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PACE Trial and PACE Trial Protocol

Discussion in 'Latest ME/CFS Research' started by Dolphin, May 12, 2010.

  1. Graham

    Graham Senior Moment

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    I don't know whether it is just a fable or true, but I rather like the idea that the local Chinese doctor was once only paid while his patients were well. I'd be willing to pay a psychiatrist or Lightning practitioner a lot of money for a cure, but they all want money for speculative treatment. Perhaps it's about time they had to provide services "fit for purpose" like manufacturers of goods.
    WillowJ likes this.
  2. Marco

    Marco Old blackguard

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    I'm glad the analogy worked well. Perhaps a simpler example would be driving on ice. Its something most people are very wary of; can be improved with practice but you will always run a risk and you'll never drive as quickly or safely as you could on a dry road.

    Note though that I am conceding some effect for CBT. I would expect that some (or possibly many) of us (by us I mean people with any chronic illlness) run the risk of overcompensating and erring on the side of caution and may be able to do a little more than we think. I recently heard one psychologist attribute the effects of CBT to an improvement in self-efficacy - as good an explanation as any.

    However we have seen that the effect is modest indeed and appears less pronounced for ME/CFS than for other illnesses such as MS. There is also no reason to expect (and no evidence to support the notion) that any improvement in 'self-efficacy' leads to any progressive improvement in functioning beyond the limits imposed by a particular illness and certainly no miracle cures as the press hoo-haa would suggest.

    I can think of alternative coping strategies (e.g. mindfulness) that would have a similar effect while not simultaneously insulting my intelligence.
  3. Esther12

    Esther12 Senior Member

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    One things is - we don't know what's wrong in the first place. If we could find a puncture, that would make resolving things much easier.
  4. Graham

    Graham Senior Moment

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    So, putting Esther and Marco's comments together, how about a pilot taking off and detecting a fall off in power for no obvious reason? A crash there would be a little more dramatic. The CBT therapist would obviously be safely seated in the control tower, far away from the consequences of his or her decision.
  5. biophile

    biophile Places I'd rather be.

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    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:

    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.
    markmc20001 likes this.
  6. Marco

    Marco Old blackguard

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    I wouldn't get too worked up about them Biophile.

    They come across as a bunch of unstable, misanthropic, scientist wannabes to be honest and you really have to feel sorry for people who get off on 'moron baiting'.
  7. Graham

    Graham Senior Moment

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    Hi Biophile

    Nearly there now with the project. I'm not really bothered about the ranters and ravers though. We have to focus on those who really affect our lives - the general medical professionals and the decision makers, who really don't have a handle on this level of scientific analysis. Some of the graphics we have developed really hammer home the truth, and I am hoping that some of our analogies will enlighten some of them. I really don't think it is worth the effort of trying to argue with the ranters (on either side): they seem unable to take a dispassionate stance and analyse the information to hand. Personally I am glad we have the PACE trial - I am sure that it will be a turning point towards proper biomedical research. I'm just sorry that they needed to waste so much money when the indications were there beforehand.

    The survey results are proving to be really fascinating. It is becoming clear how the Chalder scale (and presumably the sf-36) masks harm, and the natural variations over a year from good to bad patches make the 2 point "clinical difference" measurement seem pretty useless. Now I can't wait to get it all together. Here's an interesting fact - it is possible for a score on a bad patch to be better than a score on a "today" patch. Suppose today your memory has dropped from a 2 to a 3, but the rest of you is pretty much the same (too much time spend reading technical posts on PR). Contrast that with a day when your energy and fatigue are really bad, but you have already marked them down as 3 so they can't get any worse. Now I have to find a way to explain that clearly.
  8. Dolphin

    Dolphin Senior Member

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    Best of luck with it, Graham, and anybody else involved. "Floor effects" (or "ceiling effects") is a technical term sometimes used to describe the problem you mention. You could calculate the percentages for each item and overall for "good period", today and "bad patch" and that might be useful to summarise the finding.
  9. WillowJ

    WillowJ Senior Member

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    Or pay like a building contractor/subcontractor: a deposit up front, and the remainder upon satisfactory completion. No satisfaction (no results as promised according to contract), no final payment.
  10. Esther12

    Esther12 Senior Member

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    I think that we've got to remember that most on-line 'sceptics' are just people out for a bit of fun with like-minded others. They want to make fun of horoscopes, or some loopy bit of alternative medicine they've just read about, and maybe get a bit of a sense that they are setting the world to rights. It's more like people posting on a Bob Dylan forum for fun, than people who are really motivated and committed to making great new music themselves.

    They're probably not going to want to do doing any hard work, or look carefully at complicated and detailed complaints for things outside of their own area of interest. Also, a lot of rubbish is posted by patients about CFS. It's not fair, but if someone has just read one nonsense complaint about PACE, then they're going to be uninterested in looking at another, and assume that all complaints are wrong or poorly argued. It's not as if those defending the PACE trial are judged by the claims of everyone who believes that CFS should be treated as a psychological condition, and some of the absurd claims that they have made - but CFS patients tend to get lumped together and dismissed as one.
  11. biophile

    biophile Places I'd rather be.

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    Hi Graham (and Marco). I don't think we need to go visit the forum to debate the issue with them. It is possible that spending time reviewing the Bad Science thread for ideas has given me the false impression that underneath the banter it is still supposed to be a place for serious open discussion? I guess what I meant about "addressing the issue" was keeping the above mentioned attitude in mind when responding to PACE in general. I agree that there are extreme positions on both sides of the argument. Good point about focusing on people that matter. However, the attitude I described and documented above is very common, including amongst the scientists and journalists we are supposed to "trust", and probably also some of the intended audience of the PACE Confluence project. I'm looking forward to seeing the visual presentation on issues with the Chalder fatigue scale.

    Hi Esther12, I think you are correct about how people are just having fun and go for easy pickings, whereas the PACE Trial takes a lot of more work to go beneath the surface of just reading the paper and taking it at face value. I just checked the Bad Science forum section again and found this short description: "Click here for action, and all the fun of the fair: quackery, scare stories, miracle cures, iffy adverts, passing banter and the great british sport of moron baiting...". Also, the title "Bad Science" has underneath it the phrase "fun with pseudoscience". Looking at these and the list of threads on various issues, members would be used to dealing with more obvious cases of quackery and pseudoscience and media misrepresentation of science. I'm sure there would be some people who are there for more indepth and serious debate, but I made the mistake of thinking the forum was supposed to be based on that, albeit one with rough housing which is fine if it doesn't dominate the discussion.

    Going back to the perception towards the ME/CFS community, we do have a bad reputation. Large proportions of people in the general population put stock in questionable reasoning and opinions and actions, the problems that some people seem to think are characteristic of the ME/CFS community are really just that found in people from the general population when put under the pressure of desperation and isolation and denigration. Some of the bad reputation seems justified if not misplaced, but much of it is borne of ignorance and prejudice.
  12. Angela Kennedy

    Angela Kennedy *****

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    Unfortunately many of those 'baiters' may be astroturfers as well. Even genuine 'skeptics' may find their own responses being ideologically constructed by their 'fellow posters' without having the ability to understand that.

    Now if they had any '101' knowledge of sociology, they'd understand that, ironically!

    It makes claims of authoritative 'skepticism' subject to -well - scepticism!

    To be honest, in this climate of astroturfing and negative PR campaigns, if the genuine 'skeptics' can't differentiate between ideological constructions and actual fair comment, then it means the 'bad reputation' the ME/CFS community has is never going to be a good reputation, because it's never a level playing field. Anything a sufferer or supporter says on those forums is attacked, unless it's "psychogenic explanations G-O-O-D".

    Abbie Smith's attacks on Judy Mikovits are interesting. She likened Mikovits to Creationists at one point, and to my knowledge she was not challenged on this by any of her regular readers/followers. No-one had the presence of mind to say "that's a ridiculous analogy, an ad hominem".

    It doesn't say much for the 'skeptic' community's ability to be 'skeptic', unless Bad Science and ERV's blog, 'skepticat' etc. are NOT representative of the community.

    Bad Science aren't great with critiquing bad science either. There's a paper doing the rounds claiming all sorts of rubbish about fat women's intelligence, for example, claims anyone with a grounding in methodology and hypothesis reasoning would be able to critique. Last time I looked, there was nothing but acceptance of the paper's claims! Very demoralising.

    It means many in the 'skeptic' community are behaving as 'true believers', which is comically and tragically ironic.
  13. biophile

    biophile Places I'd rather be.

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    Beavis and Butthead skepticism

    Some interesting points. Just like there's no guarantee that anyone posting here at Phoenix Rising or any other ME/CFS forum is a sufferer or supporter with the best interests of the relevant community at heart, there's no guarantee that anyone presenting themselves as a "skeptic" anywhere else is actually primarily interested in or aware of critical thinking rather than dumping on people with dismissal or insults or trumping and feeling good about pushing their own point of view down someone's throat. Not to mention that critical thinking and being an insufferable prick are not mutually exclusive either.

    The part I agree with the most is "It doesn't say much for the 'skeptic' community's ability to be 'skeptic', unless Bad Science and ERV's blog, 'skepticat' etc. are NOT representative of the community.". Think of all the times a "skeptic" has taken great lengths to critique the biological evidence for ME/CFS or even doubted the existence of the condition itself and then followed it up with the astoundingly uncritical parroting of psychogenic and/or psycho>somatic hypotheses without much evidence at all, or with the selective citation of a flawed study or two amongst a bunch of conflicted literature and presented it as a conclusive matter of fact in such a way that even Wessely et al would probably blush?

    I'm guessing the motivation is not there for equal opportunity skepticism, and as I've said before I don't expect everyone to apply the same effort to everything they look into, but something else seems strange about it. Having a point of view about an issue based on limited understanding is one thing, but presenting oneself as "fighting the good fight" against poor science/reason in general and then proceeding with blundering blindspots and lashing out at anyone who calls oneself on it is quite another thing, what's really going on here? I haven't seen the paper on fat women's intelligence so I cannot comment, but I can just imagine what you mean.

    When the PACE Trial was published and covered in the online news, I took notes on how it was received in the reader comments because it was a good example of what happens everytime ME/CFS is covered anywhere. There was a massive amount of contempt directed towards patients, regurgitating the same old vitriol and debunked stereotypes with comments that were appallingly prejudiced, displayed sheer ignorance, automatically blamed the patients, and showed no consideration for their suffering whatsoever. Anecdotes about and accusations towards patients included being lazy, stupid, selfish, work shy, no hopers, malingerers/scroungers, self pitying, whingers, bandwagoners, of poor character, weak-minded, attention seekers, just in need a good hard days work, etc. It was often claimed that ME/CFS does not exist, that patients are not genuinely ill and simply chose to be this way so therefore deserve no sympathy for their "fake" illness and/or dismissable psychological problems.

    Some of this would have inevitably been internet trolling, but much of it reflects what people actually think and say in the real world as well, because they believe or assume that ME/CFS patients fit these descriptions, which naturally attracts scorn through guilt by association. Then people wonder why some patients may seem a tad sensitive to accusations, and after years of having their illness being routinely denigrated and dismissed wherever they go because of the perceived psychological nature of it a small proportion of patients may begin to have the impression that mental illness is less real?

    Then there were the armchair experts, not as bad as outright internet trolls, but often opining with smug and glib comments and condescending advice about how to deal with lifestyle illnesses and psychological issues. There were some similar well-meaning comments which were somewhat more sensible sounding or better worded but still misguided. What struck me though is that some of the more moderate commenters were actually much more "disgusted" at patients' criticism of the PACE Trial than they were at the vitriol directed towards patients. This is the kind of bullshit patients and advocates have to deal with frequently, and then dumped on further when challenging it.

    Similarly, lots of the comments on other blogs and articles relating to ME/CFS itself are just clusterf*cks of smug overbearing n00b which ironically/hypocritically arise from the same or similar biases these people accuse others of. Credit where it is due, usually there are good points from both sides of an argument, but notice how much the Dunning-Kruger effect is being bandied around in the ERV blog comments, including by those who seem to be displaying examples of it themselves. It is difficult to say if these sort of websites are representative of the "skeptic community" as a whole, I'm guessing it is only partly representative and the rest of the community are focusing on other issues while the Beavis' and Buttheads of the skeptic community (perhaps even with the same snicker behind a keyboard) are more attracted to perceived easier targets? Often the quality of reasoning is higher in articles on joke websites like www.cracked.com (for a laugh, see this article: http://www.cracked.com/article_18853_5-topics-guaranteed-to-elicit-condescending-advice_p2.html).
  14. Dolphin

    Dolphin Senior Member

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    One thought on this, for what it's worth: I'm not sure how many people are aware of the political compass. One can take the test here: http://www.politicalcompass.org/test if one isn't - it doesn't take that long. Probably best to not read what I say below first if one is curious as potentially it might influence results?





    ------
    Anyway, as one can see, as well as the traditional left/right spectrum, there is also the Authoritarian/Libertarian spectrum. Many people (not sure the percentage) are going to be in the top half. Probably particularly for those higher up, there natural tendency is to believe the experts who have got establishment approval e.g. people like the authors of the Lancet paper. They are in a position where: they were able to get millions of pounds for research, the treatments are already seen as "evidence-based" and a prestigious journal like the Lancet has published their study. In such a scenario, it is probably difficult for a lot of people to envisage that the people and what they say are very wrong/incorrect. A lot of people's natural inclination is to believe the established view. So as I see it, that's the situation we've found ourselves in unfortunately. (BTW, my natural tendency is to question things; the problem is I may do it too much e.g. I might have found it hard to study medicine as I would have had too many doubts all the time that what we were taught was correct; I would have liked to look at the evidence for all the statements and even then probably too much of my brain power would have been spent questioning).
  15. Graham

    Graham Senior Moment

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    That was interesting Dolphin! I answered all of the questions (but does that make me accepting of authority and expert opinion?), and was very pleased to find myself down there with Ghandi and Mandela. I'd have been gutted to have been there with the Pope or Bush. I wonder if anyone ever ends up in the bottom right corner?
  16. Bob

    Bob

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    Interesting and good fun, thanks Dolphin, especially if interested in politics, like I am.

    I have been having similar thoughts in relation to other subjects on the forums, and have realised that many people look towards authority figures for either comfort or to be presented with opinions (or 'facts' that are based on minimal evidence) that they can adopt for themselves, or use in their lives. And the opinions of authority figures are often taken at face value.

    It's understandable, as we can't assess, for ourselves, every single piece of information that we come across in our lives. So we all look towards authority figures to a certain extent.

    Many of us have learnt the hard way about doctors and the government in relation to ME.
  17. Angela Kennedy

    Angela Kennedy *****

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    And with that in mind, what is particularly interesting is the way anons on forums, blogs etc. adopt airs of authority, make claims of authority, and others treat them as authoritative, even though they are anons. People can be willing to treat them as if they are what they say they are- when the rational response should be scepticism.

    It's an interesting- but worrying - phenomenon.
  18. biophile

    biophile Places I'd rather be.

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    I did the test a few times, here is the last attempt:

    [​IMG]

    I guess this makes me some sort of welfare-sympathizing pinko with a mild distrust for authority?

    Good point Dolphin, I can just imagine those who gargle and swallow the PACE Trial results while dumping on anyone who doesn't will be more likely to appear on the other side of the spectrum.

    OMG call the coppers and the UK news media, a possible sexual reference, better add "sexual harassment" to the list of "criminal activities" committed by "ME militants"!
  19. Esther12

    Esther12 Senior Member

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    @ bophile: If you do find any legitimate defences of the way the data from PACE was presented, it would be great to see them. If you found lots of worthwhile points, maybe you could start a new thread? Or if just a few, put them in here?
  20. biophile

    biophile Places I'd rather be.

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    Just so I'm sure, did you mean arguments supporting PACE and/or challenging claims made by the critics?

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