Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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IOM and the name game

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Feb 19, 2015.

  1. Nielk

    Nielk

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    Read more here.

     
    Last edited by a moderator: Feb 19, 2015
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  2. Ren

    Ren .

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    Good points.

    Maybe it's fairly common knowledge, but I only recently learned that "the flu" / "influenza" is from Italian "influence", as it (the flu) was perceived to be the result of "unfavorable astrological influences".

    Since pwME often describe disease onset as following a flu-like illness, maybe "chronic unfavorable astrological influences" CUAI would be appropriate? ;)

    .
     
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  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    Meanwhile there is a whole subset of people we are not hearing from regarding the report because they are so very sick that just continuing with life is over exerting. Even PEM as a symptom is almost a joke at that point. I have several opinions regarding the report but at this moment what I feel is it's all so much blah dee blah blah. It might be an interesting even entertaining (for some, especially well people) but for the very sick it a matter of life and a sort of limbo like being neither dead nor truly alive.

    Bateman and others can chime in with cheerleading vigour rah rahing for us, presently I'm finding it meaningless to the horror of being this ill without relief no matter what lovely concessions are being offered up.

    This debate isn't just academic. It's not just about reason and logic. that's not to say that R&L doesn't have its place but lives are at stake. Lives that have no voice. We have no idea of their level of daily suffering. We simply don't hear from them any more.

    That is to say, while there are obvious good things to say about the report I the real world of people suffering right now being ill it's a long time in coming and can seem, for all it's good qualities to be too little too late. While the people of gov't bureaucracies and medical authorities seem to need to move forward in this fashion (slowly--with baby steps) people who are ill might have already been waiting some time for the end game. So seeing this progress perhaps doesn't come across as the major accomplishment that the cheerleaders are viewing it as.
     
    Last edited: Feb 19, 2015
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  4. Dolphin

    Dolphin Senior Member

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    That wording suggests there is money to be made by the HHS with the name. I haven't seen evidence there is.
     
  5. Nielk

    Nielk

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    You would not see the evidence because HHS is not the one making the money. They protect the interests of the health and disability insurers who do not want to spend the money.
     
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  6. Ember

    Ember Senior Member

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  7. snowathlete

    snowathlete

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    So let me just check I read that right, perhaps I didn't.

    The original description didn't even include the symptom PEM which we all agree is essential to differentiate the disease from others. So how do we even know this is the same disease as ours being talked about? That's a pretty major fact. Or perhaps it does say it but I missed it, in which case my points not valid.

    Regarding the main theme of this article, I think that had HHS wanted to they could have renamed the disease without spending a penny. It seems like a bit of sensationalism to me.

    There is also a logic gap here too. If HHS want to keep us down why change the name at all. CFS would continue to be perfectly adequate if that was the intent. doesnt make sense.
     
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  8. Nielk

    Nielk

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    This is Ramsay's definition

    PEM is bolded


    If they didn't want to keep us down, why did they not listen to the medical experts in the field and adopt the CCC ten years ago?
     
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  9. snowathlete

    snowathlete

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    Thanks for the relevant detail to clear up that point.
    Regarding your question, I think ten odd years ago when CCC came out the behaviour of gov't (HHS and other agencies) was consistent in that it was trying to keep us down. They gave us absolutely nothing. But in recent years things have slowly but steadily begun to change. Advocacy has improved a lot over that time and there is better science than there was (though we need much more still).
    People in position in these agencies sometimes change their views. More often though they move on/retire and someone new comes in with different views.

    I think we have to see that to some degree that has evidently happened.

    The views expressed in the article being discussed in this thread is ten years behind the times.
     
    Last edited: Feb 19, 2015
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  10. Ren

    Ren .

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    It could be argued that a new name/criteria creates another layer of confusion and chaos, while bureaucrats (1) dump a term (CFS) they've long been criticized for - and (2) avoid adopting CCC or ICC?

    Where's significantly increased funding for biomedical research? Where's acknowledgement of CBT/GET harm?

    .
     
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  11. alex3619

    alex3619 Senior Member

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    There are lots of reasons this could be. For example, this is bureaucratic, and bureacracies often do the simple thing. Or there is political pressure to do something that has an authoritative edge ... and so they contracted the IOM. Or someone had a "bright" idea and pushed it, and before long they were committed.

    Its also a mistake to presume that they are deliberately operating for an outside agenda. If outside organizations are pushing their agenda at the NHS for example, or individuals inside it, and make a persuasive case, they might be induced to do something even though they are not really concerned with the outside agenda. If many organizations are pushing something similar, then the impact could be pervasive without any corruption being present. That is our current political reality, not just for ME but for issues like pollution, climate change, free trade, refugee politics etc. etc. etc.
     
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  12. alex3619

    alex3619 Senior Member

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    This is a primary concern. If change does not bring change for the better, then its a failure. To that I would also add we need medical education on the existing science ... too many doctors know too little about developments in the last several decades.
     
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  13. Dolphin

    Dolphin Senior Member

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    I still am not convinced. Indeed, it seems to me to be a wild conspiracy theory with a very low probability of being true. The HHS could have done an internal report if they had something specific in mind they wanted.

    Instead they got an external body with independent experts. These included two patients and one parent of a severe patient as well as several ME/CFS experts. I am not at all convinced these people would spend a lot of time and effort to help design a document to help insurance companies.

    And if one wanted to help health and disability insurers, it would have been written differently, more denigrating the illness and the evidence and blaming the patient.

    Also, from insurers' point of view, I can't see why "systemic exertion intolerance disease" would be better than "chronic fatigue syndrome".

    So for these sorts of reasons, this theory doesn't add up for me.
     
    Last edited: Feb 19, 2015
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  14. Nielk

    Nielk

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    If HHS was concerned to do something meaningful for us they would have given us funding twentyfold if what they have been funding.

    I don't care about what they say. I pay attention to what they do or not do.
     
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  15. SOC

    SOC

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    HHS was not going to randomly increase our funding twentyfold with the information they had until now. That was a large part of the point of the IOM committee and report -- to gather more current information using an independent source (not an understandably biased source such as patient reports or only doctors earning money treating the illness). Now they have a very clear, independent, theoretically objective report that says unequivocally that ME/CFS is a grossly underfunded very serious disease. Now the powers that be are in a solid position to justify asking for, no, demanding, more funding for research into the condition.

    It helps to understand how the politics and research work. Like it or not, there's a process to follow and hoops to jump through before things can happen. Funding doesn't come out of nowhere. There have to be political advocates who can convince the bureaucrats that funding is needed. Until now those political advocates were largely toothless. Most politicos, who control the funding, think CFS is a non-illness unworthy of funding. Now our advocates have the kind of information politicos want -- funded by the government, theoretically objective, and very, very clear about the impact of the disease. Our political advocates are no longer toothless. This is huge.

    You never leap straight to the end in these things. You don't go from nothing (no respect and no funding) to everything overnight. It's a process. There are steps to work through. We don't have to like it to acknowledge the reality of it. The IOM report, which could have taken us backwards or given us a baby step forward, has instead given us a giant step forward. Now we need to take the next step -- education of physicians and a massive increase in research funding.

    Would it have been faster and easier for us if HHS had simply allocated more money to ME/CFS research? Probably, if all the money didn't go to psych-based research and/or denied to legitimate researchers into biomedical research (as happened to Lipkin). Was HHS going to allocate significantly more money to a condition widely believed to be simple laziness? Not a chance. Was the opinion of the illness going to change in the political arena based only on the word of patients and the doctors currently treating them? Not any time soon.

    We needed this step. It's a necessary, if irritating, step. None of this is about what's right ethically or true medically. It's about politics. Funding doesn't come from being right or even in dire need. It comes from having political clout.

    We work with the system, or we die. That's the reality, ugly as it is. Up until now we've been dying. I'm willing to work with the system because that's what it takes to get what we need -- respect and research funding.
     
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  16. Valentijn

    Valentijn Senior Member

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    I think at least some in HHS were hoping for an even weaker name and definition, based on what the IOM did to GWS. But this time they gambled and they lost big time.

    They might be counting on their ability to simply ignore the report and not take action on any of the recommendations. But they've still given us a very powerful tool to use against them if they do.
     
    Last edited: Feb 20, 2015
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  17. Valentijn

    Valentijn Senior Member

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    I think some good explanations have been given. Another possibility is that there is likely some internal disagreement in HHS. We know what some of them think due to the FOIA, especially the "mean girls" most directly involved in dealing with us. But even in those emails there were some hints of different attitudes from others in HHS who they were corresponding with.
     
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  18. alex3619

    alex3619 Senior Member

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    How many reports did they commission on GWI? If they are not happy with a report they simply commission another one. However in the time it takes to commission multiple reports the science is evolving. The science will at some point overtake the politics.
     
  19. alex3619

    alex3619 Senior Member

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    I have thought the same, but we will only be sure there is political change if it actually happens.

    Or to use a famous phrase: Show me the money!!!
     
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