Are we PACE critics just a bunch of stupid angry c*nts?
I'm sure that title got your attention, please don't moderate it, I'll explain later why I implied the awesome C word. During the recent circle-jerking episode at the ERV blog over Mikovits' "slidegate" or "gelgate", numerous comments there and here at Phoenix Rising have drawn attention to the apparent double-standards shown towards Mikovits/XMRV vs the PACE Trial. It is difficult to compare the two directly (eg Mikovits mislabeling a gel slide vs PACE mislabeling physical functioning normative data, external commentators routinely mislabeling normal as recovery, numerous methodological weaknesses in the trial itself, PACE avoiding the collection of potentially embarrassing actigraphical data, misleading Lancet press release on "getting back to normal" etc) because the nature of the two research fields are different, but I don't doubt that there is a discrepancy.
At risk of generalizing, it seems that the prevailing attitude towards PACE Trial critics from self-styled skeptics in general is basically that Hooper is an irrational ranting dullard and the rest of us are just a bunch of stupid angry c*nts for criticizing a good solid piece of research which we simply don't like because it challenges our erroneous cognitive biases. Apparently we allegedly [don't understand science, are extremist radicals for questioning the PACE Trial, make up bogus claims for political or ideological reasons, don't like anything that suggests a psychological element to ME/CFS, further stigmatize mental illness as less real, avoid the stigma of mental illness by denying our psychological problems and insisting our illness is biomedical, we don't understand the mind-body connection and have a naive Cartesian dualism, lack the insight to realize our symptoms could be psycho>somatic].
I'm not going to defend against the notion that some people within the ME/CFS community may not be the best critical thinkers and may endorse some degree of Cartesian mind-body dualism and do appear to believe in what some would consider pseudoscience or quackery, but that is pretty normal in the general population and not specific to ME/CFS. Anyway, I guess the prevailing attitude towards the PACE Trial from the online ME/CFS community is that it is seriously flawed and possibly fraudulent, with people having different views regarding how bad it is and some concluding it is OK? I don't think the PACE Trial is as bad as some negative comments I've seen online, it was not fraudulent in the sense that data was manufactured and IMHO there is no single major flaw on its own that would invalid the entire trial, but there are numerous complex issues which take a while to understand and potentially accumulate into rather questionable grounds for PACE.
I attempt to apply the dialectic without false middle ground, considering opposing views in thought experiments to form a synthesis. But our health or that of loved ones are at stake here, this isn't just an exercise in mental gymnastics. I dislike the general implication that either we agree the PACE Trial was good and solid or we're just a bunch of extreme fringe radicals making up rubbish and deserving of abuse or dismissal. Skimming through comments on ERV's blog on Mikovits' slide issue (
http://scienceblogs.com/erv/2011/09/xmrv_and_chronic_fatigue_syndr_29.php), I came across a few comments from "frozenwarnings" who claims to be a medical researcher (comment #163), which I chose to post here because they are classic of this attitude and because the poster is an alias I recognize from the Bad Science forums where this attitude is king:
#160: Laura, the PACE Trial is totally irrelevant here, but just for your information, it was a well conducted sound piece of research that needed to be done. You've obviously been listening to the echo chambers of the so called patient advocates. These people know NOTHING about science or research. They are conning you. Listen to the scientists, not the people pretending to be scientists and you will learn a lot more. Many scientists have been working hard for years to find a cause for CFS. Just because they do real science, are professional, and don't whore themselves out to any group that will have them, and aren't interested in personal glory does not mean they weren't there doing what scientists do. This whole affair has been detrimental to the cause of finding a solution to CFS because it has shown other scientists that should you find anything that goes against the deluded people on certain forums you will be bombarded with vile abuse and false accusations (as ERV has been in the past, along with many others). For anyone who wants to know about CFS there are plenty of places to find out, but this isn't the place, this is about science. Just stay away from patient forums where people are pretending to be scientists. - Posted by: frozenwarnings | October 2, 2011 3:55 PM
#695: The reason no-one (who took an interest) is tearing apart the PACE Study and the psychiatrists is because after reviewing the evidence, by reading the papers, checking up on the scientists, reading the abuse from the numbnuts advocates we decided that the numbnuts are talking out of their arses and are prejudiced against anyone and anything that might suggest any psychiatric angle to CFS. - Posted by: frozenwarnings | October 7, 2011 7:54 AM
#713: Not remotely interested in reading anymore biased patient opinions on PACE thankyouverymuch. Read them all, read the paper, read the scientists' commentaries. Perfectly good piece of work, needed doing. It didn't say what the twatvocates wanted it to say so they have been banging on and on and on about it ad nauseum, while knowing jack shit about how research is conducted. Please don't waste your energy. - Posted by: frozenwarnings | October 7, 2011 9:48 AM
Oh, and no love lost between "frozenwarnings" towards (presumably Angela) Kennedy who has challenged this double-standard in skepticism: "
#640 - CFS has nothing to do with V99, Gerwyn or Kennedy are just bitter losers who would rather be big fish in very tiny ponds than actually do anything remotely useful with their lives. It's entirely possible to have cancer and still be a twat." - Posted by: frozenwarnings | October 6, 2011 10:19 AM.
The following comment by [tinkerbell_wannabe] and subsequent "+1" from [foxtrot7680] on the Bad Science forums further exemplifies the overall attitude there rather well: "
The last 20 or so posts sum up in a nutshell *exactly* what I love about this forum 
A perfect storm of proving morons wrong with Science, credit where it's due and calling people c.nts." (
http://badscience.net/forum/viewtopic.php?f=3&t=16659&start=2675#p604694) I don't mind the language or the rough-housing atmosphere, I understand that is what Bad Science forums is about, I just take issue with the stench of misplaced smugness. The Bad Science forum thread featuring the PACE Trial starts here:
http://badscience.net/forum/viewtopic.php?f=3&t=15791&start=4350 - I'm not saying that all the PACE Trial critics who have posted there have presented the best arguments, or that skeptics never made any good counter-arguments, but instead of open discussion about potential problems with the PACE Trial there was a lot more automatic relegation, posturing about credentials, and excessive name calling.
As part of my attempt to look into the PACE Trial I have saved a bunch of pages from a Bad Science thread to find any good points worth considering on either side of the argument. I still have to look further, but so far I have skimmed the thread and adequate debunking of PACE Trial critics has not really taken place. Almost no one even bothered to read Hooper's critique before "knowing" for sure that it is completely bogus and worthy of insults. The consensus there is that the PACE Trial has no significant problems at all and anyone who questions that is biased or deluded because the case is now closed and firmly rejected, with attempts to revive the topic resulting in more insults. I happen to use the C word frequently IRL, but it becomes a problem when it basically becomes the default response when someone attempts a sincere discussion, the urge to dump on people perceived as your opponents may actually qualify as a conflict of interest.
At one stage the thread even got shut down for moderation because of supposed libel, such as accusations that the PACE Trial authors were guilty of fraud. I'm not sure if accusations against Hooper were afforded the same consideration, but notice that no such closing down occurred on the XMRV CFS thread when Mikovits was accused of fraud. I don't expect everyone to be an equal opportunity skeptic like "mjrobbins" who visited Phoenix Rising from there 18 months ago to reach out and was never seen here again, but there does seem to be a double-standard applied to various aspects of ME/CFS.
If only I had a dollar for every time someone was told to STFU and/or f*ck off and/or called a c*nt (or equivalent) on the Bad Science forum for attempting to critique the PACE Trial or explain how biopsychosocialists view psychobehavioural factors in ME/CFS. Patients or supporters are also often accused of misinterpreting biopsychosocialists' words as saying that CFS is a pure psychiatric disorder all in the mind whereas technically they are saying it is medically unexplained functional illness with primary psychobehavioural factors, but there is one poster "jeff" who recently has been abused repeatedly for merely quoting mostly accurate interpretations of the latter. I suspect that some members of the Bad Science forum are attracted there more for the opportunity to be the ones displaying their (often illusory) superiority over the supposedly ignorant masses rather than engaging in sincere rational skepticism towards all bad science. Would such behaviour make someone a "skeptic*nt"? ;-)
On the other ME/CFS forum website, "asleep" once asked: "
Has anyone ever encountered a self-labeled 'skeptic' that actually engages in real skepticism instead of status quo apologetics with a suffocating self-righteousness and analysis as sharp as spoon? I have not." (
http://www.mecfsforums.com/index.php/topic,7041.msg83733.html#msg83733) I have encountered reasonable skeptics so it would be unfair to generalize, but there is indeed a lot of sloppy analyses and "status quo apologetics with a suffocating self-righteousness" whenever ME/CFS is involved. We see something similar in related online news article comments, amongst the usual trolling and vitriolic ranting against ME/CFS and all the comments borne from the arrogant ignorance that comes with superiority bias, with smug people regurgitating the same old simplistic or discredited or outdated arguments, often with misguided appeals to authority and to the mind-body connection.
Angela Kennedy frequently posts about this sort of social phenomenon, and about the cognitive biases and blindspots and double-standards coming from people presenting themselves as objective critical thinkers. And let's not forget the news coverage which inappropriately conflated and juxtaposed the criticism of the PACE Trial with harassment and criminal activities. Some people here may think that giving this any attention at all is a waste of time and best ignored, but I think we need to acknowledge this exists and is a problem that needs addressing. All this is a reminder of the need for something like Graham et al's Confluence project on PACE.
