unprecedented and highly alarming. Coyne called disabled people “crazies,” is attempting to bully patients into silence, is throwing his weight around with complete and vicious disregard for the wellbeing of seriously ill patients and the fact that his preposterous outburst is making them sicker. There is no room for this behavior in our community. How is somebody like that going to represent the ME community in the outside world? Is he going to walk around telling people who disagree with him to bleep off? Will that be held against the community?
So, yes, an apology is in order indeed—from Coyne to the community and me and everybody else he has abused and attacked.