Has the “Coyne of the Realm” been devalued?

[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:

fuck yourself

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.

Quoting from the Court’s attorneys’ fees order:

… 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.

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76 Responses to Has the “Coyne of the Realm” been devalued?

  1. Don'tTypeDrunk says:

    Reading the exchange with the Patient, my alcohol radar is beeping.
    The sudden change of tone/personality reeks of someone drunk-typing.
    In no way an excuse, merely an observation.

    • Agreed says:

      100% what I thought too! particularly the repetitive nature of all the f-bombing. Very much reminded me of my past drunken TUIs (typing under the influence) in the days, yknow, when I could leave my bed…
      As Jeanette points out; the stakes are higher for us. He really should have thought twice before thrashing on his keyboard. It’s our health on the line..

    • Deborah L Sherman in KCMO says:

      makes perfect sense

  2. Dave Olson says:

    I have considered an apology to Coyne, it would go something like this: “Golly James, I have been reading all your venomous remarks and personal attacks, and I must, per your request,apologize to you…I am truly sorry I believed in you, and what you were doing..I am not really sure now I know what your agenda really is, you will not be missed..”

  3. I’m speechless. I can’t believe what I’m reading. Perhaps Coyne is off his medications?

    Jeannette, I thank you from the bottom of my heart and I stand behind you 100%.

    • Indeed. That was exactly my reaction. Am quite stunned. I turn 69 this week and find it difficult to believe that professionals still speak to us in this fashion. After 23 years of ever-increasing illness, I cannot but also thank Jeannette. Am too ill now to fight. When at Duke Medical Center for 15 years (on staff), I experienced abuse that no human being should endure. Returning to Boston, MA area over 4 years ago, am deeply disappointed by lack of care here too.

      Am so tired of medical professionals’ precious egos. I doubt most would survive a week our our lives. Having worked with Gulf War vets years ago, am sure they would concur with us.

      My only way of fighting back in my condition was to drag my body to the polls and vote today.

      Many thanks to Jeannette. “Summary judgement” is something with which all too familiar. The guilty corporation that caused the initial severe damage to my immune system has never been punished. I had a lousy lawyer. Wish I had known someone of Jeannette’s character and caliber.

      Blessings to all.

  4. Well reasoned response Jeannette. I know you are not well, so this article must have been written at great cost. ‘Misogynist’? Could be, though I note most of the toughest advocates are female, so he could hardly miss.

    Coyne’s NIH-centric bleatings are paradoxical to history and to his assessment of the UK situation; they are perplexing, and in my view are dangerously misplaced, tho they do mirror the views of some patient factions. Sadly his Tourette’s-like behavior over the last week undermines any credible arguments he may have.

    As you mentioned, one of the bright notes to come out of this was the supportive response to your work from hundreds of posters on the charity group pages. I hope this goes some way to helping you move past this nasty business. I hope we hear more from you soon.

  5. wildaisyfl says:

    You are right! An apology from Coyne is owed to the entire community of ME patients and an iindividual apology to you and each of his other targeted patients. I believe Coyne is attempting to drive a wedge between US ME patients and UK patients; I hope he will not succeed because that would hurt patients in both countries. Thank you for your unending work on behalf of ME patients everywhere. Of course I support you completely.

    Patricia Carter

  6. Carrie says:

    Verbal abuse, harassment, threats, intimidation, an ultimatum–over a tweet? Really, Dr. Coyne?

    I suggest another way to deal with tweets you dislike is simply to scroll past them.

    Jeannette is right, patients are running out of time. We are literally fighting for our lives. The stakes are high, and your distressing, energy-consuming distraction, to put it kindly, is unwarranted and disruptive.

    Many long-term ME patients have learned the hard way that “going along to get along” in exchange for that mythical seat at the table is not productive. In fact, we US taxpayers have every right to share our views with Francis Collins, and I believe he has the tools to handle them. Moreover, I do not believe the director of NIH needs you to run interference for him.

    You are entitled to your opinion, Dr. Coyne, and so is each and every patient. Most patients have already been so abused by medical, legal and government systems, I think you’ll find few easily intimidated enough to acquiesce to your bullying.

    I, too, stand behind Jeannette 100%.

  7. To be honest, one of the biggest concerns I have had with both Coyne and Tuller’s intervention over PACE is what they’ve actually left out of critiquing (including important issues around the cohort selection), work on which I have undertaken for years. I have been (gently) on twitter trying to get them to get that back on the radar. I remain frustrated and dismayed that these issues that I’ve consistently highlighted have been airbrushed out of the PACE critique narrative, because they are pretty vital. Coyne’s reaction to me in the circumstances is therefore rather odd.

  8. Sally says:

    I witnessed this happen on Facebook, and having met James Coyne in person during the #PACEni events in Belfast, I have to say I am gutted by what has happened. I did not see this coming.

    My reply to James on FB:
    “I am confused James. If you want to fight this battle for sound science, then the actions of individual advocates should not be relevant. If you want to leave the fray, please don’t lay the blame on patients with whom you disagree.”

    I was not the only voice questioning his post. The thread then deteriorated into the string of profanities that Jeannette has recorded above.

    Jeannette I am so sorry this happened to you, I cannot see how that tweet merited the wrath he inflicted on you and the whole patient community as a result. I can only imagine how badly the stress of this must be on your delicate health.

    That James turned on us all, and you in particular, is beyond what I can tolerate.

  9. AllHeart says:

    In and of itself, for someone who alleges to have worked in the psychological health field (I don’t know anything about him beyond his work on PACE here in the UK and having read one blog of his in which he exhibits a strange turn of phrase) to use the word ‘crazies’ speaks volumes about his level of respect for patient communities. It is embarrassingly unprofessional. Is he unstable, or has something truly weird happened- like him being paid off for bowing out?? The mind boggles. Wishing you calm and emotional distance from this turbulent incident. Anyone with rational mind can see from the evidence that what Mr Coyne does next is on no account a result of your advocacy.
    To be clear, I’ve never encountered your work either, I’m just a UK patient who follows research when able. Very dismayed for patients here who seem to have put massive work into supporting Coyne’s crusade, feeling very concerned for all of their wellbeing and for the credibility of the PACE critique now.

    • Lyn says:

      The critique was Tuller’s and remains valid. James is not the only one advocating for retraction of Pace and independent scrutiny…..luckily.

  10. Utting Wolff says:

    Reblogged this on Utting-Wolff Spouts and commented:
    We have re-blogged Professor Coyne’s blog posts on here before, as we were more than delighted about and deeply grateful for his dedication to get the PACE trial data released, and we are hoping that he will not abandon his quest to do so. Open data is key to evolving science and constructive debate within the scientific community and among wider audiences, it strengthens our societies and generates better science as more pertinent questions will be asked once data is available for re-analyses and open debate. If Professor Coyne is as outraged as ever by the PACE trial because the shoddy work warrants it, he should, and will, stay on course. It is a scandal that no one in the UK of Professor Coyne’s status has stepped up to demand the release, so it is of course brilliant of Professor Coyne to have taken on the UK establishment and it is about time the unscientific shambles was thoroughly exposed and dismissed so that we can look forward to improved guidelines (NICE), etc. If Professor Coyne – and all the other distinguished scientists who have submitted a FOI request – succeed in obtaining the data, it will not only be cause for celebration for ME sufferers, should the data lead to the retraction of PACE, but it will also be a feather in the hat for Professor Coyne.

    However, in patient communities bullying techniques and silencing of people with differing opinions is detrimental on so many levels. It is terribly unfortunate that Professor Coyne has resorted to bullying a whole community of ME sufferers. What he did was wrong. Jeannette, on the other hand, has not bullied anyone (as some will have us believe), neither has she been a destructive force other than perhaps in the opinion of a few who prefer a more moderate, quiet or diplomatic approach to advocacy. No one should be bullied into thinking she maybe, possibly, perhaps is, just because Professor Coyne portrays himself as the injured party. The only destruction we have witnessed was initiated by Professor Coyne when he distorted a tweet out of all proportion in two Facebook groups populated by entirely innocent, some of them very ill, people. It was shocking and I feel for all those who were active on Facebook at that moment (several hours) in time. As for the tweet that he claims has incited his anger (the tweet was several days old by the time he had his outburst) I have seen him post much worse on Twitter. I am no fan of Ben Goldacre as regards his opinion on ME and the PACE trial, but a tweet by Professor Coyne to Goldacre in which the former called the latter ‘an asshole’ made me drop my jaw in disbelief.

    It is my informed opinion that the community would be much worse off if it were not for the impressive body of work Jeannette has produced over the years. People may disagree with aspects Jeannette’s work (I’d genuinely like to know which ones and why), choice of focus or personal expression. But it is not she who is the problem when Professor Coyne demands we give him our undivided attention ‘or else’, and when some comply because they are fearful of becoming the next target for his rage, or worse, thrown to the wolves by him. There is no need to side with him by accepting, condoning or even defending his extremely bad behaviour out of a fear that our chances of getting the PACE trial data released will be kyboshed. Metaphors have been thrown around about winning the war, never mind individual battles, but that is a horrible thing to say to decent people who have been at the receiving end of unprovoked rage from Professor Coyne.

    The PACE trial data must be released and if Professor Coyne is the passionate, dedicated seeker of scientific truth that we think he is, he will do anything in his power towards reaching this objective. He would most definitely not be distracted by a tweet. Such a threat is nonsensical and I wish more people, including Professor Coyne, would see that.

    Claudia Gillberg for Utting-Wolff Spouts

  11. gregcrowhurst says:

    I am so sorry Jeannette for the unimaginable impact this must be having on you. Even though we have played no role in this, Linda, my wife is devastated, totally confused : and very, very
    angry !!!

    WTF we just keep asking.

    Nothing makes sense – the air is blue !!

    I woke up this morning flat, gutted and sick at what has been done to our vulnerable, abused, off-the-scale ill, suffering, ragged, tattered community, where so many, like Angela, have been fighting for decades and where you, Jeannette are an enormous source of hope for your steadfastness, your courage and your extraordinary victory; yet all of us are barely holding on by our fingertips.

    Sally and the folk in Belfast, my home town, have been badly betrayed !

    Things are tough : the forces we are up against appear to be all powerful in their outreach and influence, the “ME/CFS” patient movement is an almost hopeless muddle, there is a rapidly growing , extremely dangerous, biomedical fatigue agenda, which threatens to bury ME , especially the most severely affected, meantime the chronic lack of honest advocacy or accurate representation continues largely unchallenged. It is hard to think of an “ME” organisation that has not been compromised.

    It feels as if people with ME are a particularly easy target for anyone out to make a quick buck, massage an ego, advance a corporate agenda.

    Sadly, Linda, who has been badly harmed and I learned a long time ago that most people let you down.

    But we take back our power, we fight on.

  12. I’ve come to the conclusion it is possible also that Coyne IS invested in psychogenic explanations after all. This would explain his hostility to me – the attempt to discredit my own body of work and analyses as “off the wall” (though here it also appears he is getting me and Jeannette – that lawyer woman he calls her at one point?- confused with each other), and that I allegedly “don’t know what I am talking about” etc. It would also explain his defence of Wallitt and promotion of Cort’s apologia for Wallitt (which is partly why I challenged Coyne on twitter. That and his attack on U.S. advocates’ cogent critiques of the NIH study, as ‘premature overreactions’). Now he’s telling people to stop letting us dominate the converation? That we attack more reasonable people? It’s very, very strange and has led me to reassess Coyne’s whole motive for taking part in the PACE issue now. I’m used to being falsely accused of ‘attacking’ people just because I dare to disagree with someone! That’s gone on for years. But Coyne’s obsession with shutting people like me up, getting us shunned, etc. should be ringing alarm bells in the community. It’s not the whole story, but possibly a small piece of the whole puzzle.

  13. Thank you for so concisely recording this debacle Jeannette. It’s a shocking interlude, but hopefully only the merest of footnotes from one paragraph on one page in the history of this disease. Coyne has only done himself a disfavour, not us. In fact if anything his behaviour clearly illustrates the preposterous parallel universe of abuse people with ME regularly attract from people in positions of relative power (though in his case the ‘power’ seems to be largely in his imagination) especially those from the disciplines of psychiatry and psychology it would seem. Just another day in ME-Land. As you know I’m fully behind your own resolve in terms of advocating for people with ME. If Coyne chooses to continue with looking at PACE then that’s his intellectual choice but I don’t want him to assume the role as an advocate for me. I suspect many others will now feel the same.

  14. meagenda says:

    100% behind Jeannette, too.

    Back in November, Coyne very publicly blocked me when he mistakenly thought he was being criticized on some aspect of his Edinburgh talk:

    Had he slowed down for just a minute, he’d have clocked that a series of tweets into which he had been copied were not about him, at all, but solely concerned Prof Peter Denton White’s 2008 RSM presentation. He didn’t stop to ask for clarification or to discuss what he (erroneously) thought he was being challenged about – he just publicly announced he was blocking me and then hit the “Block” button. He then blithely cleared off to a movie for several hours.

    He did eventually unblock me – after representations had been made directly to him by people who know me and my work well. But by then damage had been done. Prof Michael Sharpe had clicked the “Like” button – giving my blocking wider reach; psychologists who admitted they knew nothing about the circumstances behind the blocking, nevertheless took the opportunity to post snarky comments. But some ME patients also had a go at me and I was more or less told I should “suck it up for the greater good” etc.

    I did eventually receive an apology and some clumsy attempts to back pedal, although Coyne chose to leave his “I’m blocking @dxrevisionwatch” post and his related posts standing and they remain googleable. (I suspect he may already have had an agenda against me prior to this trigger happy incident.)

    What really disturbed me was the man’s rank hypocrisy. Just a day before, Coyne had been railing against suppression of criticism:

    yet the minute he thought his own opinions were being challenged, he didn’t hesitate to (very publicly) slap a block on a respected, long standing UK advocate and website owner.

    Jeannette writes:

    “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?”

    This possibility had occurred to me, also.

    Suzy Chapman, Dx Revision Watch

    • Utting Wolff says:

      It is not at all unlikely. His fierce defence of the NIH at the expense of those who have made critical comments and in-depth (not flippant) analyses suggests there are vested interests at play, it can’t be merely personal ‘outrage’ over a ludicrously harmless tweet, that’s for certain.

  15. L.A. Cooper says:

    I’m very concerned about this. True, it could be alcohol related, but considering it’s a prolonged form of communication, likelihood is, it won’t stop any time soon.
    My main dread is that Coyne will further drag the M.E. community into the mud in the eyes of NHS, NIH etc. and will promote the “M.E. militant” label forced on patients.
    What’s going on here? I think intervention should be considered amongst patients/activists. Will look into it as soon as possible.
    -L.A. Cooper
    Change For M.E. Change For Us

  16. meagenda says:

    He’s just blocked me again following my having tweeted:

    .@JKBurmeister Extraordinary to witness support of unconscionable behaviour by a so-called “professional”

  17. Anonymous says:

    I’m the Paul in one of the tweets. As I said on the discussion over at Invest in ME Coyne’s behaviour is very hypocritical and abusive, something that has been mentioned to me in private before but I’ve tried to make excuses for. Simon Wessely blocked him as have other people involved in campaigns for open data who have felt bullied by Coyne. Now, you may be thinking well Simon Wessely, why should I care? Like it or not, he’s not rude on Twitter and doesn’t automatically reach for the block button, I’ve certainly been critical of him and haven’t been blocked. I’m also not a professional and I do think Coyne should be held to slightly higher standards. That’s before we even get on to calling sick people crazy, delusional or throwing swear words around so freely. I’m not the most tactful person, but I don’t swear on a public page where children frequent. I am grateful for his work and to some extent have made excuses but I will not anymore. Whatever the rights and wrongs of the initial tweet, Coyne’s behaviour and attitude is simply unacceptable. I don’t care how valid his criticisms are. As someone involved in open data campaigns stated to me “Coyne has made PACE toxic and people won’t touch it”. I didn’t want it to be true but I fear it is.

  18. I’m the Paul in one of the tweets. As I said on the discussion over at Invest in ME Coyne’s behaviour is very hypocritical and abusive, something that has been mentioned to me in private before but I’ve tried to make excuses for. Simon Wessely blocked him as have other people involved in campaigns for open data who have felt bullied by Coyne. Now, you may be thinking well Simon Wessely, why should I care? Like it or not, he’s not rude on Twitter and doesn’t automatically reach for the block button, I’ve certainly been critical of him and haven’t been blocked. I’m also not a professional and I do think Coyne should be held to slightly higher standards. That’s before we even get on to calling sick people crazy, delusional or throwing swear words around so freely. I’m not the most tactful person, but I don’t swear on a public page where children frequent. I am grateful for his work and to some extent have made excuses but I will not anymore. Whatever the rights and wrongs of the initial tweet, Coyne’s behaviour and attitude is simply unacceptable. I don’t care how valid his criticisms are. As someone involved in open data campaigns stated to me “Coyne has made PACE toxic and people won’t touch it”. I didn’t want it to be true but I fear it is.

  19. Neuroconscience says:

    Coyne is a bully and personal attacks are his MO. Myself and several other scientists tried to point this out and stand up against him, only to be thrown under the bus by ME patients who follow him. I am glad your community is finally realizing this guy stands only for himself and does a disservice to your cause. He drives away scientists and advocates who would otherwise whole-heartedly support your cause. He has a well established history of turning to slander, insults, and bellicose behavior the moment he gets into disagreement. Literally no one is safe from this guy – I’ve seen him now attack everyone from staunch open-science activists to patients themselves. In the end it is always about his ego and need for drama.

    • Patty says:

      I wish that people will be open and honest about the so-called professionals that have our (patients) very lives held in limbo. Please speak up when someone such as Coyne is not the real deal, we have enough to worry about just getting through our day. The fight goes on, and is only a job, grant, or position to some….but our very lives hang in the balance!!

    • We didn’t want to believe it out of desperation. You were right.

    • Unfortunately, whether Coyne has alienated ‘scientists’ or ‘skeptics’ etc. many were not on this community’s ‘side’ in the first place. I’ve yet to see a person identifying as a ‘skeptic’, for example, who ‘wholeheartedly supports’ the cause of this community i.e. fighting the constant mistreatment committed by medics, researchers, government and various others under the edifice of psychogenic explanations for this illness. This includes the process of the PACE trial and its promotion. I haven’t seen many ‘scientists’ either who both were supportive of the fight against that mistreatment, and certainly not those engaging with Coyne. What I’ve seen is pious self-righteous excuses not to critique PACE and proponents of psychogenic explanations for this illness gaslighting the community and being hostile to Coyne. In fact, I’ve seen people use the excuse of Coyne’s alleged bad behaviour (yes even when he’s been reasonable) in order NOT to engage with these issues, pretty much the same thing it looks like Coyne is doing. Oh yes, and the constant attacks on advocates over on Ben Goldacre’s Bad Science Forum over many years, as just one of many examples. If there are genuine scientists and skeptics out there who understand that this community’s concerns and objections are evidence based, rational and often scientifically sound, I’d love to see them.

  20. I am 100% with Jeannette too and I’m extremely grateful for her cogent narrative of the situation here. I’m also horrified by what the ME patient he swore at in personal messages has had to endure.

    If Coyne is out to promote ‘ME militant’ label on the community, then we are looking at ‘Duchinesque’ management techniques first perfected against those campaigners who were working to combat the tobacco lobby’s insidious effects. The techniques basically involve portraying some people as ‘radical’, beyond the pale, ‘extremist’: then co-opting those who (naively) consider themselves as ‘more reasonable’ than ‘the radicals’ (the so-called ‘realists’) to divert from important issues and divide communities against each other. Now I would say this has been going on for years with the ME community anyway. There have been concerted attempts to micromanage the community to keep us docile, in my (reasonably informed I would say) opinion. If so, whether Coyne would be doing this deliberately, or is just easily led to think like that himself at the moment is anyone’s guess. He is showing signs of the process at the moment. As Suzy also mentions, the hypocrisy (to the point of doublespeak!) in his behaviour is evident.

    • MoGoggins says:

      Thank you for the explanation of ‘Duchinesque’ management techniques. Makes sense. I’m sorry for your gross mistreatment (encouraging others to block you) as well as that of Jeannette, Mary Ann, and others.

  21. Kimberly Deneris says:

    I can’t even believe what I am reading when I see how Coyne has treated our community. It seems likely that he is looking for an excuse to bail out, but also suffers from some form of mental illness, and/or has substance abuse issues. Jeanette, congratulations on winning your FOIA lawsuit against NIH. The impact on your own health must have been terrible. I’m grateful to you for advocating for our community, and especially so because of what your efforts must have cost you personally. No one needs an advocate like Coyne. He is so out of control himself that it is difficult to believe he could be helpful to us in anyway whatsoever.

  22. Rivka says:

    Just hearing about this now. Thank you for taking the time and energy to tell us what is happening. Jeeeesh. I thought your tweet to Collins was completely appropriate. I’m so sorry Coyne went off on you. Please take care now and rest. We need you! — Rivka

  23. acouchy says:

    I do not agree with the language he used. I think he should apologize for the language. I don’t think it is fair to ME/CFS patients or for the fight for open data sharing for him to quit because he does not agree with some.

    My brain fogged thoughts…
    At the start he stated that he is not an advocate and he is not our saviour. He wants open data sharing and the Pace trial just happens to fit. Yes, his talks in Scotland and Ireland confused me but I took his word that he not an advocate as truth. Yet the patient community has largely put him on a pedestal. He has done some great work that has benefitted us and I for that I am grateful.
    I think the patient community is smothering him. Patients tweet every thought that enter their mind @ him. Patients tweet him about things not relating to PACE. Many have friended him on Facebook. His latest blog entry almost seems to foreshadow what happened yesterday. Patients should not forget that he has not experienced what it is like to have this illness or experienced first hand the stigma attached to ME/CFS. He can never fully understand the pain or frustration that we experience.

    I do believe that patients flood email inboxes and excessively tweet govt, researchers, journalists with messages of frustration. As someone who has been ill for almost two decades I understand that it is coming from a place of pain and utter frustration. But for non sufferers who are not living our nightmare it can easily be seen as harassing and most likely does not help our cause. It also leaves us open to being labelled as crazy. Generally, I agree that we need to be united. Lately I have been thinking using advocacy groups may be the best way. Send one letter, petition, etc. with many names attached instead of risking being labeled as a bunch of crazies. Unfortunately, in the past we have been labeled as such and now we have to be beyond well behaved. No it is not fair and it is not right
    .
    Personally I just want to concentrate on supporting all the good researchers who are working hard on finding answers about this illness. No energy to spare on all the negative stuff.

    I just wanted to say that none of the above is directed at you Jeanette. Just how I have been feeling lately about all the things I have seen. I am grateful for all you have done. I wish you better health days. Thank you for all you do.

  24. admindxrw says:

    He’s also blocked @KeelaToo http://sallyjustme.blogspot.co.uk/2016/02/professor-coyne-what-happened.html and James David Chapman @batteredoldbook

    Suzy Chapman Dx Revision Watch

  25. I’m afraid I’d never heard of Jeannette or Coyne (interesting he calls himself coyne of the realm – delusions of grandeur?). I have never read a tweet more often than I did Jeanette’s, I believed my ME brain must be deceiving me so I broke it down word by word to find this ‘trolling’, ‘abusive’ or ‘rude’ language. A few days before I saw Wallitt’s interview and was sickened and appalled – once more ME and Fibromyalgia were all in our heads and he told doctors to ‘tell the patients what they want to hear’ as though we are so insane it would be dangerous to discuss with us! In the circumstances I thought Jeanette’s tweet to the NIH very reasonable. Why did Coyne feel the need to repost the tweet on the Invest in ME page?? Most of us didn’t know what was going on, why this man was swearing at us and ordering us to apologise. I can’t apologise for another adult’s behaviour, let alone one I’d never heard of (sorry Jeanette) and one who lived in another country. I was very upset with his behaviour. I fear having this erratic man, who cannot control his own behaviour, as an advocate for ME will prove that it is a psychiatric illness to the doubters and do us far more harm than even the PACE trial. He kept accusing everyone of being abusive when he was the only one being abusive. Good luck Jeanette, take care and rest up.

  26. elsvh says:

    Just Reading About all of this today.
    Like others i was very confused at starters, then outraged.

    Jeannette, You are one of our most important, fierce, level-headed advocates around.
    I hope this thing won’t affect You And others who’ve been abused in all this too much. So unfair, so sad, so infuriating.

    A thought came to my mind: could it be that a lot of us Saw a fellow-ME-fighter in JC whereas he’s not fighting our cause but only opendata And certain psych’s?

    The NIH/NINDS study is purely About good science for ME(cfs). Not About data, but About criteria And appointed scientists. Very important to pwme globally.

    But, as it is not a fight for data etc this fight itself is not if interest to JC.
    The fact that it’s a fight, a plee, directed at NIH seems to trigger the worst in JC.

    I must admit I was warned About him but i too was blinded by this unexpected support of our Pace fight.

    I can only hope most pwme know your track record And Will See JC’s true colours as of now.
    We can fight Pace & NIH & the Karina Hansen case without him.
    And we WILL keep standing strong and together. We’ve had worse people And setbacks to deal with in the past.

  27. Mary Ellen "Ellie" Strand says:

    Too much PEM for a long message, but made it through post and comments. Coyne was out of line using profanity and what could be termed a personal vendetta against certain ME advocates. I support you and thank you.

  28. Donna says:

    With friends like these, who needs enemies? Others will come to take his place. IMO, the community owes him only a reminder not to let the door hit him in the rear on his way out.

  29. admindxrw says:

    After spending the weekend hurling abuse across two Facebook Group pages (and at least one individual, via PMs), here are some of his latest pronouncements. (If blocked, it is still possible to access some of his content via the twitter Search box.)

    “I am getting lots of complaints from outsiders about nastiness they are seeing coming out of community. Need to address it”

    “A blog is forthcoming. I and others are being bombarded by same trolls on @twitter and FB who persist when blocked”

    “Patient community is seriously embarrassing itself and alienating many people who don’t have clue what’s happening”

    These are risible for their irony. It is beyond me how anyone, whether clinical/research professional or patient/advocate/patient org can give the man any credence, at all.

    And it’s a pity that the mods of both Facebook pages have removed all trace of his unconscionable behaviour on a public platform.

    Suzy Chapman, Dx Revision Watch

    • alitheartist says:

      To your last comment – that’s a pity, I was looking forward to catching up with it – I’ve only just come across this whole debacle. I’m appalled and feel stupidly naive for signing that group card to him!

  30. This post is incredibly cogent, articulate, well-organised and sensible and I’m grateful that your brain works so well. I hope it didn’t come at too much of a cost.

  31. John Gabor says:

    Been offline mostly for weeks. What a slap in the face to the ME community and especially to you Jeannette. Yes, we need well and respectable advocates. Obviously, these exchanges show that Mr Coyne is neither.

  32. Gabby says:

    The most vulgar, abusive tweeter, self appoints himself the “king of twitter etiquette”!
    But there is something much larger and sinister happening here.
    Coyne is attempting to silence the voice of long time ME advocates. This is called tyranny! His actions are those of an abusive personality. It is either his way …or the highway. We either succumb and kneel down to him begging for forgiveness or he is “f…ing out of here”.

    His abusive words have had a devastating effect on a group of many ill patients but of course he doesn’t care. He can’t even recognize the abuse that he has perpetrated. I say “good riddance”!

    I’m so sorry that you have had to endure this Jeannette. I know how sick you have been these past months. This is abuse of the worst kind!

  33. cari says:

    He sounds like hes got Narcissistic personality disorder.

    • That is exactly what I thought. Lived with a Narcissist for 25 years. Will never miss the abuse and will not miss Coyne. Great blog Jeannette! Fully behind you and give you any bit of energy I have to aid in this fight.

  34. Ess says:

    Here’s the thing — when ‘behaviour’ presents — it is very telling who/what we are dealing with. Coyne has EXposed himself big time–now to us–the M.E. community. The weekend performance is part of the plan. Thanks, Jeannette–we know who is credible … and that is you and all that you do !!!! Tweet–tweet 🙂

  35. Elsie says:

    So sorry if I’m stating the obvious or something that has already been taken on board, but I’m pretty sure I saw a tweet where Coyne said he had supervised the Wallitt study that was being discussed. Could this be the key? I’ve not seen anyone mention this, so wanted to make sure it wasn’t being overlooked.
    Thank you for the excellent post Jeanette and I’m sorry everyone’s going through this.

    • Yes – he says in one tweet he supervised ‘chemobrain’ study. Whether this was the Wallit one or another is not clear. Either way, he appears wedded to psychogenic explanations (he goes on about ‘lack of objective deficits’ and ‘something higher’ in his tweet). Again – this could explain his behaviour because people have challenged and objected to Wallit’s incoherent psychogenic explanations. It explains the desperation to paint me and Jeannette, for example, as people not to be listened to because we allegedly ‘dont’ know what we’re talking about’ (not to make it ‘about me’ – but this support of Wallit, Cort Johnson etc. by Coyne is strange, unless one considers he IS invested in psychogenic explanations – even for M.E. 😦 Obviously my work directly challenges that whole belief system.

      As did Jeannette’s critique of Wallit recently of course. Considering that (which I had forgotten I’m sad to say) DOES add even more evidence supporting the possibility that Coyne has an investment in psychogenic explanations even if it means continuing damage to the ME community 😦

  36. ahimsa_pdx says:

    I generally don’t follow or understand online “wars” – either on Twitter (where I do have an account) or Facebook (where I do not). Mostly it’s because it’s often hard figure out, let alone remember, who is mad at whom!

    Brain fog makes it hard to hold grudges when I can’t remember who said what. 🙂

    That said, there is absolutely NO EXCUSE for language like this. I am so sorry that this happened to you!

    Assuming those Facebook screen shots are real and are from James Coyne (did someone hack his account?) then he should definitely apologize to you.

  37. Colleen Steckel says:

    This has been jaw dropping. Thank you for clearly laying out the situation. I’m sure I’m not the only one who struggles to keep track of tweets and conversations on FB. It is clear there is a lot more going on here than your one tweet. You aren’t the only one that feels holding NIH and CDCs feet to the fire is the only way we are going to find our way out of years of institutional bias against people with ME.

    Having been part of this community for 26 years, I’m appalled at what has happened repeatedly when we tried to combat the system. This is NOT the first time people we hoped would champion our cause threw us under the bus.
    By now we should be used to the following:
    Patients getting blamed for not recovering.
    Those who have no idea what we are dealing with condemning patients for being angry about lack of respect and treatment.
    Those who don’t want to “rock the boat” complaining that patients are pushing back against the institutions in the U.S. who are responsible for creating the bias toward us that prevents getting real answers.

    The bottom line is – patients are not recovering… they are dying (one way or another)… and not at a ripe old age of natural causes. And more people are getting sick everyday!
    So… we aren’t going away.

    Jeannette – sorry you are taking the brunt of this when you are only the tip of the iceberg.

  38. Reblogged this on Short Blogs for the Distracted……… and commented:
    Thank you Jeannette..

  39. Joanne says:

    This wreaks of “doctor know it all” itis! When they don’t have legit answers they become abusive and/ or tell you you’re crazy! I think Coyne and Wallits are both unqualified. Wallits just ACTS more pleasant. Their minds and ears are closed. Not how we are going to make any progress and we are all tired of this nonsense and waiting! We all KNOW there is a biological basis for this illness! Come on!

  40. Anonymous says:

    After reading this…I am left speechless that he has behaved like that. I was somewhat bewuildered last night when I dipped into the conversation. Goes to show that there are two sides to every story!
    He painted Jeanette as a psycho…now I know different. He is a BULLY 😦

  41. Sharon says:

    Jeannette, thank you for writing yet another clear, elegant, insightful and rational post. Coyne’s own words are far more self-damning than anyone else’s could be.

    By any measure I cannot imagine such words or actions coming from a healthy individual. Something is not right. More than that, I am deeply saddened that you were attacked at all, let alone so viciously, emotionally and publicly. Few (if any!) ME patient/advocates have given more than you, and at great personal cost. I am very grateful for your generous efforts and hold you in the highest esteem.

  42. Mary Ann says:

    I support Jeannette 1000%. Thank you for writing this blog.

  43. Lesley Cowin says:

    I witnessed Coyne’s abusive rant on FB yesterday. Until then, as I live in the UK, I was unaware of him as “our Saviour” or, to my shame, you Jeanette as ME Advocate. His comments left me open mouthed. I find his abusive over reaction to be somewhat suspect. I read a blog of his yesterday and was left none the wiser. Your Blog, on the other hand, Jeanette is considered and informative. Thank you, Jeanette for your advocacy and I hope your health has not suffered too badly and that you improve quickly.

  44. joe kane says:

    If anyone is responsible for causing splits and divisions its Coyne who is actively campaigning to have people isolated and ostracised merely for daring to engage in pubic discussion or worse, point out his bullying abusive behaviour in public and in private.

    Unity at the expense of people being abused and forced from public view for daring to expose the abuse is the stuff of establishment scandals here in the UK.

    Over-the-top reactions at a pretty ordinary tweet to the NIH and demands that people be publicly silenced and forced to recant and acknowledge their errors isn’t science. It’s something else.

    I quite agree with Angela Kennedy’s analysis about the Duchinesque anti-activist tactics being deployed.

    Reference –
    Mongoven, Biscoe & Duchin: destroying tobacco control (2002)
    http://tobaccocontrol.bmj.com/content/suppl/2002/03/18/11.1.DC2/4_200261.pdf

  45. Alex Young aka alex3619 says:

    The science issue isn’t just about open data. Its about open analysis, and open debate. Its about organizational transparency and accountability. Silencing fair debate harms the scientific process itself. Trolls are different, and more obvious.

    Most people have run into trolls. They do not have cogent arguments, they do not reference anything, and they ignore what others say. There are several ME trolls I am aware of, out there. Several out of thousands of advocates, and millions of patients. Sure there are probably more. However advocates have to say things others may not like. That is core to advocacy. Trying to silence that is equivalent to trying to silence advocacy, and our voice is already too weak.

    I find criticism of the NIH bungles to be fair and reasonable for the most part, though I do not personally agree with trying to shut the study down. I do think we need to see more transparency, and to have some power at the table, not just a seat. I find it disturbing the NIH appears to not have anticipated the issues, though I wonder if they did in fact foresee and are “managing” it.

    Bureaucracy not only typically dislikes sharing power, the rules governing their actions often prevent such a thing. Seats at the table are mostly for show, but at an informal level they can have an impact sometimes. CFSAC is the cautionary tale here. So many people, including experts, putting in so much time and effort, but its as if their recommendations and reports are filed in the little round filing cabinet that sits on the floor and the nice people take away to file at the end of the day. Even formal committees, of experts, can be sidelined.

    I do not think most people realize we have had evidence, including formal investigations (including Congressional) of CDC misbehaviour in the past. Followed by the appalling legal tactics of the NIH in trying to deny FOI requests. Good governance is grounded in good information, open information, its not just important in open data in science. Our distrust is grounded in history.

    I agree with Angela Kennedy that the problems with PACE are not just technical ones, which Coyne is very good at. There are more subtle and pervasive problems with PACE and the entire BPS and psychogenic movements, and they require an entirely different skill-set to discuss. This goes to the core of what is failing in psychiatry, and hence within a subset of medicine.

    This is not just about science, though that is important. Just yesterday there was a media piece about a possible diagnostic test for (strictly defined) CFS in Australia. There are major and muddled political and social issues here too. This includes medical politics and failures in medical and scientific culture.

  46. Connie says:

    Something is fishy here. At first I thought maybe Coyne got hijacked, because surely someone of high intellect and sound mind does not react this way. Possible substance abuse, OR, is this just an excuse being used to cover something up, OR, possibly something much more complicated? Trying to pit UK patients against US patients? There are no state or country lines among those of us that share ME friendships, and hard times. We all ultimately want and need the same thing…. Many thanks again to Jeannette and the others that stood up to his bullying and abuse, but very sorry that you had to deal with that negativity, and I sure hope it does not take a toll on you. Obviously he knows little about our illness, or does not care. Either way, I think we are better off without him.

  47. Dear Jeanette:

    Thanks for making this public. Please accept my support – no one should send the kind of words you have been subjected to to another human being ever. Whatever credibility he might have had is destroyed by his own words.

    Alicia (fellow ME/CFS person here)

  48. thespid says:

    I saw the FB debarkle and was astounded. Being asked to apologise for an inoffensive tweet, that rightly challenged important decisions was ridiculous. The offensive way in which it was demanded wasn’t what I expected. I wondered about drink, or drugs, or a hacked account. I think he has opened a lot of people’s eyes to him now. I don’t believe he is ‘our’ advocate. We don’t have a ‘community’ with leaders; for many of us making a coherent sentence with words of more than one syllable can be hard. Organising a disparate group of people from all over the world on different time zones – really difficult! And even then we would all have different ideas and views. BUT, I believe, would all stand by your tweet. I don’t ‘do’ twitter, I struggle with it and don’t have the energy to learn and retain it’s complexities. (My daughter tells me it’s not complex but I still struggle). And so I hadn’t really encountered you before Jeanette (I’m in the UK). My full support goes to you.

  49. Now Coyne is stretching the definition of abuse to suit his purpose. Anyone, attacked by him, or blocked, daring to publicly retweet a tweet someone else sent to him, is committing ‘abuse’. This would be comical, except this whole situation is not funny and I’ve already seen apologists seize on it. We’re back through the looking glass and the place where hamburgers eat people. It’s positively Wesselyesque (another one who stretches definitions such as ‘harassment’ and ‘abuse’ to suit himself): : https://twitter.com/CoyneoftheR…/status/704676175407353860

  50. jimells says:

    If Coyne thinks that he can intimidate advocates into silence then he is very much mistaken. I’ve been physically attacked and threatened with guns and knives. I had a coworker die under me while I performed CPR and everyone else stood around like scared sheep. I survived zero income, bankruptcy, and a lawsuit to take my house, all in the middle of a six year struggle to get Social Security benefits. I’ve been in groups that were spied on by police. I’ve considered suicide more times than I can count.

    And Coyne thinks I or anyone else still alive in spite of this horrible illness will be frightened by the likes of him?

  51. It’s taken me a while to read your blog and I thank you for clarifying the issues. Abusive and offensive comments targeted at patients are inexcusable. I fully support you and all the other true advocates for patients with ME.

  52. Carol Olsen says:

    I am so sorry you received these rude and ungentlemanly responses. We are proud you never stooped to his level. Many thanks

    On Mon, Feb 29, 2016 at 12:12 AM, Thoughts About M.E. wrote:

    > Jeannette Burmeister posted: “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 ” >

  53. Pingback: Standing Up to Coyne and Against Unfair Treatment of ME Advocates | Thoughts About M.E.

  54. johnnydme says:

    Dear Jeannette,

    I’m extraordinary saddened you would be singled out in this way with the most gratuitously abusive posts. This whole thing is odd, and not just his vitriolic abusive language but the presumption that we patients are somehow his “pets” because has been very helpful to us in applying pressure to get the PACE data released. Or that we have a single unified community-LOL at that one.

    Your Tweet was also several days old before he attacked. I don’t know what happened in the meantime…and would rather not speculate atm.

    Whatever happens we should avoid what looks like a classic “divide and conquer” strategy: to make it so the patients supporting Coyne and the patients disgusted at this feel mutual hostility.

    I, myself, was willing see the prior blockings as the actions of an eccentric but ultimately well intentioned person….Who, while they knew very little about the history of ME, could be an extraordinary help on this one issue of Open Data; the PACE trial.

    I’m very sorry to hear the stress of this has affected your health. Just reading his bizarre post was very stressful so–indeed I can’t imagine how much worse it would be to be the target of it.

    Kind Regards,

    -johnnyduncan

  55. admindxrw says:

    It’s only a week or so ago since Coyne stated that SMILE was the children’s PACE – and had to be corrected. And he didn’t seem, yesterday, to have taken on board that Esther Crawley is Medical Adviser to AYME – crucial for placing AYME’s long-term position on the PACE Trial into context.

    Now he’s evidently turning his sights towards the SMILE Trial (Esther Crawley’s Lightning Process in children feasibility study):

    I very much doubt the person who might have background briefed him on what has been done to date re the SMILE pilot study – the FOIs, the complaints to ethics boards and National Research Ethics Service, the charities’ involvement with these complaints and with Trading Standards vis a vis Lighting Process practitioners etc ( archived at: https://meagenda.wordpress.com/category/lightning-process-smile-study/ ) will be briefing him, since he inexplicably and viciously ripped into that person during his Facebook meltdown.

    Well good luck with Prof Crawley James.

  56. MoGoggins says:

    “If something isn’t done about it, I am withdrawing form [sic] the struggle.” Freudian slip? He gives the impression of trying to “form” the struggle and in a very heavy-handed way. You have my undivided support. Take care.

  57. Pingback: The #CoyneEffect: Is the ME Community Stepping Up or Backing Down? | Thoughts About M.E.

  58. Pingback: A New Direction | Thoughts About M.E.

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