1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
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First IOM meeting scheduled - Jan 27-28

Discussion in 'Institute of Medicine (IOM) Government Contract' started by medfeb, Dec 26, 2013.

  1. Delia

    Delia Senior Member

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    Not at all. There is complete misunderstanding here.

    Jen was not censored. In fact the opposite has happened. She was doing a great job, prior to being pressured to change her terminology.

    [/Quote="Ember"] With all due respect, ME patients don't receive favourable treatment now, yet many covet that diagnosis while dismissing the cost should others unfortunately lose theirs.[/quote]

    Whoever said anything about dropping ME? The goal is to get to ME.

    Nobody knows what ME is. (Except advocates) The bridge to get there is the imperfect MEcfs.

    To even get to a real non IoM table, or even discredit the current IoM report) we need a movement. We won't get a movement if we don't understand our own message, and our needs to get non ME or non CFS people informed.

    I call it second tier in respect, not disdain.
     
  2. Ember

    Ember Senior Member

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    Sorry to confuse you. In mentioning the cost to others of losing their diagnosis, I was referring to the cost to CFS patients who don't meet a diagnosis of atypical ME and stand to lose their current diagnosis as a result of “'CFS'-needs-to-go” advocacy.
     
  3. Delia

    Delia Senior Member

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    Oh! I see.


    Well, CfS is already going to mental illness in the US medical coding starting October 2014. So...

    My point on the nomenclature is actually let's use ME/CFS in the first round of raising awareness and fighting the IoM to build layperson support and build momentum. We have to have them aware and on our side.

    As well, too many living with CFS don't know what's going on, or a lot don't know about ME or even the term ME/CFS. We need them, but also, I believe we should help them.


    But to get back, I guess to the original point of the thread I must have derailed, but I came in when the discussion was on the name.

    My position is and has been non-engagement with the IoM. This is the strategy I believe and as long as I'm not the only non-engager, all is well!

    I won't draw the line at not working with the engagers of good will. Anyone who in my gut feels to me to be not in good faith, ie: individuals with too CAA of a position- I don't trust. And I won't work in conjunction with them.

    This is what I mean about drawing lines. Being very careful. Our movement can have disagreement within it, despite many people's feelings that movements need full agreement. They really don't! I know! I've been in many successful ones myself, that can harbor reasonable disagreement,. As well we have history to teach us. I just happened to study successful movements in my early years of organizing and advocacy. That's why I know this.

    It's all good.... As long as:

    We find ways to agree to disagree on important details but I think it's safe to say we ALL oppose the IoM contract.

    It's safe to say we all want to rise out of our beds and get real awareness and respect that we are dealing with serious illness(es) here!

    We all want real science and Medicine and access to real supports.

    That's our real message.

    Our harm is in being too divisive on our respective positions. Once it gets to a point where it hurts the movement or keeps it from essential work, or Keeps important people from working together, success can't happen. The group (any group) loses before it's begun.

    (This doesn't mean each side can't try and persuade each other, or discuss, please don't get me wrong, but in many ways the ship of engagement or non engagement of the IoM has sailed.)

    And it's why, I feel the real complexities of this can't be dwelled upon (in a way that stumps our progress right now) until after we get to the first round. We have got to get a movement off the ground!

    It won't be a perfect message for all of us, but we need the message that reaches people. And we need to move forward on that front.
     
  4. Ember

    Ember Senior Member

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    A message that's antagonistic to CFS patients will likely be limited in its reach.
     
  5. Ember

    Ember Senior Member

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    Why challenge normal word usage when it makes more sense to demand that ME patients be removed from the broader category of CFS? That's the language that the experts use.
     
  6. Liz Willow

    Liz Willow

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    Keep in mind that the last name change movement that stuck (started by Rich Carson in 2008) and resulted in "ME/CFS" being used has backfired. The idea was to get the historical background and definitions of ME recognized and used. Instead, ME has been subsumed into "CFS".

    I'm stating this just so people are aware of the land mines we face. While we should engage those diagnosed with "CFS" who have never heard of ME, care must be taken that media and others don't report on demonstrations or the like with "ME/CFS", thus continuing the problem.
     
  7. Ember

    Ember Senior Member

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    The International Consensus Panel also recommends removing ME patients from the broader category of ME/CFS (as defined by the CCC): “Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves,London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.”
     
    Last edited: Jan 4, 2014
  8. WillowJ

    WillowJ Senior Member

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    Hi, I am not a coding expert, but it looks to me like many of the other conditions listed have other active codes (not 323.9*, or even necessarily in the 3 section at all). So I assumed the significance of "back reference" was that it meant previously. I don't know much about coding, so it's possible you're right, of course.

    I have trouble using those huge pdfs at CDC, with more PDF corrections, which is why I use the unofficial sites (because they are in HTML and easier to navigate). I understand they may not match exactly because they reportedly draw on industry sources as well as DHHS sources.

    Of course, you're correct that the main takeaways are that docs are not using it, and it's used by a number of other diseases also (thus, it can't be used to track the incidence or mortality of any one condition).
     
  9. medfeb

    medfeb Senior Member

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    WIllowJ

    I agree - those files are a pain to deal with. The interface you pointed to is much easier to query.

    The 'back reference' link appears to list the sections of the alphabetic index that contains 323.9 codes (highlighted in yellow) plus the other entries in those sections, even if the code is not 323.9. Look at the entries under 'infection' - brain and cerebral fever are 323.9 but not septic infection which has code 324.0.

    That entries in that interface do appear to match the NCHS files.
     
    WillowJ likes this.
  10. WillowJ

    WillowJ Senior Member

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    yes, thanks. I noticed the yellow ones, which mostly seem to be vague categories, idiopathic diseases, and variations not otherwhere classified.

    323.9 itself is for encephalitis, myelitis, and encephalomyelitis not falling under any of the specified causes in the 323 chapter, some of which we might prefer to use when we know the association.
    http://www.icd9data.com/2012/Volume1/320-389/320-327/323/default.htm

    Of course, things will improve when we get more research. But who knows how long that will take?

    Thanks for checking against official documents. :)
     
  11. Izola

    Izola Senior Member

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    So we M.E. prisoners get released--with what? $300 and a bus ticket home? just kidding. Wonder what the insurance companies are doing to prepare for our success.
     
    Wally likes this.
  12. Izola

    Izola Senior Member

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    We do need your expertise. I can't imagine better trainers than the ones you had. I wish I could give you names. My brain is very broken. I can chart the daily decomposition.


    Delia: Dr. John Davis physician, Chicago, still, I think is probably a friend. Davis' dad was president of the American Political Science Association (early '70's) Another went on to head the Southern poverty Law Center. He's the most likely, to my knowledge maybe as a trainer of trainers.The names are so "there" but yet not.
     
  13. Izola

    Izola Senior Member

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    Ren: You simply must trim that beard.
    The brain may have been mapped but golly, look at the terrain on mine. Brains are mapped but not mapped with the genomics footnotes.
    Did you know that Eric Kandel is all hooked up with third degree Evidence Based Medicine. They're huddled in mass trying to work out "psychiatry" with modern scientific theories, (really just theories) to bring in a new era of psychiatry. This new era includes neurasthenia with all the "soft" signs of ME/cfs. Its all so very similar to that very neurasthenia invented in the early 1900's by doctors as their way of saying "Women! Weak and lily-livered. This is no disease." That's so brilliant!

    They also bring up genomics, birthed full grown in this new age . . . Ducks, I hear ducks. . . Iz
     
    medfeb likes this.
  14. Izola

    Izola Senior Member

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    After all that the people branded with CFS had to go through to get here today, they deserve a little more medical attention, if, in fact, they are getting any at all. I don't know how strongly the two are tied, but if they are, give them the medical attention.
     
  15. Izola

    Izola Senior Member

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    Straus and Wessely certainly aren't scientific dynamos. I understand your question. Its the answer that shape shifts and moves about the room.
     
  16. Izola

    Izola Senior Member

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    I vote we keep those who have been with us on the long haul. But, no matter how we bicker and dispute, its not going to be in our hands unless we make it be in our hands. And if we do that there we go again, the less powerless, advocating for the powerless. Right now we have our experts, our advocates and a wee bit of sympathy. Pathetic. That's above where I've been for almost 30 years. But I don't parade it. We're in this together. That feels good after being a "reject" for so long.
     
  17. Andrew

    Andrew Senior Member

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    According to the ICC-ME, CFS is ME with an incorrect name.
     
    Roseblossom and Snowdrop like this.

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