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