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9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
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The IACFS/ME Conference in Ottawa: Sept 22-25, 2011

Discussion in 'General ME/CFS News' started by Gamboa, Jul 31, 2011.

  1. eric_s

    eric_s Senior Member

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    I hope this will be published soon.
  2. Bob

    Bob

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    Cort made some interesting tweets about this from the conference.
    But I can't remember any details, as always.
  3. Ember

    Ember Senior Member

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    The ICC removed ME patients from the Reeves definition. But it didn't destroy the definition. So where is the harm to CFS patients? The Empiric and Canadian definitions haven't gone anywhere. They continue to define CFS and ME/CFS.

    Since the Conference, I no longer believe that the agendas being served are those of the patients. The advocates seem more like pied pipers, and their music has mostly turned to silence.
  4. Sing

    Sing Senior Member

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    Could someone explain to me what the relation is between a low White Blood Cell count and NK dysfunction. Is there one? I feel embarrassed to be so ignorant. What tests and findings show the dysfunction?
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im not sure, my white blood cells were normal, my lymphocytes , atype of white blood cell were elevated and my nk function was poor. I think its more the dysfunctional immune system thats important and the poor nk function that is common, but then im not sure if im really infected with a retrovirus or just herpes/ebv/cmv type sub group which dr lerner treats as i respond to antivirals for them, its all confusing???????????????????????????????????

    cheers!!!
  6. Sing

    Sing Senior Member

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    Well, I looked these white blood cell types up, heapsreal, and immediately I find the information vanishing. Too many names and abstract facts! But, I found that nk cells are a type of lymphocyte. I've never been to a specialist to get all these immune cell types tested or for any treatment. But what I have wondered for the past 20 years since I've been looking at my CBC results, is why is my WBC count always below normal, or rarely at low normal? And why has no doctor ever thought this was worth looking into. I am going to ask my new primary doctor this question at my next opportunity.

    Greetings to you, heapsreal!
  7. Jill McLaughlin

    Jill McLaughlin *****

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    Thank you Ember and Kati. I have heard this as well. Why the nearly complete blackout of information
    from the conference on this? The CCC was discussed instead?

    The coalition's proposal will not do what it is that they are telling patients. It will be just the opposite. They
    promise that their intent was not to exclude ME but just to reclassify CFS. But they coded it to ME. This
    will make them the same. So ME will in effect disappear and become CFS. Fits with the ludicrous
    ME/CFS theme they have been advertising.

    So the Canadian group was a perfect and safe place to get away with all this.

  8. Jill McLaughlin

    Jill McLaughlin *****

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    This was a conference of whys. Why was the CAA not there?

    There has always has been good research but it never goes anywhere. Why? It alway claims to be translating evidence into practice.
    But it ever does. (NK cell findings, circa 1990?)

    It's always about "this illness" or "our illness." Which one? CFS is not an illness it is at best a symptom syndrome which can include many
    different things. We will not solve "it" or find the cause. Has no more validity than saying X=ABCDE. Find the cause of X.

    "Chronic Fatigue" initiative will study viruses using CCC and the empiric def? Hard to come up with the why on this one.

    A valid consistent accurate diagnosis is vital and key to treatment, benefits and basic care. ME is a distinct illness, but that has to be
    mixed in with CFS, which we allow. There is no such thing as ME/CFS but we still go on and on about it. It is at best a made up term
    with different meanings and is used to mean different things. We parade around with posters and hold signs about ME/CFS, awareness
    for whatever we think it is or should be.

    Why a complete blackout of any info on the presentation or session of ICD code changes? This in reality determines the diagnosis. Why
    was this all done in secret by a "coalition" of very few and presented to NCHS, THEN put out publicly for discussion? Contrary to what
    this "coalition" claims, what this proposal will do is gut ME, the only valid diagnosis we may have. But we play the ME=CFS=ME/CFS
    shell game and make up what we believe.

    Next one may as well be on unicorns.
  9. Dolphin

    Dolphin Senior Member

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    (Don't know if I should be stepping in to this!) ME has different definitions so [STRIKE]should[/STRIKE] one could at least partly say the same thing about it.
  10. Jill McLaughlin

    Jill McLaughlin *****

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    Dolphin, you are right. But the different ME defs still all describe the same thing.
    And would be recognizable from the medical/diagnostic perspective.
    If we were asked to describe something I'm sure we would use different
    words, but we could still describe the same thing which people would recognize.

    ----
    Originally Posted by Jill McLaughlin
    A valid consistent accurate diagnosis is vital and key to treatment, benefits and basic care. ME is a distinct illness, but that has to be
    mixed in with CFS, which we allow. There is no such thing as ME/CFS but we still go on and on about it. It is at best a made up term
    with different meanings and is used to mean different things. We parade around with posters and hold signs about ME/CFS, awareness
    for whatever we think it is or should be.

    Dolphin wrote:
    (Don't know if I should be stepping in to this!) ME has different definitions should one could at least partly say the same thing about it.
  11. Bob

    Bob

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    fla likes this.
  12. Enid

    Enid Senior Member

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    Thanks for this Bob - I did enjoy the remark "the notorious British PACE" .....somebody should be embarassed here. The trouble with enteroviruses is that they do not appear to be tested here effectively. My blood tests went through Virology and apparently revealed nothing and I'm pretty certain the downward spiral started in the gut passing rapidly to polio type illness.
  13. Bob

    Bob

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    Yes, I wish that they would carry out some large scale enterovirus studies to fully investigate the enteroviral connection.
  14. Jill McLaughlin

    Jill McLaughlin *****

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    Thanks for posting. This is the only mention I've seen about the coalition's presentation from the conference.
    So are they misrepresenting to others? That coalition website is extensive. There are proposals, announcements,
    power points, FAQ's.

    I have seen NOTHING in their material about moving PVFS or any concern or mention of removing benign from the term
    benign myalgic encephalomyelitis.

    They claimed in their material that their proposal was only to classify CFS as neurological but in the
    NCHS topic packet it it showed that they coded it to CFS.



    -----
    Coalition 4 ME/CFS

    Many of you may be aware that over the next two years the manner in which illness is defined will be changing radically. Not only is the World Health Organization revamping its disease codes, but by January 2013 the National Center for Health Statistics will unveil the new International Classification of Diseases (ICD-10 CM). The latter is a totally new system of categorizing illness. How a disease gets categorized makes profound differences with respect to validity and understanding as well as reimbursement amounts and insurance issues.

    To this end, the Coalition will be sending letters and lobbying all agencies involved in the categorization process.

    Currently CFS is classified under Symptoms and Signs, Malaise and Fatigue, and the Coalition proposes moving CFS to Diseases of the Nervous System. Post Viral Fatigue Syndrome is currently classified as Other Disorders of the Brain, and the Coalition proposes moving PVFS to Diseases of the Nervous System also. ME is currently referred to as Benign Myalgic Encephalomyelitis and the Coalition proposes to redefine ME as Myalgic Encephalomyelitis (benign). The major point here is that ME is anything but benign to one who suffers with it, but the WHO and the NCHS insist on keeping the word benign because ME does not lead to imminent death. [Ed. note: perhaps non-fatal would be a better descriptor than benign!].

    The proposals take CFS and PVFS out of the just fatigued category and separate them from psychological disorders that also cause fatigue; they would bring the USA into alignment with the WHO classifications already in effect in Canada and Germany; and they support the recommendation of our CFS Advisory Committee to the Department of Health and Human Services.

    If asked to support the Coalition 4 ME/CFS, please give their proposals careful consideration!




  15. Camilla

    Camilla

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