Heat of Battle

In my previous post relating to the controversy surrounding the NIH study, I wrote that disagreements were only to be expected. I still stick by those words, yet I – like many – have looked on in some distress since then as angry reactions have escalated to a potentially catastrophic extent, threatening a very serious setback in our battle to expose the PACE trial and win recognition for the true nature of ME.

I myself do not believe that anything any patient has said about the NIH study has been more outrageous than the NIH’s own decision to appoint Dr Walitt as study director. When you put this in the context of the promises made about the study after all the years of neglect and betrayal it is scarcely surprising that some patients have got very angry or that bitter disputes have arisen about how best to respond.

But we must not lose sight of what we hope to achieve. David Tuller and Professor James Coyne have built on years of painstaking work by patients to put us in reach of finally exposing the slick tricks of the PACE trial. It will be tragic if we lose that chance because of a few angry exchanges in the heat of battle.

I think we need to accept that Professor Coyne is the way he is. He fights hard and says what he thinks in no uncertain terms. That’s what makes him such a fearsome opponent for those who are ranged against us. But if we ask a lion to fight for us, we can’t be surprised if he roars in our direction from time to time. If that weren’t his essential nature, he wouldn’t have taken on this battle of ours which nobody else would touch. He has been willing to stand up for truth on our behalf. We need his support and he deserves ours in turn.

No one deserves to have been upset over this. All that anyone was trying to do was to speak up in whatever way seemed appropriate to them to achieve our common goal of true recognition, research and treatments for this devastating, misunderstood, neglected condition. I am sending hugs to James, to Jeanette Burmeister and to everyone else who may have been wounded by what has been said. Let us channel our anger instead against the true enemy, using that most effective weapon of all: cool, calm, reasoned argument. We have truth on our side. Let’s speak it in quiet insistent voices.

I hope that these few words of mine will help to restore some peace in some small way. But if I’ve misjudged and upset anyone, I hope you will forgive me. These are prickly times, and it’s not always easy to walk with sufficient care. I’d like to end by quoting a message which Michael Evison posted on the ME Alliance Facebook page, where some of the ructions occurred. I agree with Michael’s words 100%.

Admin statement: In view of the unfortunate situation that has blown up in some parts of the ME community over James Coynes comments and the NIH. I have contacted James about our views on the situation. The ME Alliance admins are not prepared to be made a part of this catastrophic fracture in the anti Wessely forces. 

Nothing, but nothing at all can be more valuable than beating the Psychiatric lobby, who have plagued ME for the last three decades. There must be a way to pull back from the edge, that so many seem to be hell bent on charging over. 

I don’t think anyone has done so much work to bring down the Wessley view on ME, on the technical level that we are unable to reach, than Tuller and Coyne. Please, can all sides, think again and keep our unity against the real enemy. 

This is a marathon, not a sprint and until this unfortunate situation, seemed to be firmly going our way.

All posts referring to this dispute have been removed. All future posts will be monitored until a normal situation returns.

Too many sick and vulnerable people are being caught up in this unfortunate dispute, that is driven by people who are obviously not as ill as the majority who take part in this facility, as an escape from the stress caused to them by the Wessely dominated health services, media, establishment ME charities etc.

Nothing is more important that removing the destructive influence of the Wessley lobby from the ME world! – Michael Evison

15 thoughts on “Heat of Battle”

  1. Thank you, Mr Spoonseeker.

    We really do, as a community, need to keep our eyes on the prize, which is the exposure of the bad science of the PACE trial. We all want the same thing, even though we may disagree on how best to get it, and we can’t afford to be divided.

    I also hope for an outbreak of peace, reflection and future cooperation for all concerned.

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  2. Very well said, Mr Spoonseeker. Thank you for articulating so well many thoughts that I would struggle to colate and write coherently. Unity is vital – “peace, reflection and future co-operation” – yes, absolutely.

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  3. I’m very sympathetic to the wish to be non-confrontational, and to occupy a conciliatory middle ground. However, you have to be very careful that in doing so you don’t enable bullying and injustice. I think that to characterise the behaviour that has been seen, as lion-like and needed, is in fact enabling, nay glorifying, a mixture of bullying, sheer egotism, and highly questionable manoeuvring. This is not Aslan leading us into battle. I believe that principled advocates should and will continue the work from here. After all, they never stopped.

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  4. I suppose I’m just a realist, Elsie. James Coyne behaves the way he behaves. I didn’t intend to glorify it, but it’s useful when he’s on our side. To be honest, though, Jeanette’s tweet to the NIH Director could be seen as bullying. Bullying of the strong by the weak, so less objectionable for that, but the hectoring tone was intended to antagonise. Was it really necessary when talks are already planned? I don’t think so. I didn’t like her tweet but I certainly wouldn’t have criticised it in the OTT way that Coyne did of course – and I understand the anger and frustration that lay behind Jeanette’s tweet – I feel it too. All I’m saying is things are complicated and to suddenly label James Coyne as a ‘bad person’ is an oversimplification – furthermore an oversimplification that doesn’t serve us. It’s all a mess – all I’m trying to do is to focus on how to get from here to where we want to be: recognition, research and effective treatment for ME. Not that I would have started from here in the first place.

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  5. So we condemn the weak for bullying the strong in order to retain the questionable services of the strong who bullies the weak / everyone?!
    I honestly don’t want to argue because I so appreciate that we are all taking this in at different rates, having witnessed different parts of this, with access to different info, and in different ways, and hopefully we ME patients can take a bit more care of each other than has been taken of us. But I really feel that we fail to be clear-sighted about this at our peril.
    I can’t seem to paste the link to Jeanette Ketterle Burmeister’s own blogpost about this, and I don’t want to detract from your own thoughts, but if people can find it for themselves it will throw more light on what’s been happening. Wishing everyone peace and rest.

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    1. I certainly don’t *condemn* Jeanette for that tweet. It wasn’t one I would have sent myself but in no way did she deserve the OTT reaction she got from James. She sent it with the best of intentions, I’m sure. I’m not sure it helps to go over what happened but I’ll post in the link to Jeanette’s blog below so people can see for themselves if they wish. Thanks for getting in touch, Elsie. I wish you peace and rest too.
      http://thoughtsaboutme.com/2016/02/29/has-the-coyne-of-the-realm-been-devalued/

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  6. I feel very strongly that we should not reward bad behaviour. It doesn’t matter who the author is, a foul-mouthed tirade is not strength, it is just foul-mouthed. This sort of behaviour doesn’t help anyone with ME/CFS. One OTT tweet in response to Jeanettes’s might have been forgiveable, but a whole string of expletives directed at anyone and everyone is unacceptable. In internet social media we stand or fall by the words we write. Your own words are moderate and thought through. Coyne’s words were not. I cannot support such behaviour. I appreciate the good work he has done to date about PACE, but that does not make his recent words OK. Jeanette may or may not have overstepped the mark. Some clearly think so. But two wrongs do not make a right. Also his suggestion that we, as a community, should somehow be policing what an individual puts in a tweet, is extraordinary. You do not come to me to approve what you write in your blog, and Jeanette and others should not be under such a sanction either. It is not up to an outsider like Coyne to tell me and other PwME what we should and should not do. I expect that White and Wessely are laughing themselves silly if they have seen his facebook tirade. My feelings on this matter are not about the opinions that the protganists hold, but it is about how people claiming to represent us behave in public. I support freedom of speech but I expect it to be done in a rational manner.

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    1. I don’t really disagree with your analysis except that rather than impose strict judgements I tend to be flexible and try to accept that people are the way they are. To give an example, I used to have a friend whose company I really enjoyed but he used to borrow money and not pay it back. In spite of this, I still enjoyed his friendship. I didn’t shun him. But after a while I was careful not to lend him any money! Well James hasn’t tried to cadge a loan off me but he does seem to have a temper which flares up from time to time. All I’m suggesting is that maybe we can live with that in view of the fact that he’s one of the very few people with clout who’s had the intelligence and courage to recognise our plight and fight our corner – and fight it well. Whether that’s going to be possible or not, I really don’t know at this moment in time. I’m just suggesting that we try not to rush to judgement.

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  8. It’s the nature of both Twitter and Facebook that the most recent thing is what you see, I fear that continuing this little internet war (which should never have happened, but there it is and i can’t wish it away), it will push the really important things off the front page, so to speak. I’m not condoning what happened at all. But we have a hearing in a month, Dave Tuller hasn’t gone anywhere, and the point is PACE, the Wesselyites, Karina Hansen, NIH, and CDC. THAT’S WHAT REALLY MATTERS. I think we’ve registered that we don’t want our community treated like this. We have to move on. We can’t let this defeat us.

    Thank you for this blog.

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  9. Well said. I have to admit I’m sick of talking about it now. In contrast, some of us on Twitter were just introducing David Tuller’s critique to a guy who knows very little about ME. Getting the truth out: that is what is important.

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  10. It is Dave Tuller who did the work, scores of interviews, thousands of pages or reading, hundreds of hours at the computer. It is Vince Racaniello who stuck his neck out to put Dave’s work in front of the scientific community at the highest level. Malcolm Hooper, Margaret Williams, Tom Kindlon and the Countess of Mar have slaved for years and years to put the facts on the public record and keep them there. I could go on. The point is, you can’t write as though “Tuller and Coyne” each contributed on an equal footing; Tuller and others named did at least 100 times more. Dr. Coyne’s contribution was welcome, and I thank him, but his real contribution is to the open data movement, not to ME on anything like the scale of these other folk.

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    1. Quite right – we must not forget the painstaking work of the people you mention – and others too. But it’s been sadly rare for people without direct – or family – experience of ME to get involved in the struggle. Tuller’s contribution has been enormous but so will Coyne’s if he gets the PACE data released.

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