When the 'Holiday Season' Is No Holiday at all for Those With ME/CFS
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Cleaning up after XMRV

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Ecoclimber, May 18, 2012.

  1. Esther12

    Esther12 Senior Member

    PPS: One other thing, is that the pragmatism around CFS is that it is extremely incomplete pragmatism - the RCTs sued to promote certain approaches to patients necessarily fail to account for the social difficulties which promoting pragmatically justified narratives causes: eg: Promoting the notion that CFS is a result of deconditioning may increase an individual patient's sense of control and responsibility in a way which improves certain measures of functionality... but these ideas about CFS also lead to people making other assumptions about those with CFS which make functioning within society more difficult. We can never really know what affect our actions will have, which is another reason why pragmatism can so easily be used to impose the interests of those in power and authority upon the weak.

    Also, PACE has shown how incredibly small the improvemenst in certain measures of functionality are anyway, and other research has shown that these measures of 'functionality' don't seem to correlate with other, more objective and paerhaps meaningful measures anyway.

    PPPPS: Talking about CFS always gets complicated.
  2. Mark

    Mark Former CEO

    Sofa, UK
    That's it exactly: I thought it was just a sort of human weakness, a common instinct that we need to rise above; realising it's an actual philosophy is a real revelation.

    That too: I studied and read quite a bit of philosophy, but I guess all that registered with me about pragmatism was "Dewey" and that I didn't think much of it; I never connected it with these other ideas in the real world. The subject didn't seem very interesting or worthwhile so I never paid much attention to it - in retrospect I think I should have paid more attention than I did to the ideas I disagreed with.
  3. barbc56

    barbc56 Senior Member

    Esther, this is absolutely fascinating, I remember having a unit devoted to this subject, not in philosophy but history and how it affected American thinking in political, historical and social context.

    Barb C.:>)
  4. Esther12

    Esther12 Senior Member

    It's hard to know to what extent we should seek out the ideas and arguments which seem best and strongest, and to what extent we should spend our time on learning about the worst and most harmful ideas and arguments. Sadly an interest in CFS seems to push one towards the dregs.

    I think that I also had a passing awareness of Dewey, but lazily categorised him as 'well meaning, harmless but uninteresting'. Over the last few years, I've come to dislike quite a few things about my younger self, which I suppose is a good sign of my improving as a person... but some of the ways in which I dealt with life were really lazy. I do feel as if I've been somewhat radicalised out of a misplaced contentment with modern liberal democracy, academia and science. These systems only work if most people are fighting for an honest pursuit of truth, and they're easily led astray when people focus more upon developing their careers, or having a nice time. Previously I thought that the self-correcting mechanisms of science, a free press, peer review, etc allowed for us to have it all without needing to sacrifice too much for it.

    I'm sure that there's loads of interesting stuff that I'm missing out on - were there any sections of your course which you thought were particularly interesting? My understanding is largely based upon pragmatic approaches to CFS and William James - however since I've started reading about pragmatism as a philosophy, it does seem to keep coming up in other political and social areas... it corrupts everything!

    eg: Lots of creationists in America seem to not be what we'd think of as fundamentalists, but are really pragmatists concerned about the impact upon society of teaching children that they are evolved animals, rather than creatures created by God.

    edit: This is getting really off topic for an XMRV thread.

    Also, I'm a bit concerned that I'm making pragmatism sound worse than it is, and universally terrible, when there are different approaches to pragmatism. If you read William James's religious arguments, then they're pretty much as bad and simple as the brief explanations above... but pragmatic philosophers, including James, were aware of many of the obvious concerns about a pragmatic approaches to truth, and have attempted to deal with them. I do not think that they've dealt with them effectively, and really dislike pragmatism as a philosophy... but it's obviously a really complicated and diverse topic.

    Only mentioning pragmatism in relation to CFS quackery and creationism probably rather unfair on pragmatists. If anyone decides pragmatism is a great thing, we could always discuss it in another thread!

    another edit: There's always more to say - an effort could also be made to distinguish between pragmatic philosophy in theory and practice. Lots of ideas and arguments become corrupted according to the interests of those in positions of power and authority... but this does seem to happen more easily to pragmatism than many other ideologies.

    I think that I'm a bit worried I wrote very casually about complicated ideas, and in a slightly polemic manner that only gave one side when there's no-one here who is defending pragmatism.
    Merry likes this.
  5. George

    George waitin' fer rabbits

    South Texas
    Great correlation here! I think the research into X/P MLV's is likely to heat up rather than cool down over time. Proving the existence of a new human retrovirus is just to cool to pass up. (big grins) It will be interesting to watch the science. Even if it doesn't help those of us who are ill now.

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