Taking tweets from several years ago that are possibly out of context and say Ben Goldacre feels this or that way about me/cfs doesn't always mean the conclusions are accurate. This is just as inappropriate when others do the same to us.
What I admire about Ben Goldacre and I have a lot of respect for him, is that he appears to not have preconceived ideas and proceeds from there. He keeps an open mind. He's a psychiatrist and works in the same department as Wessely but we don't know how much that impacts what he believes. That's guilt by association and that's a logical fallacy. I think his stance on big Pharma probably indicates his objectivity.
There may be reasons for animosity about me/cfs being a sore point on Bad Science.. The xmrv studies were looked at with a critical eye pretty quickly when negative studies were published.They were attacked from (supposedly) ME patients. Several years ago on a thread about ME/CFS and then a similar thread about Dr. Myhill some of the responses were so inappropriate it was shocking even though these were posted by the same few people.
But on the whole, I love the Bad Science Forum. Ben Goldacre really doesn't have much to do with the forum and in fact may not have his name on it because he doesn't have the time to give the proper attention to it.
I think it is disingenuous to say that any researcher who is not addressing the PACE trial is against us. We are living through this and because of that we, and I include myself, we sometimes think that everyone should focus on our issues. In a perfect world but the reality is that there are so many issues in this world.. Are we against research on illnesses here simply because they are not mentioned on the forum?
Barb
I've often wondered if others may have preconceived notions about him because he debunks a lot of alternative medicine. Who knows?
Let's start with the idea that there were trolls doing irritating things on ME/CFS threads on Bad Science years ago. Granted. One in particular on the xmrv thread who should've been banned a long time before they were, but since they did go ahead & ban that poster, one wonders why they were kept around, as that poster offered nothing beyond the same thing over and over again. It almost seemed like they were allowed to stay almost as a personal plaything--'look, it's a CFS troll.' Similarly, another, the volcano, on other threads. Granted. It would be foolish to deny any of that.
If you're going to compare anything they or anyone else posted to the nasty, vicious, personal insults hurled at people arguing the scientific merits of the xmrv hypothesis--or, rather, the issues with some of the negative reactions towards that hypothesis, which at the time hardly seemed unreasonable; arguing that ME/CFS is a serious, primarily physical condition better described by the Canadian Consensus Criteria than, say, the Oxford Criteria; or those arguing against the PACE papers, then I'd say your judgment is in serious question. But I guess it never gets old: patient or patient advocate tries to explain that this is a physical disease, but makes the fatal of error of arguing that CFS is 'real'; cue the horde to stomp that person into submission, because of course mental illness is just as 'real,' and shame on the CFS patient for perpetuating the stigma of mental illness, which is something that nobody should be ashamed of. Especially CFS patients, since PACE didn't say it was a psychological illness anyway!
Never gets old. Science, good; patients, bad. CFS not necessarily psychological, but just look at the things these people say, and don't they have a lot of energy to post all the time! Psychiatrists = dedicated, conscientious researchers determined to ease suffering; patients = anti-science, anti-psychiatry malcontents comparable to animal rights extremists or climate change denialists hassling researchers with vexatious FOI requests.
Anyone who wants to can go back & read those threads for themselves and make their own decisions and judgments (not that I would recommend or encourage this; my feeling is that it would be more aggravating than it's worth for most patients). Most of it was painfully childish, including them coming onto this forum themselves. To what end? They 'won' every argument: the xmrv hypothesis was officially withdrawn; ME/CFS, in spite of the IOM report, still, clearly, isn't taken any more seriously by medical science than most people would the condition described by Oxford criteria, and there seems little chance we'll see much change anytime soon from the existing paradigm of NICE Guidelines/CDC/Mayo Clinic; and PACE stands. In spite of recent attempts by Tuller & Coyne & Laws (patients don't count, really) to call attention to perceived flaws. They could've banned annoying people, but chose to come here instead. I suppose, though, that this might not actually be all that surprising, if you consider the 'piglets' episode (or that they're dismissing Tuller & Julie Rehmeyer, and referring to Coyne's recent talk as conspiracy theory).
And oh, by the way, isn't it interesting that that NHS Choices writer who went for the double punch of 'death threats' and 'too lazy' on Twitter just happened to have a fellow Twitterer copied in on one of those tweets who...just happened to be one of the most vicious, nasty, abusive posters on the ME/CFS threads.
Then there's that one thread that people can't read for themselves. Based on this post it's reasonable to conclude you don't know why that thread isn't there anymore.
Well, I can't offer my speculation as to why it 'disappeared,' only for the reason that I don't want to potentially affect any legal actions that may still be in play. If you honestly believe that the 'attacks' from patients on the Myhill thread were worse than the things that were said about her...I honestly don't know what to say. It's hard not to say something that's not very nice. I'm no supporter of Myhill (or alternative medicine, for that matter--funny how skeptics always slam 'CAM' and NCCAM without ever considering that Stephen Straus might've been as wrong about CFS as he was about 'CAM'), and never was, either. But the idea that her sins were so grave that she deserved the posts on that thread is beyond bizarre, so your putting it on one 'side' while not saying a word about the 'other side' is, in my view, ludicrous and offensive.
You want to go ahead & be supportive of Goldacre, that's your choice. Everything he's about, speaks to the current reappraisal of PACE, yet he hasn't said a word. Coyne has tweeted at him several times, with the only response being that he's 'too busy' to get involved in Coyne's 'CFS spat.' This was a publicly funded trial; if you don't want to believe that it would have been entirely consistent for him to take a look at the recent analysis, you are certainly entitled to that, too. You can also believe whatever you want as to why he de-linked the forum from his website. Funny, isn't it, how that thread was 'quarantined,' just prior to it being 'lost.' Gee. What a boo-boo. Whoops.
I guess you didn't see it.
