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
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…
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