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How the government bought off the advocacy movement

Discussion in 'General ME/CFS News' started by RustyJ, Jan 2, 2013.

  1. Mark

    Mark Acting CEO

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    In one sense there's a real dynamic being described there, which is in the final analysis the dynamic that exists wherever money exists, in any walk of life, but I think it's important to think from a neutral perspective on how this actually works. The HHS are, of course, only going to give money to orgs whose perspectives and views are broadly in line with their own. In turn, Simarron are only going to employ individuals whose views are compatible with theirs. So there's a compatible perspective in the first place, fairly clearly, and that's always going to be inevitable.

    Now, the concern over the financial ties implied now amounts to saying that there's an added incentive, perhaps, to retain those common views, and to perhaps move closer together with that alliance of viewpoints. BUT...

    That's quite right, and it's crucial. To be accurate - as a friend pointed out earlier today - this should read "potential conflicts of interest". It's very important that such things are declared and are transparent.

    It's also important to always keep in mind that advocacy really doesn't have to be compromised by this. OK, so the emphasis of writing may be affected (though it doesn't have to be), but also, just as the parties move closer to each other in views, and influence each other, so the advocate (Cort) moves closer to having access to the ear of Simarron and the HHS. What he says will very likely have influence on them, just as what they say has influence on him, as they work together as a team and learn from each other.

    In any potential conflict of interest like this, there are potential threats, and potential opportunities too. So long as the potential conflicts of interest are declared, this is simply the way the world works and it is present in every situation where an individual is employed or paid, in the same way. So IMO there's not much to make a fuss about here, really, just something to bear in mind when assessing what people say.
    ahimsa, taniaaust1 and alex3619 like this.
  2. barbc56

    barbc56 Senior Member

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    It was a crime. it's a shame but I don't believe it had anything to do with me/cfs. Just someone's greed. I thought there was accountability by congress and someone had to apologize. Osler's Web is a revisionist historical account and sensationalized. Her blog is the same way.

    Again, we are grinding to a halt because of the obsession of the past. No we can't forget but this is counterproductive, IMHO.
  3. adreno

    adreno 3% neanderthal

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    I apologize if I have offended anyone by my lack of knowledge of past events involving the CDC. My intention has not been to trivialize anything. I do not deny the existence of bias, corrupt individuals, neglect and incompetence. What I do not believe in is global conspiracies.

    In this thread you will find allegations that "the government" is bying off advocates, that Cort Johnson and Simmaron is corrupt, and that "the government" is only funding studies that will lead to nowhere because "they are happy with us being sick". I state again, I do not believe in these things, and that's the point I have been trying to make in this thread. That will be my final word on this matter.
    TessDeco, taniaaust1, SOC and 3 others like this.
  4. alex3619

    alex3619 Senior Member

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    My blogs on this issue:

    http://forums.phoenixrising.me/index.php?entries/my-opinion-on-conspiracies.1052/
    http://forums.phoenixrising.me/index.php?entries/the-blame-game-a-way-forward.1064/
    http://forums.phoenixrising.me/index.php?entries/part-one-verificationism.1148/
    http://forums.phoenixrising.me/index.php?entries/the-zombie-age-part-a.1333/
    http://forums.phoenixrising.me/index.php?entries/the-zombie-age-part-b.1334/

    These are all connected. I am trying to build an alternative explanation, one alternative explanation (not the alternative), for these issues.

    Bye, Alex
    Jarod likes this.
  5. beaker

    beaker CFS/ME 1986

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    As someone who was around back in the day, I do not find it at all to be revisionist.

    Nor do I feel there is an obsession with the past and grinding to any halt. Quite the contrary.
    I think remembering the past is important and invaluable in order to review lessons learned, and to learn new ones.
    As George Santayana said, " Those who cannot remember the past are condemned to repeat it."
    taniaaust1, lnester7 and Dan_USAAZ like this.
  6. beaker

    beaker CFS/ME 1986

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    There are many fine organizations other than Simmaron to donate to. ( not a bashing of Simmaron. Just not everyone may agree with their research direction. )
    Check out these 2 threads:
    Mount Sinai ME/CFS Center -- How to help | Phoenix Rising ME / CFS Forums
    which ME charity needs our cash most? | Phoenix Rising ME / CFS Forums
  7. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Of course remembering doesn't necessarily confer understanding. Burke put it better two centuries earlier "Those who don't know history are destined to repeat it", though neither Santayana nor Burke are advancing a principle that stands up to current apprehensions of learning and understanding - human memory is after all a very unreliable source of data, and 'knowing' does not imply a capacity to give knowledge facility. If Santayana had alighted on some truism, then it is especially ironic that 'remembering' is the very source of the most intractable conflicts around the world. As it is history is not some simple source from which one can derive understanding of the present - more frequently the present differs fundamentally from the past that makes the past wholly irrelevant to any decisions that the present demands. In that case remembering merely serves to clog perception and of itself instigate repetition of failed strategies in ways that can reasonably be described as obsessive.

    Osler's Web is nicely told journalistic tale, but as history it fails for lack of context, and because of that probably deserves the charge of revisionism. It is something that is unfortunately characteristic of a lot of the patient/carer discourse about M.E/CFS - which read, at best, like old warrior's tales of past battles endless refought on the kitchen table, at worst it comes across as the remberances of rejected lovers. I therefore don't think it's surprising that some of us often want to shout -"for heaven sake it's time to move on".

    IVI
    barbc56 likes this.
  8. asleep

    asleep Senior Member

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    Claiming something is "revisionist" due to "lack of context" is thoroughly vacuous. It is impossible to provide an account of anything that doesn't exhibit "lack of context" in some form or fashion or from some perspective. Any study of historical documents and accounts places prime importance on reading through a lens of proper context. That you apply this universally applicable attribution ("lack of context") to this account in isolation says far more about your need to debase and undermine the book than any failings of the book itself.

    On the subject of revisionism, I should note that it's no surprise that you employ virtually the same methods that the Wessely School does in undermining (revising) the subjective accounts of others in order to shape them around their theories. Wessely and colleagues rewrite and discard the experiences of others by first denying them their own personal agency and ownership over these experiences, then re-branding and re-characterizing these experiences as inherently irrational and unstable to induce feelings of shame, before finally replacing them wholesale with their own (hypocritically, equally subjective) narratives. So the immediately experienced symptoms of patients are not in fact valid symptoms but rewritten as an over-reactive imagination of weak-willed or malingering individuals. This is literally a method of brainwashing used in various cults: undermine one's most immediate perception of reality, associate it with humiliation, then offer your own "correct" alternative as a means of rehabilitation.

    In the same way, you first undermine historical reality of the patient community (experiences, memories, accounts, etc) as inherently and uniquely unstable and of unreliable agency (by isolated application of universally applicable cautions and caveats). Then you characterize these collective experiences in unnecessarily derogatory and dismissive terms: "obsessive," "like old warrior's tales of past battles endless refought on the kitchen table," and "remberances of rejected lovers." Ultimately you seem to want us to discard this collective experience and instead adopt the a-historical, authoritarian perspective (which is inexplicably and miraculously not subject to these same instabilities) of those who largely contributed to these experiences in the first place. Having to account for the past is only a requirement for the powerless. The powerful can always extoll the "virtues" of "looking forward, not backward."

    Like pastor, like acolyte, I suppose.
    Sidereal, Merry, taniaaust1 and 8 others like this.
  9. satoshikasumi

    satoshikasumi Senior Member

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    How do you think a research initiative ought to work? 100% private funding? Simmaron is only using a model that has worked for other diseases.

    Just because they apply for R01 grants doesn't mean they are "funded by the government." The government money only funds particular projects.

    We are entitled to have a beef with government policy. However, reality is that very little basic research in science is done by the private sector. This is not just true of medical research, but all kinds of basic science, i.e. chemistry, biology, and physics. Usually, government support is required to complete the first steps.
    taniaaust1 and SOC like this.
  10. alex3619

    alex3619 Senior Member

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    Warning: Philosophy Alert

    On context: the first question that has to be asked, is whose context? Context is actually a poor word to use for this, as technically it means surrounding and associated text in linguistics but is more liberally interpreted elsewhere - it needs disambiguation. A better term is worldview or weltanshauung, a discussion of which can be read here: http://english.stackexchange.com/qu...fference-between-weltanschauung-and-worldview

    Setting context merely means the person has decided which aspects of their worldview they want to emphasize, and what additional information they wish to allude to. So context is always biased. Bias is a fact of existence, its inescapable, and it has to be dealt with. Bias can be decreased, but it cannot be eliminated.

    So when I write my blogs or posts, I do so based on my own history and understanding. So does everyone else, presuming they are genuine - spin is something else again, its made to be consistent with general views but is intended to bias future views.

    Everyone else has the same issue. Their understanding and view of the world is implicit in what they write. Its inescapable, though we do use training in various disciplines, including science, to try to decrease the impact of this. In the case of science that includes an imposed scientific worldview (actually many such views), an attempt at a common view of the world using common language.

    Arguing that there is insufficient information to form a judgement is one thing, arguing there is not enough context is not appropriate for something like Osler's Web. How much more does one need? Quite a lot of material was probably edited out or not included, that is the nature of book writing. I already have enough material to write two books, but in the end most of that will not appear, particularly stuff I can't substantiate one way or another.

    However one of the issues that is so often overlooked, typically not even acknowledged, is our worldview deeply modifies what we understand when we read text, and can even alter our reasoning. This does not make people irrational, it means they are using different ideas, thoughts, facts etc. in their reasoning, and hence come to different conclusions.Reasoning based on false information is another issue though.

    When conservatives and progressives get into heated debate, quite a few resort to claiming the other debaters are irrational. Ignoring deliberate spin and propaganda, especially at election time, a lot of this is due to different world views. Even using same words, we may understand them differently.

    The meaning of a word is NOT found in a dictionary - dictionaries contain definitions. Meaning is in the brain, its grounded in experience and hence understanding. Words are just squiggles on a page or screen, its the brain that imposes meaning on those squiggles. Dictionaries are just books of squiggles, written according to an informal methodology that we all recognize. Different experience therefore means we can have different understanding when we read text. I can elaborate on this a lot, possibly even write a book on it, but I don't have the time and it would probably bore everyone into a coma. Many researchers in cognitive science are now looking at this.

    Bye, Alex
    RustyJ likes this.
  11. alex3619

    alex3619 Senior Member

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    Cognitive linguists like George Lakoff call this reframing. The sad fact is nearly everyone does it, we just don't notice.

    We need to frame the debate in terms that are favourable and understandable to us, while still being rational and consistent with the evidence. When debate steps out of our framework, we may be right to criticize it. Its really a different debate, even if the language or subject matter is similar. Selection of a frame can determine how people view the argument. One of the most important things we can do is to get the fame right.

    The psychogenic and BPS movements, which have substantial overlap, have been reframing the debate for decades. Its time this was exposed, and a more appropriate frame for the debate was used by us and when communicating with others.

    This most definitely means we must use a frame that is different from the entrenched frames in most bureaucracy. I do not think its a coincidence that the UK is home to much of this, as the UK has one of the most authoritative and secretive governments in the world, a point I may elaborate on some time. This is more to do with bureaucracy and entrenched institutions though, than the conventional political process of democracy. I perceive a systematic swing to authoritarian views since the early 1980s, to the point where our local left wing party, the Labour Party, is substantially right wing on many issues. Centrist politics is now right wing when compared to the politics prior to 1980 or so.

    (I do not fully agree with Lakoff, but I think on most major cognitive science issues he is right. Politics is something else though, and would require a debate on values. It is not a coincidence that we substantially agree as he comes from a neurological modelling of linguistics perspective, and my incomplete thesis was on neurological modelling of categorization. Indeed Lakoff wrote Women, Fire and Dangerous Things which I was using as background material at the time. What is very different in our views is he has a focus on linguistics, whereas mine is on systems theory.)

    Bye, Alex
  12. Firestormm

    Firestormm Senior Member

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    I think it helps to be aware of or to acknowledge personal bias most definitely when reading/re-writing/interpreting history or indeed commenting/writing current accounts. In a science publication it might be said that this occurs when content refers to previous papers alongside an interpretation of what said papers contained/concluded. Indeed the intrepretation of the paper itself is a reasonable place to see any bias at work - although scientists are supposed to try hard to remain objective.

    It might be that this is part of the context in which the account is/was written. We all have bias and recognising this is I would suggest important for both the author and the reader - but trying to ensure our assumption about others' bias and the claims they make is correct is more important and indeed, harder and so can run the risk of being incorrectly assumed or at least unfairly assumed. But it is often the conclusions/interpretations placed on whatever the evidence presented within the publication are that can reveal most about any personal bias and lead to debate especially if the evidence is limited, based on shaky foundations, incorrectly presented or more open to interpretation.

    I am also thinking of confirmation bias and how that can affect a person's account or indeed perhaps a publication/series of publications by an individual who seeks to present a view or his/her/view. When studying Ancient History, these things were important to recognise in the source material - the extent to which they might affect the person's narrative/recollection is of course debatable - that it exists at least to some extent is I think certain. Easier perhaps to spot or to consider when examining more than one source of evidence or recollection of the event.

    None of this though is overly important when it comes to the quality of the content or the evidence that is presented. If the evidence is for crap then it would be harder to accept the interpretation of it which might conclude it was important. If the evidence is based rather too heavily on an assumption - and a biased assumption at that - then the quality of the publication/account would be far less of course. If the publication was solely based on a personal crusade and only limited evidence was gathered - or even no evidence - and great spin was place on it due largely to a personal beef (or bias) then the credibility of the account would be called even more into question.

    Came across plenty of this in my studies of Ancient History. Quite incredible how much of an account can be based on very little actual evidence from the period - one then enters the realm of novel interpretation/recollection/invention which can of course be more revealing about the times in which the author lived (or about the author themselves) than about the contemporary evidence contained or referred to therein.

    Personally I haven't read the book being discussed. Am more than aware of it of course. Wouldn't want to comment or review or critique until I had read it.
    alex3619 likes this.
  13. taniaaust1

    taniaaust1 Senior Member

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    We arent grinding to a halt now as we have already grinded to a halt over 20 years ago ... the wheels still dont run well yet. Its only just now due to I think all the joining and pushing of the ME/CFS community to those who should of way sooner listened that things are just starting to "slowly" go forward.

    I think its very important not to forget that past as its still all there hanging over our heads.. influencing those who are dealing with us every day. If we stop pushing.. we will be doomed and it could be the next generations.. our children or grandchildren, trying to sort out this mess.
    Dan_USAAZ, beaker and Valentijn like this.
  14. taniaaust1

    taniaaust1 Senior Member

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    Who's greed? As far as Im aware those who allocated the CFS money instead to other illnesses gained nothing at all. For greed to be involved, something must be gained from the action.

    (if Ive misses something about all this and there was something which was gained from it please share more about it. I havent read Olser's Web at all.. and my info is just based on what I myself know about our past from having this illness so long and living throu so many debarcles of this illness).
    Valentijn likes this.
  15. Firestormm

    Firestormm Senior Member

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    When it comes to the CDC's misappropriation of funds, then David Tuller I believe (from memory) wrote a very good (I thought) piece on this in 2011. As for anything else explored in that book I can't comment.

    However, I did recall that Tuller had said some supportive words about Hilary's book, so I dug them out - they were on Racaniello's blog:

    I thought it had made the New York Times but maybe he only referred to that particular issue in a subsequent piece.
  16. barbc56

    barbc56 Senior Member

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    There's a saying, "Be careful when ascribing motives to others". It's a slippery slope when we use these type of arguments when debating an issue. Not only can they be divisive but also a putdown of the other person. It's more constructive to describe the behavior.

    It's important to distinguish between these two types of statements when debating issues.

    Focus on the issue, not the person. This may be more difficult but it adds validity to an argument.

    That being said, we are only human and I think we have all used this type of statements at one time or another. But it's important to understand the difference between the two..

    Now on to context.
    Barb C.:>)
    alex3619 likes this.
  17. barbc56

    barbc56 Senior Member

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    I meant grinding to a halt as a metaphor not to be taken literally. Maybe another phrase would have been more apt. I was also talking about this thread not of progress in general. But I do agree that things are starting to go forward even if it is slowly.

    I am certainly not saying that we should forget the past nor denying that certain things have happened. Moving on does not mean forgetting. It means learning from the past and moving forward from there.
    Firestormm and taniaaust1 like this.
  18. biophile

    biophile Places I'd rather be.

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    It is only time to move on when the issue is resolved, compensated for, or irrelevant to the future. Where the CDC is involved in CFS, the bungling of the Lake Tahoe cluster was followed by misappropriation of funds and then a decade of Reeves at the helm. So, the CDC (and Unger) still have a long way to go to restore trust from the ME/CFS community.

    For some people, learning from the past means not trusting the CDC.
    Roy S, SOC, taniaaust1 and 1 other person like this.
  19. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Memory is unstable, an instability that is in no way unique to M.E/CFS. If one creates platforms that are dependant upon memory alone, those platforms are likely to prove somewhat unsteady. And anyway 'whose' collective experience ? Just because it's important to you, and that importance is shared with others with whom you have a common perspective doesn't mean that translates into some universal value for all M.E/CFS affected people.

    Even less does it translate into something which broadly confers authority onto M.E/CFS advocacy - and advocacy is entirely about having authority, about being believed by an audience which is empowered to effect change. Of course I have to concede that a strategy of presenting M.E/CFS patients as an oppressed minority validated by its collective suffering, could provide authority in the eyes of some audiences (are we fighting for a homeland ?). That is however an inherently alienating strategy, inviting as it does derision from those who are offended by notions of 'special pleading' - it is precisely that process which has been reprised endlessly over the last 20 years with the same miserable effect. Which is why my counsel is - "change the bleedin' record".
    I prefer to think of it as more like a Nazgûl and Sauron relationship, with King's College Hospital Mordor and Primrose Hill, Mount Doom.

    IVI
  20. In Vitro Infidelium

    In Vitro Infidelium Guest

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    That’s over complicating the issue – I assumed people would understand the use of ‘context’ in the ‘context’ I used it, as meaning the simple concept of ‘historical context’. Of course an exploration of an historical context could well involve a description of the weltanshauung of the various players within that historical context, and of course a good historian would seek to explain their own weltanshauung as foundational to their work. As far as Osler’s Web is concerned, it wasn’t written as history but that is what it most definitely is now, so to understand it, the historical context needs explication. Personally I don’t see the value in putting effort into that analysis, but 17 year old journalism doesn’t do the job and we shouldn’t pretend it does.
    Historical context is ‘information’, and vital to making a comprehensive judgement of what occurred in the past relative to the present. Osler’s Web doesn’t examine the events it is concerned with in a time deliminated way. Rather its evocation of conspiracy depends upon a notion of ‘ongoing wrong’; this is fine as a piece of journalism but doesn’t tell us anything about ‘then’ or how ‘then’ may differ from, or be similar to, ‘now’. The issue is not whether or not Osler’s Web was any good, but what use is it now ? Without historical context its use is inevitably limited the further away in time we get from the temporal circumstance that the book is concerned with.

    IVI

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