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Guilt by association

Discussion in 'Action Alerts and Advocacy' started by Snow Leopard, Sep 30, 2012.

  1. Snow Leopard

    Snow Leopard Senior Member

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    One of the things that disturbs me is the statement "ME (or CFS) is a physical/real/non-psychological disorder" that is almost a pre-requisite part of a media story in many parts of the world.

    The problem with this is that it begs the question and potentially suggests the opposite. Eg guilt by association.

    Wouldn't it be great if journalists, instead of making this statement actually reported on the many (albeit non-specific) biological abnormalities that have been associated with ME or CFS?

    Most readers are truly ignorant and honestly confuse the concept that there are no specific and agreed upon biomarkers with the idea that there are no biological abnormalities worth worrying about. It is this ignorance that is reflected by many journalists when writing articles.

    So when commenting on the internet, or speaking to people, never say "ME is a physical disorder", but try to jump straight to the point and mention the many abnormalities that have been discovered.

    Don't attack people for being ignorant, but try to simply re-educate them in a polite manner.
    WillowJ, beaker, GhostGum and 10 others like this.
  2. user9876

    user9876 Senior Member

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    The physical/rea;/psychological debate is just the wrong debate it sets the wrong agenda, It seems designed to push the debate into the psychiatrists relm. Hence it feels like they are the ones repeatedly pushing the question.

    I think we should talk about the interesting science (immune system issues, rituximab,....) along with the very and large range of symptoms rather than getting into a debate designed to protect one interests hold on funding.
    WillowJ and L'engle like this.
  3. Enid

    Enid Senior Member

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    I would hope it isn't a physical/psychological debate any more, there is just too much evidence of pathology findings out now, and widely available. To any rightminded observer one is clearly ill and a little feeding to my own Docs and family has aided them and me. But I guess you can't dispose of the psych lobby completely just yet as as Pemberton et al "games" show us.
    L'engle likes this.
  4. Vincent

    Vincent Senior Member

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    They various governments of the world and stonewalling and deflecting because they could very well be involved. The government, at least in the us, has a long history of experimenting on it's citizens, in secret.

    It recently came out that in the 50s in a St. Louis housing project the us military sprayed citizens with radioactive particles. Lets not forget the Tuskeegee experiments where black men were injected with syphilis.

    http://theintelhub.com/2012/10/03/i...the-epas-monstrous-illegal-human-experiments/


    Another study where they secretly injected people, against their consent, with plutonium.

    US Government Program Secretly Injected Citizens with Plutonium, Uranium
    http://naturalsociety.com/us-government-program-secretly-injected-plutonium-uranium/


    http://www.bariumblues.com/mycoplasma_nexus.htm



    http://www.anapsid.org/cnd/activism/skullvalley.html

    This just scratches the surface. If anyone is so inclined a quick search with your favorite search engine will produce tons of results. When you couple a history of stonewalling, dismissing, and obfuscation, along with the known history of government experimentation, government could be implicated.
  5. Scarecrow

    Scarecrow

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  6. alex3619

    alex3619 Senior Member

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    We have lots of biomarkers. What we lack are diagnostic biomarkers. The issue is that many of our biomarkers are shared with other serious diseases like MS. If a marker is shared, its not diagnostic. Now its entirely possible that many of our biomarkers are indeed diagnostic, but validating them as diagnostic is a long and complicated process. For one thing they have to show that such markers are not present in other, similar, diseases.

    Bye, Alex
    WillowJ, L'engle and ukxmrv like this.
  7. beaker

    beaker CFS/ME 1986

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    Is there an easy access list posted somewhere for folks to be able to go back and refer to when responding to articles on net or local paper and whatnot.
    My computer and personal medical records runneth over and I have no energy at this point to organize better...... sorry wish I could.
  8. user9876

    user9876 Senior Member

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    Could there be certain combinations of biomarkers that could be used as a diagnostic tool. So each one individually may not discriminate but together they may discriminate between a set of similar diseases.
    WillowJ, L'engle and alex3619 like this.
  9. alex3619

    alex3619 Senior Member

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    Hi use9876, I have said as much on several occasions. Combinations of biomarkers have not received adequate study. Furthermore, we have no idea if any biomarkers cluster in subgroups - I have never read research on that anyway, with one exception.

    The closest we have to a combination biomarker is the 37 kDa Ribonuclease L, in combination with elastase. While MS and RA share the cleaved RNase L, they don't have elevated elastase.

    Bye, Alex
    L'engle likes this.
  10. Snow Leopard

    Snow Leopard Senior Member

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    Absolutely. I have heard such ideas being mentioned before, but I am not sure who/if it is being studied at the moment. I know someone over here wants to do that, but no funding...
    L'engle likes this.
  11. user9876

    user9876 Senior Member

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    I keep thinking that there needs to be diagnostic guidelines for cronic fatigue so that when a patient presents with fatigue as a main symptom it allows a doctor to walk different paths with different tests so that they can get a better diagnosis. Currently it seems too easy for a doctor to just say oh you are depressed or you have ME without thinking about what might be wrong (hence to high misdiagnosis rates).

    From what I remember about probability theory, baysian or evidential reasoning you would have a number of hypothesised conditions given a set of symptoms. So you might have quite a large hypothesis set with apriory probabilities then add in a symptom and change the probabilities of different hypothesis. So here a test or sign or symptom is a good one if it helps reduce the overall set of hypothesis rather than if it identified a particular one. Obviously as you get down to a small set of hypothesis then a test that identifies 1 as most probable is what you want.

    In this it is important to consider both the probability of a hypothesis given a symptom and given the absense of a symptom. Since not having a symptom might not rule out a hypothesis.
  12. L'engle

    L'engle moderate ME

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    Keeping composure in the face of irrational arguments/ignorance is a victory in itself. :cool:
  13. snowathlete

    snowathlete

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    I read that elastase is produced by phagocytic cells, in order to allow them to move through connective tissue, and it was thought that the elastase was the cause of the degradation of the long form RNase L to the short form version in ME/CFS patients.
    But elastase not being elevated in MS and RA doesn't appear to support that...
    What do you make of that Alex?
  14. golden

    golden Senior Member

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    I think this is very true. But the idea it is psych in origin is perpetuated by the treatment being CBT.

    Also doctors still believe this and so you start by speaking to a brick wall of hardened, outdated attitudes.

    HWhat are these bio markers or abnormalities though as i dont even know myself! Its the one thing that bothers me the most.

    I wish it didnt.
  15. alex3619

    alex3619 Senior Member

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    How I interpret this is that there are multiple pathways leading to cleavage of RNaseL. There are three (iirc) known enzymes that can do this, but in ME it is elastase that is elevated. Elastase may also have a wider range than just phagocytic cells. We do not know enough.
    merylg and snowathlete like this.

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