Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Briefing on the Institute of Medicine report in Washington, D.C. --webcast March 25

Discussion in 'Upcoming ME/CFS Events' started by Sushi, Mar 13, 2015.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I want to help out here. "ME" refers to myalgic encephalomyelitis. It is the name given the Royal Free outbreak. That disease, as described, is now understood to have occurred before. It has been given names of "atypical polio," "Iceland disease," etc. The physician's guide that goes with criteria for the disease say this.

    When the news media got a hold of another outbreak in the U.S., the CDC decided to come up with their own name for the disease and a way to diagnose it for research purposes. The outbreak that had been thought to be chronic EBV turned out not to be that, so someone had to correct the terminology and make clear EBV testing was not required to diagnose it. As we know, there was dispute in either the 1988 or 1994 time (forgot which one) between a few involved because a few said it should be named as "ME." But the evidence was not conclusive for inflammation in spinal cord and brain at that time, and being scientists with reputations, the majority went with accuracy of what they knew at the time.

    But, the outbreaks in the US and subsequent other cases reported to them after news media reports were the same disease. Just because they made up a different name and did a new version of a symptom list does not mean it's a different disease. If a man sees an elephant and describes it as grey with big ears and another man describes it as grey with a hose for a nose, it doesn't mean they are describing different animals. One man says, "I'll call it 'big-eared heavy animal' " and another says, "I'll call it the 'hose-nosed skinny tail animal.' "

    You can argue whether they are good or bad, precise or imprecise. But both are attempts to describe the same animal. Now, let's say a big controversy erupts. Two camps. On one side you have those who think the "hose-nosed" label is more accurate. And you have others who think the "big-eared" label is more accurate. How would you communicate to both groups that you are saying something about that animal? You might use both terms with a slash. This is actually recommended when there are labeling controversies. From Wikipedia:

    The slash is also used to avoid taking a position in a naming controversy, allowing the juxtaposition of both names without stating a preference. An example is the designation "Assyrian/Chaldean/Syriac" in the official U.S. census, reflecting the Syriac naming dispute. The Swedish census has come to a similar solution, using "Assyrier/Syrianer" to refer to the same ethnic group.​

    So, to avoid taking sides in a nomenclature controversy but to indicate what you are referring to, it's proper to use both terms with a slash. So, you wouldn't have three terms all referring to different people: "Assyrier," "Syrianer" and "Assyrer/Syrianer" with a person choosing which one. It's all just different names for the same thing. Maybe one term is not as good as the other, in your opinion. Maybe one term has had associated descriptions that are vague, not distinct enough, even if it used more often. But that doesn't mean it refers to a different group.

    And so, to show that the US "CFS" and the European "ME" is the same, the one disease, the Canadian Criteria used both terms with a slash to not take sides, to show the criteria is for what has previously been referred to as either "ME" or "CFS." And their criteria was intended to replace all previous ME and CFS criteria. It was not intended to create a third disease.


     
    Last edited: Apr 1, 2015
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  2. Ember

    Ember Senior Member

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    The International Consensus Panel disagrees:
    The Panel contends, "Research on other fatiguing illnesses, such as cancer and multiple sclerosis (MS), is done on patients who have those diseases. There is a current, urgent need for ME research using patients who actually have ME."
     
    Last edited: Apr 1, 2015
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  3. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Because it has been used to study patients with varied conditions does not mean those conditions were what was attempted to be described when the names and criteria were formed. The label "hose-nosed skinny tail animal" might apply to other animals, such as the aardvark. So, when someone goes to study the animal, they might actually be including the aardvark in their studies of the elephant. It means the label and definition for the animal is a poor one because it isn't specific enough. It means those who think the aardvark and elephant or in a spectrum of hose-nosed animals that are really the same can use the name and loose description to push their own theories.

    But it doesn't mean the people who came up with the bad term for the elephant were actually describing the aardvark. It just means they did a poor job in specifying by definition and terminology what animal they are talking about.

    Those who created "CFS" had seen the patients, patients of outbreaks, with sudden, viral-type onset. That is the disease they were attempting to describe. They just had such a loose definition and label that it got confusing later and the fact the label and definition were used in a way that included people with other diseases showed its flaws at specifically identifying the disease it was supposed to.
     
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  4. Nielk

    Nielk

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    If it was the same disease, they should have called it the same and used the same criteria. By changing both the name and the criteria, they created a new entity. If I am describing to you an elephant and say the grey animal with the trunk, you will understand that it is the animal. But, if I tell you that it is the pink animal that hops, you will not think of the elephant, even if I later say I meant the elephant.

    With all the various criteria now, we have a murky pool of all types of animals. The IOM panel comes in and says let's see how we can capture all these animals as clearly and simply as possible. They say if you are an animal with four legs and live in the wild, you are an elephant.

    If we want to capture the real elephant, we need to go back to the historical core and say grey animal with a trunk.
     
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  5. Nielk

    Nielk

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    They can't have it both ways. either it was the same disease as Ramsay's and then they should have named it the same. If it wasn't the disease ME that they were describing, then don't state that it is the same. They can't say that it is the same but, we are totally changing it; the name and definition. If they change everything about it, then it is not the same disease.

    Because of their mess up, we have over a dozen criteria and more than a handful names for this disease/syndrome/disorder/condition/illness. It has become a joke. I see people now writing ME/SEID - what is that? Or CFS/ME/ME/CFS/SEID - multi choice? Like, we are not sure what it is, so you pick and choose what you would like it to be?
     
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  6. Nielk

    Nielk

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  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I do agree that what they did caused the confusion. For practical purposes, they should have kept the same name and a few involved in the process felt that way to, but they were not the majority. I do understand from a scientific perspective that why they felt the name "ME" was inappropriate, as did the IoM committee with disease experts even now.

    I don't believe Fukuda is describing a different disease. Aren't the symptoms listed we know are in ME? There is nothing in Fukuda, that I know of, that contradicts ME. It just focuses on different aspects and is overly broad. So, it inadvertently could include those with other diseases.

    A man describes a tool. Another man describes a hammer. Would the tool description also fit the hammer? Yes. But it is overly broad so that it is not specific enough when you mean hammer. A person could say, "Hand me that tool" and another say, "Hand me that hammer" and both referring to the same object.
     
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  8. Nielk

    Nielk

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    This is from the ICC Primer regarding the name:

    This was authored by 26 experts including Klimas and Bateman in 2011. So now they are retracting their views regarding the name? How do we know that they won't retract their recommendation for the SEID name a couple of years from now?
     
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  9. Kati

    Kati Patient in training

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    They are not retracting, they are simply moving forward.
     
  10. Nielk

    Nielk

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    Four years ago, there was enough evidence, now it's gone?
     
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  11. jimells

    jimells Senior Member

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    Fukuda is an anti-definition. It was created specifically in order to re-define the illness out of existence. This is not speculation or a "conspiracy theory". We can all see the intent by reading their own words:

    [​IMG]

    [​IMG]

    This document was obtained by Craig Maupin via a FOIA request. Apparently Straus considered the illness to be an imaginary illness of bored housewives, and his view still pervades NIH, even though Straus is dead. The definition muddle is not a result of "mistakes" - the letter clearly shows that.

    We need to take a steam hose to NIH, but that is not going to happen. What with their Nobel prizes and Presidential Medals, Fauci and friends are untouchable. Until he retires, and maybe not even then, the policies will not change, and there will be no Centers of Excellence or increase in research.
     
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  12. Kati

    Kati Patient in training

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    i am moving on Nielk.
    i am advocating for research funding and supporting our ME experts.
    i will not spend my time on pointless conversations.
     
  13. Ember

    Ember Senior Member

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    I hope that you're not suggesting that patients opposed to the IOM report are failing to support our ME experts, considering that fifty experts signed a letter Secretary Sebelius to protest the IOM contract.
     
    Last edited: Apr 1, 2015
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  14. medfeb

    medfeb Senior Member

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    Fukuda doesn't just describe a different disease. It describes and encompasses many different diseases/conditions with no scientific proof of their biological relatedness. The issue is not whether ME symptoms can be see in Fukuda. The issue is what other conditions and diseases can be stuffed under the Fukuda CFS label.

    At the P2P presentation, Dr. Nacul pointed out that of the 163 unique combinations of Fukuda symptoms, only 35 require PEM. Even based on that single symptom, 128 combinations are describing some other conditon - that's 79% of the total number of combinations that are clearly not ME
     
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