Standing Up to Coyne and Against Unfair Treatment of ME Advocates

[Update 5/5/16: For context and background on Ed’s post below, please read my blog post, “Has the “Coyne of the Realm” been devalued?” It describes in detail some of Coyne’s abuse of patients in the ME community, including myself. The mistreatment seems to be ongoing, as he continues to call patients “assholes” and “nut cases” and who knows what else.]

By Edward Burmeister

I am taking the liberty of posting this entry on Jeannette’s blog.

Many of you know that I seldom become involved in ME advocacy. My wife, Jeannette, is typically capable of holding her own. She has been, health permitting, a relentless advocate for ME for several years and has been effective in holding government agencies and officials accountable when their actions or inaction have damaged the ME patient community, and in particular when they have not lived up to their legal responsibilities. It is true that she has strong opinions on how to conduct effective advocacy and states her position assertively, but I can assure you that she makes it a priority to focus on the issues and to stay away from personal ad hominem attacks on other individuals advocating for ME. On the rare occasion when she has made a mistake, she was quick to apologize and set the record straight. Far from being self-promoting, Jeannette has gone out of her way to support and give credit to other patient advocates for their efforts. When her health allows, Jeannette collaborates with other advocates, typically behind the scenes. Among other things, Jeannette’s advocacy efforts seem to have derailed the massive price increase for Ampligen that was scheduled for next month, which according to the Ampligen study coordinator is now not going into effect for the time being.

Jeannette has made sacrifices for the community that go above and beyond. Aside from traveling to Washington, DC on numerous occasions on her own dime, she has paid the travel expenses of other advocates for DC trips. She anonymously paid the Incline Village rent for another patient whom she barely knew, so that that patient could get Ampligen. Not only did she risk having to cover the $139,000 in attorneys’ fees from her FOIA lawsuit herself, she ended up paying about $60,000 in taxes on those fees. In addition, as the plaintiff, she also was not able to bill for the time she herself worked on the lawsuit, which would have totaled additional tens of thousands of dollars. There are many other ways Jeannette has helped patients and the community that few know about. She gives back as much as she can without bragging about her generosity. And while we are financially comfortable, for which we are very grateful (and because of which we would have never thought of asking the community to chip in, for the attorneys’ fees, for example), her financial investment in her own and others’ advocacy has been significant and affected us financially fairly dramatically. (After all, Jeannette is disabled like so many ME patients.) Yet, she has not once talked about that.

The recent incident starting with the Facebook posts of Dr. James Coyne on February 27, 2016, is so outside the realm of reasonable and civil behavior and has affected Jeannette’s health so directly and adversely as to render her physically unable to defend herself at the moment, that I simply cannot stand by and witness this without comment.

Her blog entry, “Has the “Coyne of the Realm” been devalued?” sets forth the facts. I will summarize these briefly, however. It is important to know that Jeannette had been a supporter of Coyne’s efforts on behalf of the ME community and has never stated, publicly or privately, anything that could possibly be viewed as attacking him in any way. She did thoroughly analyze the public interview of Brian Walitt of September 2015 concerning fibromyalgia when she found out that he was to be the lead clinical investigator of the proposed NIH intramural study. She posted a blog entry, “Brian Walitt’s Radical Bias: Disorders of Subjective Perception, ME/CFS as Normal Life Experience?” based on the Walitt interview, expressing her concerns regarding his participation in the NIH study given his stated views concerning fibromyalgia.

Then she tweeted the following to the head of NIH, Francis Collins, with a link to her blog post (22 retweets and 30 likes as of now):

“Not one bit embarrassed that Walitt works for you, hurts very sick patients? What an agency you run!”

Notice that neither Jeannette’s tweet nor her blog post contain any direct or indirect comments on, or criticisms of, Coyne nor would anyone reading these perceive any conceivable attack on Coyne. Coyne would not enter your mind at all. Her tweet was assertive, but completely within the acceptable and reasonable range for advocates who take issue with government actions. One might even consider the tweet reserved given the history of the neglect of ME by NIH. Also bear in mind that Jeannette had filed a FOIA request with NIH to obtain documents concerning the genesis of the IOM study on ME/CFS. She was met with unconscionable obstacles and obfuscations by NIH, requiring her to file a lawsuit, including misrepresentations under penalty of perjury by NIH officials. Only after an arduous legal battle did she obtain the documents to which she and the public were legally entitled. The NIH behavior was so inexcusable that the Judge in the case awarded all her attorneys’ fees (highly unprecedented), totaling $139,000, and specifically called out NIH for its unreasonable conduct in this case.

It is simply not tenable to maintain that her tweet was “abusive.” You may not agree with it or with her tactic of criticizing Walitt or the handling of the proposed study by NIH, but the tweet was absolutely fair game and within acceptable standards of reasonable advocacy. With this background, it was shocking to her, me and most of the community that Coyne stepped in and demanded, in effect, that the patient community condemn Jeannette’s tweet, insist on an apology from the community for the tweet and ostracize advocates like Jeannette, calling her a “sick crazy lawyer,” having a “history of being abusive towards reasonable informed Americans” and posting a “nasty and abusive tweet.” He demanded that the patient community step up and “stop the abusive crazies” or he would stop helping with attempting to obtain documents relating to the PACE trial. When many questioned him on this, he called them names (e.g., “delusional”) and told them to “fuck off.” All of this because Coyne disapproved of Jeannette’s reasonable approach to advocacy.

Please keep in mind that this is coming from a renowned Ph.D. in psychology with a large public following and a recent position of prominence in support of patients with ME.

Coyne is a newcomer to this community and has apparently developed a pattern of labeling long-term advocates with whom he disagrees as divisive and destructive and asking others to ostracize them for simply expressing any views that are inconsistent with his views or approach to advocacy.

I sincerely appreciate, as does Jeannette, the large outpouring of supportive comments from patients in the ME community, public and private. Unfortunately, she has been too sick to thank everybody individually, as she wanted to. As ugly as this has been, Jeannette tells me that a number of new alliances have been formed over this and for that, she’s grateful. We are both especially heartened by the fact that the majority in the community has a functioning moral compass.

Unfortunately, there are a few who have apparently harbored resentment against Jeannette and have taken this opportunity to add to the abuse from Coyne, calling her names, such as “textbook narcissist” with her following of “flying monkeys.” To those few people who thought it fit to pile on in the aftermath of Coyne’s revolting mistreatment of Jeannette by egregiously defaming Jeannette and spreading vile lies about her (some of which are urban legends revived from years ago) and engaging in other character assassination, maybe you want to check in with your conscience because your behavior shines a bright light on your value system and, quite frankly, it’s not flattering. The same goes for those hosting or “liking” such comments.

Jeannette is currently undergoing an intense five-days per week treatment regimen for a medical issue secondary to ME, on top of her infusions. Continuity is crucial for the efficacy of that treatment. That is now in jeopardy due to her decline as a result of Coyne’s verbal and emotional assault. No sick person should be forced to choose between protecting her health and defending her reputation.

It is alarming that some have supported, or at least condoned or downplayed, Coyne’s behavior. Some have suggested that Jeannette somehow brought this on herself, which is not only untrue, but also constitutes shameless and cruel victim blaming. Some have justified it under the greater good theory, in other words, we need Coyne’s advocacy for obtaining the PACE data, so we have to sacrifice a sick patient advocate who has labored for years at great personal cost on behalf of this community and tolerate her abuse by Coyne. Others are saying that they disagree with his language, but basically agree with his sentiment about quieting advocates who don’t toe the party line. I want to be very clear that the foul language, as unacceptable and revealing as it is, is not the main issue here. Had Coyne done what he did—calling sick patients “crazies,” resorting to defamation, trying to coerce a vulnerable patient population into an apology (when he is the one who should apologize) and into shunning advocates for no reason whatsoever—but done it in a more polite manner, it would still have been reprehensible. It’s the substance of what he did much more so than the style in which he did it that is so objectionable. The style does reflect, however, a disturbing aspect of his approach to advocacy. And let’s not forget that this was not just one comment. It was a sustained attack that encompassed many comments and no apology has been made. To those who have suggested that Jeannette back off on this and, in effect, suffer in silence in order that the ME community keep its focus, i.e., the taking down the PACE trial, I respond with two points. First, it was Coyne who launched the unjustified attacks on the community and key advocates. It is up to him to deescalate the situation by apologizing and toning down his rhetoric. Second, silence has facilitated Coyne’s attempt to shut down and ostracize other advocates—Suzy Chapman and Angela Kennedy and presumably others—without any repercussions for Coyne. Someone has to stand up to his bullying tactics. Otherwise, who will be next on the chopping block? Further, is it not possible that his extreme actions in this arena could backfire and give those who oppose his position on the PACE data ammunition to reject his demands?

We are assessing what steps we should take to bring accountability for the described actions against Jeannette, but mainly I wanted to let the community know how strongly I feel about this and how directly it has affected our family. I should add that I have served as the Managing Partner of the Bay Area offices of Baker & McKenzie LLP, the world’s largest law firm, and have never witnessed this type of behavior towards a professional in comparable circumstances, particularly by an individual who, by education and profession, should be compassionate and caring.

By now, Coyne has had plenty of time to issue an apology to the community and the advocates he specifically targeted, including Jeannette. He has not done so. Instead, he stood idly by as further attacks by others, clearly incited by his initial smear campaign against Jeannette, took place. It is clear that he is unrepentant.

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75 Responses to Standing Up to Coyne and Against Unfair Treatment of ME Advocates

  1. wildaisyfl says:

    Well said, Mr. Burmeister. I am grateful to you for supporting Mrs. Burmeister in her continuing efforts to help ME patients everywhere. Thank you both for all your efforts on our behalf.
    Patricia Carter

  2. Sarah-Louise Jordan says:

    I am so sorry to hear that Jeannette’s health has been impacted by this, although I understand why it would be. It is unconscionable that any patient should have to deal with this on top of thier illness. Your wife’s advocacy is heroic and I hope she knows that she is in many people’s thoughts at the moment and being sent a great deal of love from all over the world.

  3. Rivka says:

    I really appreciate this well written post — as well as all the important work Jeannette has done for the community. Thank you to both of you. — Rivka

  4. Colleen S says:

    Thank you for posting. This episode and the appalling behavior of Coyne has taken a toll on a lot of ME sufferers. I can only imagine what a toll it has taken on your family. Thoughts are with Jeannette and your family.

  5. I have followed all this with a degree of horror- I wrote to Coyne telling him that Jeannette is a high-powered lawyer who has been very active in getting the US Govt to make documents available, and that I felt sure that if he knew her, a mutually respectful relationship would be the outcome. I added that after years and years of sickness and advocacy, one might find ones capacity for measued and restrained responses wearing a bit thin.

    This has received no reply. In the meantime, his attacks have become increasingly vitriolic, unreasonable and obscene. […] He is certainly whipping around Eric Berne’s Dramatic triangle …Rescuer Victim Persecutor at very high speed.

    Another angle is that he rode in on his white charger, confident that he could slay the British Establisment dragon, and may have begun to realise that, sadly for us all, that particular dragon is a very tough old beast. So he’s turned on us instead. Rather than face up to defeat, or change his strategy.

    It is very disappointing …but, like Robert Kennedy said, with friends like that, who needs enemies.

    I hope that Jeannette can treat this with the same detachment that one would if a mad person who didn’t know her had started ranting at her in the street….this is all about this guy’s pathology and nothing whatever to do with her.

    Wishing her very well indeed, and so glad she has you to fight her corner…

  6. Julie Thoren says:

    Prayers and hugs to Jeannette, her husband, and daughter. I could not follow or handle the heated discussions with the person who attacked Jeannette. I will say, I also vehemently opposed the NIH selection of Wallitt and expressed my thoughts publicly. I cannot fathom why a certain American attacked Jeannette. His behavior made me question his mental health status. IWhile release of PACE data is huge, new patient “advocates” need to be vetted before trust is granted. Patients have been screwed way too long.

  7. Ess says:

    Thank you so very much, Edward, for writing to us. Jeannette is a stellar advocate and activist for the M.E. community — giving so much of herself selflessly in seeking justice for M.E. patients against the horrid INjustices ongoing now for decades. Jeannette’s efforts are second to none and we respect her and value her dearly. What has gone on this past weekend is an abomination–an orchestrated attack specifically at Jeannette and the M.E. community at large who do not agree with stepping back, dialing it down and using ‘inside voices’–on Mr. Coyne’s ‘say-so’–he calls us ‘trolls’ and ‘crazies’. Mr. Coyne, I’d say that you are out of your league — and your outrageous behaviours against very ill people are being held accountable.

    Mr. Burmeister, please give our love and hugs to Jeannette and your family. Thank you.

  8. This situation with Coyne’s appalling behavior and the continued mistreatment and abuse ME patients face leaves me with more sadness than words can say. I’m sorry those who fight for us, like Jeannette, so often seem to stand alone against evil because so many of us are too sick to fight. But we are with you in spirit. And wish you strength and positive energy. Thank you for fighting for us.

  9. Linda Mills says:

    Ess has written exactly what I think – far better than I could possibly write. Love and hugs to Jeannette, you and the little one.

  10. John Gabor says:

    Very well stated Ed. I am very grateful for all Jeannette and you have done for ME patients around the world. Unfortunately, people the likes of Coyne are a dime a dozen.. I am extremely saddened to see some ME patients side with Coyne as if he alone is responsible for the imminent demise of PACE. What they forget is that it is patient advocates, the likes of Jeannette, who do all the ground work to make it possible for people with celebrity to do anything. Unlike the line lighters, ME patient advocates don’t have the luxury of a childish temper tantrum and to move on to the next spot light. ME advocacy is currently our life project.

  11. Bettine Molenberg says:

    I am so sorry for Jeannette, it was an infamous attack. Wholy undeserved. I hope her health won’t suffer too much from this. Best wishes! Bettine

    > Op 4 mrt. 2016 om 02:22 heeft Thoughts About M.E. het volgende geschreven: > > >

  12. The coin has dropped, but because of the small value of it, I won’t take it from the ground. Thanks Edward, well said. Cheers from Belgium.

  13. Cheryl says:

    I continue to be extremely grateful for all Jeanette has done for the MEcfs community. I hope she is able to continue her needed treatments and get back to her baseline soon. Edward, she’s lucky to have your support and care. I hope you can relay good wishes to her for.

  14. cbastian2013 says:

    Thank you Edward, we are so grateful to have you at our side to speak up when most of us are just speechless. For days I try to think of a meaningful reply to Jeannette’s previous blogpost but I just can not find the words and I do not want to lower myself to mr Coyne’s level. Thank you for finding the words what I couldn’t.

    Sending you and Jeannette much love and many blessings.

  15. Andy says:

    So sorry this has affected Jeannette’s health. I was very surprised by James’ approach to this which does him no credit. In the conversation I took part in, most of the ME community were shocked by his words. I am glad of his advocacy on our behalf but if it comes at a cost of dividing the community, we would be better off without him.

  16. Sally says:

    Jeannette deserves none of this. Ed neither.
    Sending you both strength to get through this distressing time. ((Hugs)) xx

  17. IMO, none of what happened is in any way Jeanette’s fault. Coyne’s real motives of manipulation and exploitation would have surfaced sooner or later. As it was, he had to construct a particularly flimsy ‘excuse’ to try and demonstrate his control. […] They are always attracted to vulnerable groups and their lack of empathy and respect eventually becomes evident and sows havoc. Jeanette is worth a million of him.

  18. Tanya Marlow says:

    Coyne’s comments (and indeed his whole approach in silencing you and others as an advocate) are inexcusable. Please know that for the vast majority of the ME community, we are as shocked and deeply disappointed as you are by his behaviour, although not having to carrying the wounds personally. I recognise what a huge emotional drain it is to have to feel you need to justify yourself. Please know that even without your blog posts on Coyne, it was obvious from the interchange that he was completely out of order and acting most – irrationally (is the most generous term I can find). Jeanette, I hope that you can be really kind to yourself and allow these messages of support to be the guides in re-finding your equilibrium.

    With love and prayers.

  19. Thank you Edward… I empathize with every word, and this is without living within your family… the level of distress this must have caused you is surely overwhelming not least because of the totally detached, illogical , ‘apropos of nothing’, ‘assault out of nowhere’ in the first instance. I equally condemn those who act as apologists for this level of abuse and want to facilitate working with Coyne as having no moral compass…it’s absurd and I have said so many a time on Social Media since this broke last Saturday. And yet still people are banging that drum. How much more abuse do they want? Presumably they haven’t had their fill? I am stunned that anyone can default to that mindset.
    I hope Jeannette can rally from this and her treatment regimen need not be interrupted. If it wasn’t for advocates like Jeannette this fight would be even more uphill than it already is. Illegitimi non carborundum!

  20. My heart goes out to this family. Thinking of how this has affected their child too. When a mom’s health worsens, it is hard for the little ones to understand and not worry.

    Thank you Mr. Burmeister, for standing in the breach, taking up the flag. Sending Jeannette healing thoughts.

    Silence is not an option.

  21. Jan Masleid says:

    If anyone has earned the right to send a public message to a governmental department head it is Jeannette Burmeister, Juris Doctor. She doesn’t need to seek permission or advice to take such action nor does she need to feel obligated in the slightest to apologize to anyone.
    Not now, not ever.
    It is apparently an unrealistic dream to hope that after all of this time that such an ill patient community would know how to support one another and be capable of discerning who has actually made significant inroads for them. It is also apparently an unrealistic dream to hope that a renowned professional person associated with mental health would have gained more wisdom than this in his long career. Between this display of meanness in the public arena and the equally poor behavior of those on the current political stage, I am once again beyond disappointed by American leadership.
    Please be well Jeannette. Recognize this for what it is.

  22. Well said, Sir. Thank you.
    Sending kindest regards to you, Jeannette & family.
    Support to all who courageously take a stand against the abusive and bullying tactics of others, and advocate for those with ME who cannot.

  23. Katherine Autry says:

    Praying for Jeanette’s recovery! Coyne is out of line, period – completely unprofessional. Why would any of us tolerate his bully tactics? Haven’t we been bullied enough, for God’s sake? The fact that he hasn’t apologized – and that other patients and advocates are “going along” with him and his bully tactics – is a reflection on the disturbing lack of integrity that seems to be prominent today. Doing the wrong thing, or going along with it, to try to reach a particular goal. Bad ethics, usually bad outcomes, in the end. All of that is in no way a reflection on Jeanette. Yes, she is outspoken (and sometimes a little long-winded LOL) but what would we expect from an attorney? She is also consistently and clearly a person of the highest integrity and consistency and there is no doubt in my mind that she has made enormous personal sacrifices fighting this battle for all of us. Shame on those who would kick her when she is down. Even if she had never done anything for us, as a fellow patient we all owe her the respect and kindness we ask for ourselves, knowing how something like that attack can knock us off our feet. Knowing that she is being attacked for standing up for us at great personal cost. I think the next action needs to be a class action lawsuit. How would YOU like to represent us?

  24. Thank you Ed,
    I have followed the advocacy Jeannette has done for her fellow sufferers with much admiration for her tenacity to hang in there.
    I am sorry this man ever entered our lives, I am sorrier still that Jeanette became his undeserved target.
    My thoughts are with you as a family. I wept reading this.

  25. Jacquie says:

    I totally agree with everything Jeannette’s husband has written here, & thank him for doing so. I feel very much for Jeannette & what she has had to endure from James Coyne’s abhorrent comments. I am not surprised it has had such a detrimental effect on her already compromised health. (Even though I have had ME for 20+ years, I’m sorry to say, I had never heard of Jeannette before this unfortunate debacle began – I’m from Australia). I was in shock when I read Coyne’s words. My thoughts at the time were that this person is either crazy, or had waaaaaay too much alcohol to be thinking straight. I expected him to issue an apology the next day. It never happened. For him to put such things in writing, on a forum where the public could see, was appalling, to say the least. His bullying tactics are reprehensible and unacceptable. HE is the one who should be issuing an apology! In the past, I had personally thanked James Coyne for what he was doing regarding the PACE trials. I was extremely grateful to him. Now, because of his disgusting behaviour, no matter how desperate we ME patients are, I want nothing to do with him, & do not want him being my advocate. In my eyes, he has shown his true colours, & is not worthy to represent anyone. He knows the ME community needs him, & is playing on that. I find it sad to see others trying to placate him, because we are so sick and so desperate. I do not condemn them though. Each to their own. But I for one, would prefer to fight my own battles, sick as I am, rather than pander to a bully such as him. Jeannette, I wish you all the very best in regards to your health, and send you my sincere best wishes. Stay strong!

    Jacquie Thearle-Wilson
    Australia

  26. witteringjan says:

    I’m very sorry to hear Jeanette’s health is suffering. Not only is there no excuse for Coyne’s behaviour there also does not seem to be any reason for it. I appreciated Jeanette’s tweet at the time and ‘favourited’ it. When he came out so vehemently against it I thought there must be something I’d missed. That maybe some bigger disagreement had set off the tirade. It wouldn’t excuse it but I thought by finding the reason for his point of view maybe I’d learn something. All I’ve learnt is how terribly he behaved and that he has a history of behaviour I was unaware of. I feel indebted to Jeanette for all she has done and continues to do. I send her my thanks and support and hope her health doesn’t suffer further as a result of this.

  27. Tania Selth says:

    best wishes to Jeanette.

  28. The Walking Dead says:

    Thanks so much Ed. Sorry Jeanette is feeling so badly right now, it’s true our emotions/stress is tied to this illness just like physical activity is. I am so sick of being sick. My heart is wounded right now too, I am feeling defeated. We are to sick to fight, but we have got to keep moving forward. Our government is so broken, I don’t ever think we will get treatment. Sorry, I am a Debbie downer!! I have stepped away from reading to much information for about 6 months because it makes me so upset. Hope your feeling better soon.

  29. I am so sorry you are having to go through this! I am vexed and confused by his behaviour. I have read your blog and seen your tweet and can not see fault in it. I think this is a time for the ME community to stick together and support each other and keep on fighting the system, alone if necessary. I sometimes think the most rational people in the world and the most mentally healthy are ME patients and it’s the Doctors and Psychiatrists who need CBT.

  30. I am very sorry to hear that Jeanette’s health has deteriorated as a result of this sad business. Though there have been differences of opinion over tactics, I am sure she was acting in what she truly believed to be the best interests if the ME community which she has served selflessly for so long. She in no way deserves to suffer like this. My heart goes out to you both.

  31. I am so grateful for everything you and Jeanette have done for the community. I had no idea how much you were doing behind the scenes (and I am sure there is far more than even what you have mentioned). I know how destructive this level of conflict can be for PwME and I hope she has been able to take the distance from this to protect her health and that her treatments go well.

    Personally, as destructive as this has been, I wish we could forget Coyne and put this behind us. I don’t agree at all with his behavior or with his targeting of a completely innocuous tweet. (I do think the destructive infighting/innuendo is a real problem in the community but a problem he erroneously conflated with actual activism). I would love to see us take the weekend to relax, regroup, and move on to something else next week. There are so many big, important issues and not nearly enough capacity to address them. If he isn’t going to apologize or if he is going to keep to fanning the flames, rather than continuing to fight Coyne, I think we need to collectively ignore him, move on and get back to the real work.

    • Ellie Strand says:

      Hear! Hear!
      Or do I mean Read! Read!

    • Ed Burmeister says:

      Thanks, Jen, for your supportive words regarding Jeannette’s efforts on behalf of the ME community and you concern for her health.

      I have to say, however, that I am singularly disappointed in your comments on the Coyne matter. You state that you “do not agree at all with his behavior or with his targeting of a completely innocuous tweet.” I would hope that someone in your position and with your following in the community would condemn, without qualification, his behavior rather than simply not agree with it. Further, your characterization of the target of his attack as being a “completely innocuous tweet” is trivializing his behavior and demeaning the import of Jeannette’s advocacy. He did not target her tweet as such, he targeted her individually and specifically, including his abusive characterization of her as a “sick, crazy lawyer,” and urged the community to stand up in opposition to her. Her tweet was not “completely innocuous.” It was a justified criticism of the appointment of Walitt as lead investigator on the NIH study, something almost all of the ME community has found appalling and highly concerning.

      The rest of your comment is a not-so-subtle plea for Jeannette to suffer is silence in this matter, to take the abuse, so we can move on and get back to the “real work.” I address this silencing issue in my blog post. What is so disheartening for me personally is that a prominent figure in this community who has professed a desire to have constructive discourse and activism on behalf of this debilitating disease is willing to simply drop any criticism of Coyne’s behavior, much less any accountability for his abuse, which was specifically designed to squelch Jeannette’s advocacy and to enlist others in this effort. If this is your view of the proper way to handle this type of situation, I think you need to reconsider your self-described approach to ME advocacy. Further, if you sincerely want the community to get past this constructively, then, frankly, a strongly worded, widely circulated and unqualified condemnation of Coyne’s behavior by you would be the best way to do it.

      • Thanks for saying this Ed. I’ve found that Coyne’s attempts to get me shunned and his attack on me and my integrity has been trivialised and defended as well, even to the point people have attempted to explain it by falsely insinuating I was harassing or abusing him, when it’s patently clear I was doing no such thing. Jen – I’ve found you claimed Coyne was wrong about Jeannette but right about the problem (whatever that is supposed to be). Will you now acknowledge that I and other advocates were also attacked by Coyne, and that his attempts to get me and Jeannette shunned by the community were and remain serious problems for the community to consider and condemn? Or are we somehow to be ‘collateral damage’?

      • Ess says:

        I agree completely with what you are saying, Ed. Coyne targeting an ‘innocuous tweet’ — that’s all this is?? are you kidding me — looks again much like ‘The Emperor Has No Clothes’. The target is Jeannette — Coyne targeted Jeannette maliciously and purposefully. NO — this will not be swept under the carpet. The target is also others who are speaking up and asking questions — we are then labeled for doing so — and written about in forums as trolls and attackers. There is something rotten in the state of Denmark.

      • wildaisyfl says:

        Thank you, Mr. Burmeister. If the community wants to get past this constructively, then everyone needs to make a strongly worded, widely circulated and unqualified condemnation of Coyne’s behavior. There is no longer room for people to defend Coyne. James Coyne’s attack on Jeannette was so outrageous, so wrong, that there is no middle ground left. Anyone who wants effective ME advocacy needs to demonstrate this desire now and stand up for Jeannette. Jeannette Burmeister is the most effective advocate for ME I have seen in thirty years. We need to defend her now.

        Patricia Carter

      • Ed – I am sorry if my language (“don’t agree at all”) was not strong enough. I do condemn Coyne for his actions – he was behaving horribly toward Jeanette and many other patients.

        We should support Jeanette, I just don’t think *he* is worth our attention, especially when there is so much important work to do.

    • Carrie says:

      It would be immensely difficult to move on to something else next week, knowing Jeannette will still be fighting to regain her health.

      You are right that there are many big, important issues we need to address. This is now one of them.

  32. Lynn Twohey says:

    Thank you for writing this. I have shared it and hope many read it. It was extremely upsetting what Coyne said and did to Jeanette and those in the group that night. It was so upsetting I left the group […] . I honestly thought he was drunk or high or having a mental breakdown. He was so unreasonable. He is not a leader we need if he is willing to hurt those that are sick and pouncing on an advocate that has done so much to further our cause.

    Thank goodness Jeanette has you and her family. She also has a community that is behind her as well. That includes me. Please give her a hug, I wish I could do more.

    Lynn

  33. jimells says:

    Professor Coyne is associated with at least one academic institution. I wonder, what does his institution think of their public representative attacking extremely ill people and making their illness worse?

  34. Laurel says:

    Thank you for such an informative post, Ed. Jeannette is very good at holding people’s feet to the fire and making them accountable for their actions. Unfortunately, this is bound to trigger dysfunctional defenses in some emotionally immature people that results in them acting completely inappropriately. I’m so sorry that Jeannette is the recipient of these tantrums. I consider her our heroine and am extremely grateful for the extensive work she has done on our behalf. I hope Jeannette knows that we love and support her, and you and Miss A. as well.

  35. Ellie Strand says:

    Thank you for writing this on the behalf of Jeanette and all of us. I support her 100% and wish nothing but rest and recovery for her. As I think Rodney King said, “Why can’t we just be kind to each other?”

  36. I’m afraid coming from the UK, I had heard neither of Coyne or Jeannette. I had seen the video of Wallit talk on Fibromyalgia and ME/CFS and it shocked me and left me very depressed that someone who thinks they are both psychological illnesses would be employed by NIH. Coyne chose, for some unknown reason, to post Jeannette’s tweet to NIH and his evaluation of it on Invest in ME’s Facebook page. IiME is a UK charity so most of us are British. I read Jeannette’s tweet over and over trying to find the ‘abuse’ in it. After seeing Wallit’s video I thought it was very restrained. Coyne started ranting at us that we needed to apologise to him and then started cursing us. We were totally bewildered not knowing who he is. I’m very sorry, but not surprised, that Jeannette is feeling so ill. The argument upset me terribly and I was much worse and crying over nothing the next day. Whatever he was trying to achieve (discord between the US and UK ME world?) has backfired. We’ve all seen Jeannette’s measured response and he comes across as aggressive, abusive and quite frankly insane. I thank Jeanette for all her work and hope that her health improves soon.

  37. johnnydme says:

    I was afraid something like this might happen given how gratuitous and vitriolic his attack was…for no reason apparent to any of us.

    It is extremely saddening that he has not yet apologized for his behavior. If a public apology is *just* too much then through a back channel… However I’m optimistic that his attack won’t split the ME community (such as it is) in two.

    It’s true there have been some desperate voices seeking to find anyway, anyhow, to absolve Coyne including blaming Jeannette and trying to analyze her tweet word for word.

    However, as far as I can tell, this is the small minority, and especially noticeable as such when I consider how much patients in the UK and Europe have to lose from the continuing use of PACE as a public health standard.

    Wishing that Jeannette will feel better soon. I can’t imagine anyone in our ME community deserves it and certainly *not* someone who has made so many important contributions at great personal risk.

    Kind Wishes to you Both.
    johnduncan

    • Jacquie says:

      I agree with all you’ve said.
      Coyne’s behaviour was bordering on the insane. I could find no fault with Jeannette’s tweet either. It was as if a maniac had been let loose on the keyboard. I was shocked & disgusted by his behaviour. I do want to say that PACE as a public health standard will also affect all those ME patients in Australia, so we are as much affected by this as UK, Europe & the USA. I hope & pray we will bring an end to any form of treatment that involves CBT & GET, with or without Coyne. Again, my best wishes for a speedy recovery for Jeannette.

      • johnnydme says:

        Thanks for your reply Jacquie. His behavior was completely over the top–in 6th grade you’d get suspended for that sort of thing.

        Sorry I forgot to mention you Aussies, land of vegemite sandwiches, and the Kiwis too. I stand corrected the whole world indeed has much to lose from the continuance of PACE as a public health standard–as has occurred to this point.

        So I agree also that while it’s completely understandable many of us are desperate on this PACE issue; we shouldn’t let that cloud our moral judgements, especially when a fellow, and especially prominent ME patient and advocate is attacked in such a vitriolic manner.

        Also as some have said earlier we can’t ( as far as I am aware ) force Coyne to apologize but we can support Jeannette and say this behavior is not acceptable.

  38. Anne Keith says:

    […]

    Like many others, I initially had to think that his account has been hacked to spew such unprovoked and unwarrented behavior, especially as Collins certainly wouldn’t expect warm and gentle fuzzies from a lawyer who recently trounced the NIH in court. Then I assumed he would apologize once he sobered up and crawled out from wherever he had gone to sleep it off. Now, in light of a week of deafening silence, the only remaining explanation for such unreasonable and pointless behavior (what motive could he have or what could he possibly have gained?) is that his problems run significantly deeper than a “just” bender.

    I’m sorry Jeanette was on the receiving end of such insanity. I hope she listens to all the support and releases Coyne’s negativity so that her health does not further decline.

  39. RobinHood70 says:

    I’m sorry, but I disagree that Jeannette’s post was within “acceptable standards for reasonable advocacy”. It was an insult and an accusation. That’s not advocating, it’s attacking, and as an ME/CFS patient myself, I believe this sort of thing has to stop if we’re ever going to be taken seriously. Otherwise, we play right into the psych lobby’s position that we’re a bunch of nutcases. Reasoned debate is fine, but attacking someone and implying that their entire agency is shoddily run because of a single person that they chose to have involved (albeit in a key position) is neither reasoned debate nor advocacy.

    Do not take this as defending or excusing Coyne’s behaviour in any way, however. The language and aggressive behaviour in his response was completely inexcusable.

    • Ed Burmeister says:

      You are certainly entitled to your opinion regarding the nature of Jeannette’s tweet. I see no need to respond in as much as both Jeannette’s and my posts address this very issue.

    • joe kane says:

      It’s amazing the amount of times I come across disabled people like anonymous RobinHood70, who internalise their own oppression and blame establishment crimes against them on fellow suffering patients.

      No disabled person is responsible for medical human rights abuses against ME patients except the medical establishment and the government.

      To actually imagine that patients and disabled people should behave themselves otherwise doctors will stop treating them, and medical scientists will stop looking for treatments and cures is the stuff of George Orwell and Franz Kafka novels. Disabled people with ME exercising their right to freedom of expression translates into thought crimes and patients can be punished accordingly by doctors.

      Imagine the medical establishment refusing to look for a cure for Ebola because an Ebola patient sent a sarcastic tweet to a doctor or whose politics the doctor disapproved of?

      But, of course, patients being held to account, to a standard of morality greater than medical ethics, is very much part of the upside-down world of Orwellian-Kafkaesque biopsyochosocial medicine which ME sufferers seem to be forever trapped inside. It is patients who have to make sure doctors are safe from harm, and are answerable if they aren’t. It is patients who must keep a smile on the face of their oppressors else feel the lash of medical mistreatment and neglect

      • RobinHood70 says:

        I’m curious where you see me saying any of the things that you seem to think I have. What I said was that attacking and belittling people does not fall under my definition of the term “reasonable advocacy”.

        To put it in a way that perhaps you might understand better, if all anyone ever does is shout at you, how long before you stop listening to that person at all? If they only post negative, derogatory posts on your wall, how long before you block them?

        I don’t advocate that we shut up, nor that we try to protect doctors from harm, as you seem to think I do. I advocate for reasoned, intelligent advocacy, advocacy that points out false assumptions, weak research, and working with allies to promote what we know to be true. We’re far more likely to accomplish what we want by acting like the Vincent Racaniellos of the world rather than the (at least recently) James Coynes of the world.

        Disagreeing with someone who practices a form of advocacy I cannot support does not mean I want to throw all advocacy under the bus.

        • joe kane says:

          So you think the Wessely school is using reason when it claims the victims of its decades of abusive psuedo-science aren’t using “reasonable advocacy” but are harassing them? Feel free to provide evidence of such harassment.

          Since when has any code of medical ethics demanded patients behave in a certain manner before they receive proper medical research and treatment? You’re objections to patients behaving exactly like everyone else does in a western liberal democracy seems to be based on the idea that doctors are justified in punishing them if they do. Which other members of society get medical research and medical treatment withheld because those in authority don’t like their public behaviour?

          It’s a laughable idea that a few tweets can be responsible for how billions of dollars of government money gets spent never mind that chronically ill people can be held responsible for their own illness because they don’t want to get well otherwise they’d be nicer to doctors. If all I had to do to change government policy, diverting vast amounts of public funding to my favourite causes, was send a few tweets I’d have done it by now.

          • RobinHood70 says:

            It’s amazing to me just how much you’re reading into what I posted. I’m not going to continue to engage with you because it’s obviously going to be twisted no matter what I say. I object to people attacking doctors and agencies that are trying to help. I don’t think it’s helpful to our cause. Clearly many others think differently, and that’s fine, but hopefully, the fact that not everyone agrees will make people think twice about how they’re representing themselves. That’s all I came to say, and that’s all I’m going to say.

            • joe kane says:

              You’re not going to continue because you have no evidence that doctors are being attacked, and if there’s no evidence of harassment and abuse then your ridiculous claims that 30 years of abuse and neglect aimed at ME sufferers, by the scientific medical establishment, is because they’ve only themselves to blame because of their behaviour falls to pieces.

              Clearly you haven’t paid attention to any Jeanette’s work of uncovering the lies and deceits of the American scientific medical agencies who, as proven beyond a doubt by her, couldn’t care less what patients say to them, whether they’re being reasonable or not.

              I just find it fantastic that despite all the evidence to the contrary people like you seem to think ME is some great unsolved medical puzzle which has baffled medical scientists and doctors for nearly 30 years, who just can’t seem to figure it out.

              The reality is that for 30 years the medical establishment has been engaged in a campaign of scientific and medical abuse against a community of marginalised patients whom, if there was any justice in this world, would be entitled to huge sums in compensation each for what they have been subjected to over the decades by a bunch of pseudo-scientific quacks and charlatans.

  40. Carrie says:

    I remain outraged nearly a week after Dr. Coynes’ inexcusable attacks on Jeannette and others.

    Indeed, Dr. Coynes has had enough time to apologize. Why hasn’t he done so?

    Furthermore, I find it revealing that certain high-profile “advocates” have not publically posted a word about these incidents. Are they afraid of offending someone in particular?

    Jeannette and Edward, I deeply appreciate your advocacy and the sacrifices you have made for ME patients. You have my respect and admiration. I hope and pray that Jeannette’s health improves.

    ME patients know better than anyone the toll this incurable illness takes on our bodies and our lives. This makes it all the more horrific that any patient would viciously attack another—knowing the inevitable outcome on the patients’ health–on the say-so of a man with NO track record in this field.

    I used to think we could all agree to disagree because we all wanted the same thing. Not anymore. Recent actions and inactions of certain patients and advocates have forever changed my perspective. My support *and my dollars* will steer clear of those individuals and groups whose values do not align with my own, and I remain even more committed to holding authorities’ feet to the fire for the research and support patients deserve. That is the only way any progress will ever be made.

  41. judgingjudi says:

    Thanks Edward for taking the time to write such a wonderful blog regarding the negative, abusive treatment that your wife received from James Coyne. I send my best wishes her way for a speedy recovery. Take care of yourselves and rise above it. This too shall pass!

  42. ShyestOfFlies says:

    I did not know Jeannette by name before today when I read about this directed by a forum. I read her post on Walitt and appreaciate her passion for advocacy that clearly comes through her writing. I can’t say I agree with everything she’s said because I am simply unfamiliar with her writings as I am new to this community as my illness onset (which may or may not be me/cfs) was in September 2015. It would make sense that advocates rarely share the same stance on all points however.

    To quote: “[Coyne] stepped in and demanded, in effect, that the patient community condemn Jeannette’s tweet, insist on an apology from the community for the tweet and ostracize advocates like Jeannette, calling her a “sick crazy lawyer,” having a “history of being abusive towards reasonable informed Americans” and posting a “nasty and abusive tweet.” He demanded that the patient community step up and “stop the abusive crazies” or he would stop helping with attempting to obtain documents relating to the PACE trial. When many questioned him on this, he called them names (e.g., “delusional”) and told them to “fuck off.””

    Just as an informative tidbit from someone who has been genuinely abused… Often abusers, manipulators, and just rude people will perform a “reversal” which is essentially when they turn around and insinuate that the person being abused is the one being actually abusive, not them. It is a diversionary tactic meant to gaslight the victim(s) and persuade a bandwagon propaganda attack on them from their fellows. Not that this is meant to give a free pass to those who piled up after Coyne’s initial attacks, they are completely responsible for their actions as individuals. It is clear to someone outside of this an inter-community or inter-group situation (who holds a decent amount of common sense) that the situation is bein manipulated by the actual abuser/manipulator and who is the victim. It does not help that many who manipulate suffer from severe personality defects, which often include unstable outbursts of anger and lack of empathy.

    The realm of advocacy and social justice should be a (reasonably) safe haven for abuse survivors, but unfortunately where you see perceived targets you often see abusers… Who find they can manipulate themselves into positions of power and or respect.

  43. dro2016 says:

    I wrote a comment already I don’t see it here and it may be lost. It was probably too long anyway. In case it did t got through, let me sum up points
    1 this is outrageous and everyone of us need to scream that from the rooftops
    2 Coyne […] provides nothing g more than spin but because he gives the answer that so many want to hear – “it’s all in their heads, pat their hand, tell them that everyone feels pain and so their pain doesn’t really matter and send them on their way”. Even trained professionals will convince themselves that the reason what this guy says makes no sense is because he is so brilliant, they just don’t have the ability to understand the gibberish, and when he comes to answer they like they are all the more convinced he must be right
    3. Those of us with ME and/CFS better quickly become warriors and learn to fight together against Coyle and his “fans” – I suspect there are enough of us to make quite impression. Even if the best we can do is sign a petition and share it, we all have to do something. And our first step is to show our absolute commitment to Supporting Jeannette (I’m quite tired and my typing is getting bad – sorry). I hope that everyone one of us feel that an attack on her is an attack on all of us.
    4. I stand with you Jeannette I am outraged and furious that have been targeted j. This way. I am here to do whatever I can to push back against Coyne and those who long with him. I’m not really anybody, but, despite the multitude of obstacles my body has created for me in sickness, I am still the same passionate, determined, highly educated and intelligent (albeit somewhat lost in a fog a good deal of the time) scholar who is willing to give whatever I can in support of Jeannette and all of us suffering from a society that will not help us.

    • jimells says:

      “I hope that everyone one of us feel that an attack on her is an attack on all of us.”

      Amen to that.

  44. ian says:

    I too found myself baffled by some advocates and patients straddling the fence on this. To me it was a no brainer. Good thing for me with having only half a brain and all that even I could see that these attacks from Coyne are indefensible on any level.

    I was not familiar with Jeanette’s work before this and want to send my love and thanks for all you do. Take good care of yourself so you can continue speaking truth to power.

  45. Utting Wolff says:

    Ed, Jeannette, my heart goes out to you. Thank you, Ed, for your post.

    Earlier this week I wrote that one can condemn Dr. Coyne’s behaviour unreservedly and support him in his science-related endeavours (in which I am beginning to lose faith as a fellow academic, as insulting other scientists will have alienated most in academia and clinical practice by now). Unfortunately, many people assume they have to choose between the one thing or the other. For some reason, some seem desperately afraid Dr. Coyne might abandon his quest for scientific clarity, which is an unfounded fear, as no self-respecting, genuinely interested academic would stoop so low as to tie his/her work to the perceived behaviour of a group of people. Still, that’s what far too many people feared when Coyne fed them the tweet-nonsense. Strong, dedicated women were quickly identified and viciously targeted as troublemakers.The very women who are now identified by other ME sufferers as destructive forces are the ones who have, over the years, been providing ME sufferers on both sides of the Atlantic with substantial factual input. It is these very women who have spoken truth to power, recorded the history and politics of ME, challenged, educated and given generously of their time, health and money.

    In other words, vocal, dedicated, and courageous women are not the problem, they are part of the solution. As such, they have every right that their continued critical voices be heard and their concerns be taken seriously.

    Peace can and will prevail when the victim blaming, the finger-pointing and the vitriolic, bordering on the defamatory, comments and behaviour, incited by Dr.Coyne’s awful actions, stop. The abused and wronged party has every right to expect an apology, not the other way round. It is hard enough to lose one’s former life to this disease, for some people to expect of Jeannette to meekly accept attempts to strip her of her dignity and professional expertise so that the community has a sacrificial lamb for the abuser is, frankly, beneath contempt.

    To fight the institutionalised abuse of ME sufferers, we need knowledgeable, courageous people who dare take on government bodies by challenging them on the wording and implementation of policies and the technicalities and legality of their proceedings. The scientific research we need into our disease and the lack of funding are intertwined with how government bodies fulfil their obligation towards us, so science alone will not save the day as science funding is a deeply politicised minefield. As a consequence, our struggle has to be a multi-disciplinary effort from the ground up, branching out into a multitude of fields and complex issues. There is no such thing as ‘let us now solely concentrate on PACE and move forward’. People need to understand that there is complexity which requires more than one, linear focus. We must make it our business to understand exactly what is happening when scientific communities are firmly entrenched in paradigmatic schisms in which unsuspecting sufferers get caught, year after year.

    Unveiling institutionalised injustices are not soft, cuddly tasks. This requires extremely tough and draining work behind the scenes. Premature boasting in public about planned future achievements is not Jeannette’s modus operandi. To conclude, Jeannette gives and gives, without having taken once. Instead, she has paid legal fees out of pocket, the rent and airline tickets for other advocates. I am relieved her husband finally chose to reveal some of these background facts as this taking-for-granted of Jeannette (and other advocates) has become unbearable to witness, especially in light of recent events.

    In my opinion, inclusion and mutual respect are the way forward for ME sufferers. apologia for the perpetrator(s) and coercion into submission of the wronged party are not.

  46. Jacqueline Robinson says:

    She is an ME superhero and shall remain that in our community. Her character speaks for itself. She will never be held in anything other than the highest regard, in my book.

  47. Florence says:

    Sorry, Jeanette’s blog post about Walitt was an attack. What do you call this?

    “Walitt’s claims lack even an inkling of science. In the demeanor of a hokey cult leader, he lays out his horrifying *beliefs* about fibromyalgia.”

    Calling him a cult leader? Really? Call me a cult leader and you would get worse than what you experienced from Dr. Conye. If she throws statements like that out on the internet she should realize there will be backlash. Half of being sick, and I have ME, is knowing when to fight and when not to.

    The truth is Walitt knows that ME is an illness, but Jeanette takes what he says out of context. In fact Jeanette’s worsening symptoms actually prove Walitt’s ideas. That MENTAL STRESS effects us physically. That is a psychosomatic disorder, it does not mean it is made up, it means it is created by mental stress.

    Walitt said in that interview; “EMOTIONS EFFECT OUR SENSATIONS.” and there is a biochemical reason for this. That is what Jeanette is experiencing right now!. He is also saying that Doctors do not understand this yet. He says there is an underlying biology (ie, not in our head) but that predisposes us to psycho originating sensitivities.

    That truth is why mediation helps me so much. It changes my psycho and it effects my somatic.

    Everyone needs to take a breath and step back and mediate on this! Walitt is using complex language that should not be taken superficially.

    • Ed Burmeister says:

      I take it that you have no objection to Walitt being appointed by NIH as the lead clinical investigator since you seem to deem that appointment as not worth the community’s fight. Jeannette explained in her blog entry why she and almost the entire community strongly disagree.

      You seem to consider it justified that a self-appointed new “leader” of the community attacks and attempts to ostracize an accomplished advocate for the sole “offense” of having called out the government. One has to wonder what you think an appropriate punishment for the ACT UP movement would have been.

      Jeannette posted a link to the entire Walitt interview, she transcribed it in full at the end of her entry and reproduced entire paragraphs when she analyzed the specific language Walitt used. That is the opposite of taking things out of context.

      For the record, Jeannette did not call Walitt a cult leader. She said his demeanor was that of one. Every unbiased person who watches the video would find that hard to argue with.

      I took note of your threat that Jeannette would “get worse from [you]” than what she got from Coyne if she called you a cult leader. Given how extraordinarily disproportionate and abusive Coyne’s conduct has been, that is a disturbing and alarming statement.

      You are making patronizing and biased assumptions as to the cause of Jeannette’s current crash. She had to physically overextend to a degree that would cause a significant worsening of symptoms for every ME patient with her severity level. In order to control the damage done to her reputation by Coyne, she had to monitor and copy the Facebook threads in which the verbal assault was taking place over hours, write a long blog entry on the heels of the similarly long entry she had just written about Walitt, monitor social media to capture the additional attacks on her, etc. That much activity far exceeds what Jeannette can safely do given her health and the nature of ME. Of course, abuse worsens the health of very sick patients. It affects even healthy people. Jeannette would be the last one to argue with that. I am baffled that anybody would use that fact to justify Walitt’s beliefs, which include that patients are meant to experience their physical symptoms because the symptoms are “normal” and that not treating patients isn’t harmful to them. Furthermore, abuse exacerbating the symptoms of sick people s very different than causing a disease.

      Most importantly, your explicit support of Walitt’s position that ME is a “psychosomatic disorder” sums up your position nicely. Many in government and all insurance companies providing disability coverage will applaud your support.

      Final thought. I can’t help but be curious as to your identity. The timing of your first appearance as “Florence” or “Flo” in the online community, as well as the nature of your comment, raises questions about who are you. One can speculate….

      • Coincidentally, I was thinking the same exact thing. This “Flo” could have pulled it off, until she/he/it made one fatal mistake: claiming “…and I have M.E….” No way in hell is that going to sell. Not because she disagrees with Jeannette; but the attitude that this “person” reveals with every single word is quite apparent this “Fluey” does NOT have M.E.; CFIDS; CFS; SEID;…(pick any one). Also, would have been more believable if it was toned-down a few notches; plus the fact that no other topic illicites more emotion than this illness, this person uses it in all the wrong places.

  48. Bill Clayton says:

    I will leave this short as I’m not having one of my better days ! My head’s a shed and feeling pretty punch drink without drinking any punch……I’m so sorry to hear of how this episode has affected Jeannette, and am so pleased to read your words in her defence. This has helped people to understand what was actually said, as our illness stopped some from trying to join all the dots of the saga together to then consider commenting. I for one still cannot understand the Coyne reaction and await in hope for some clarification for his side. I hope you don’t mind if I add an intro to your comments above to my ME website at http://www.York-ME-Community.org with a link back to you so that others might read it here. Best wishes to you both.

  49. Pingback: Standing Up To Coyne And Against Unfair Treatment Of ME Advocates – The York ME Community

  50. Ella Peregrine says:

    Hi Ed, Hi Jeannette,

    Long time reader, first time caller 😉

    Ed, thank you for your post and the comments you’ve made as people have responded. It so obvious that many people don’t really know their ethics, and that you actually do. It is such a shame that you have been pushed to the point of defending Jeannette this way – but I’m thankful for your clear and strong voice in doing so. I’ve been at such a loss for how to say it, and you do it admirably.

    This whole situation has really given me insight into who people are in this so-called community. We have so little cohesion that such an obviously uncalled-for attack is a matter of disagreement, and that is ample evidence that it won’t be hard to divide and conquer. The people who have stood against the efforts of government agencies and institutes to bury this disease are gradually being picked off as their health declines beyond the point of being able to sustain public speech. The less sick members of the community seem more interested in preserving some type of “good” (i.e. silent) patient reputation than in actually understanding the depth and pervasiveness of the machinations of the agencies in question and their cheerleaders.

    It blows me away that in the aftermath of Coyne’s attack, Cort Johnson is now taking things so much further with his dishonest claims about Jeannette’s advocacy, and it’s going largely unquestioned/uncontested. He’s using his public role, with his personal forum, his influence and following at his previous forum Phoenix Rising, and as a representative or voice of the Simarron foundation, all to do everything he can to silence the most accomplished and effective advocate this disease has had for years. It’s stunning, and what gets to me the most is the way that all these people who keep saying we should not divide the community seem perfectly willing to divide the community, as long as their choice interests have some apparent support.

    In all directions, this morass evidences the same things – loathing of patients, of women who dare to speak up, of people who have the terrible misfortune to be sick with a disease the medical establishment has chosen to not just ignore but abuse. I suppose one might find a bit of satisfaction that they came after Jeannette because she has been so effective. It’s just utterly unjust that the attacks then triple the already high price she pays as an advocate. The piling on of negative voices is really frosting on the urinal cake.

    Some claim these attacks weren’t orchestrated, that they are the organic result of personalities, differing opionions, etc. That seems naive in the extreme. But isn’t that the case, that our community is full of people who would rather speak out in naivete than actually witness and name the harm that’s being done. Is it fear of things getting worse? Does that even make sense?

    It appears people with ME are at a very treacherous crossroads in the evolution of the larger cultural relationship with this disease. With the claimed sea-change at the NIH, unfortunately we’re witnessing psychologizers being placed in positions of power, and an utterly tone-deaf approach to the disease process. The danger here is that whatever comes out of this study will have such far reaching effects that it will never be withdrawn, no matter the harm it does. I would love to be wrong. I would adore to even believe for one moment that the NIH is going to study the actual disease rather than their pet symptom “fatigue.” Signs are not good.

    I’ll point out that these attacks (from JC and CJ) both come back to calling out Brian Walitt in his role in the NIH intramural study. Walitt doesn’t belong there because of what he’s published, what he’s said, what he clearly has believed and built his career on for many years. Yet he remains on the study, which is tantamount to putting a rapist in charge of a rape crisis center. Let me be clear, I am not accusing him of rape. I am saying his views on the disease and his documented belief that not treating people with fibromyalgia doesn’t harm them, along with his conflation of FM with ME and CFS as somatoform and “purported” disorders, all spells serious danger for participants and anyone the study ends up affecting, which could be all patients in the future.

    Jeannette, you have sacrificed so much in your efforts to bring accountability to the government’s dealings with us. It is an utter shame that some people refuse to acknowledge and appreciate the work you’re doing, and instead attack you.

    On the other hand, I’m compelled and glad to add my voice to those who support you, who see at least some of what it takes to do this type of work under the immense burden of this disease, and who know that it’s something not everyone can do. You have brought your immense intelligence, your legal knowledge, your life experience, and your deep and abiding concern for the vulnerable to bear in ways that only you could. Priceless. Irreplaceable. Amazing. Thank you, from the depth and breadth of my heart and mind, for the inspiration, the hope, the clarity, and the ongoing strength you have brought us. I hope the effects of this are short-lived, and that you’ll be able to regain your strength soon.

  51. Pingback: Has the “Coyne of the Realm” been devalued? | Thoughts About M.E.

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

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