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"Fatigue is not a disease" - Unger Responds, Advocates Launch Petition

Discussion in 'Phoenix Rising Articles' started by Mark, Jun 11, 2013.

  1. SOC

    SOC Moderator and Senior Member

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    Can anyone tell me what the current situation re: ME and CFS is in the US? When I first became ill, the doctors and insurance companies had no code for ME, therefore it did not officially exist in the US. CFS was the only official designation for our illness. I was told that that has changed, but the following info is not helping me understand whether we can be officially diagnosed with ME. Or what the correct code for CFS is, for that matter -- is it G93.3 or R53.82?

    Subsets, my azz. This looks like the opposite of subsetting.
  2. Kina

    Kina Moderation Team Lead

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    The problem with ME/CFS advocacy is that there is very little agreement on anything. When a group comes together with many different voices and they reach a consensus on something that is what they go with. A consensus was reached re: the CCC vs ICC. Constantly complaining about this will do nothing except cause further division.

    There are still problems with the ICC and there are problems with the CCC too. Of course not everybody will agree that it's best to go with the CCC as a starting point until the ICC is further entrenched. What I find unproductive and harmful to patients is that we never get anywhere because every time a group of advocates come together to try to do something positive, it's criticized and complained about largely based on one's own personal biases related to what they think must be done . I have seen some good work essentially torpedoed by this kind of thing before it can even get off the ground.
    Valentijn, taniaaust1 and SOC like this.
  3. Ember

    Ember Senior Member

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    This quotation is taken from the National Alliance for Myalgic Encephalomyelitis:
    taniaaust1 likes this.
  4. Iquitos

    Iquitos Senior Member

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    “We’re ready to begin the next phase of keeping things exactly the way they are”.

    That about sums up Unger and the CDC. They'll acknowledge they're feeling the heat and try to cool things off with cheap talk and no action of any real import. Everything they've proposed or done has already been done, most of it decades ago. Regurgitating the past is their way of jogging in place while claiming to be running as fast as they can.

    There is no place in modern scientific discourse for "neurasthenia." They might as well claim that it's witchcraft or bad air. That's Unger's way of extending the middle finger of her hand to patients and their supporters.

    The only improvement I can see is that they are no longer claiming that those who know the disease, like Dan Peterson, are "contaminated", as Reeves once did. But wait...Peterson didn't get invited to any of the recent government shindigs, did he? As for physician instruction, the video Peterson did for doctors in Sweden (or some other Scandinavian country) a year or so ago on how to diagnose and treat would be a huge step forward if the CDC would just put that out there. But no, they insist they must reinvent the wheel and the one they always invent has four flat sides to it. No wonder it never goes anywhere.
  5. Ember

    Ember Senior Member

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    It would help if the advocates were well-informed. AIDS activists succeeded when they started doing their homework.
    golden and rlc like this.
  6. Kina

    Kina Moderation Team Lead

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    Non-productive and harmful comments will get us nowhere. Were you privy to how decisions were made? Are you well-informed of how the consensus was reached? I was actually given some good descriptions of how the decisions were reached and it doesn't seem to go to anybody be ill-informed.

    Groups working together will get us somewhere.

    From what I have personally heard, the advocates involved are not ill-informed and have done their homework.

    I think it's best to move on and look at Unger's response than posting digs at advocates.

    If we were to wait for all the advocates to agree, then hell would likely freeze over.

    I signed the petition for many reasons. I could have held back because I disagree with a few things but I would rather have something being worked on over nothing at all. Progress takes time but it doesn't happen when advocates are bogged down with constant criticism.

    I really have nothing else to say. This of course is only my personal opinion. I actually don't believe that even if the ICC were being suggested that Unger's non-response would have changed one iota.
    justinreilly and Valentijn like this.
  7. Ember

    Ember Senior Member

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    No medical or policy experts were consulted, and basic questions about the initiative go unanswered.
    rlc and golden like this.
  8. Angelina LeBaron

    Angelina LeBaron

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    Hello Firestorm,

    The phrase "fatigue is not a disease" came from Erica Verrillo. See ProHealth post: http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=18131
    golden likes this.
  9. Kina

    Kina Moderation Team Lead

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    What medical or policy experts have you consulted to come to your conclusions regarding the CCC vs ICC? Nevermind, don't bother answering because it doesn't get us anywhere. Maybe people stopped answering questions because of the constant criticism. I really don't know. I just have a different mindset I guess. I appreciate the work many advocates are doing on our behalf and even if I have questions and think things could be done differently, I still believe that something over nothing, and consensus over constant squabbling is preferable. Just because you believe something is wrong, doesn't make it wrong.

    We have a long road ahead of us and there is a lot to be done.

    I am actually more interested in this thread regarding Unger's response and how it should be responded to.The letter has been sent after a consensus was reached, the petition can be signed or not. I am not interested in repeated criticism regarding a group of advocates who have come together to work on our behalf. The problem isn't with the advocates, it's with people like Unger.
    Valentijn likes this.
  10. WillowJ

    WillowJ Senior Member

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    that isn't even in the ICD-CM. We refused to have it because it's sexist in how it's used. Some decades ago. CDC bringing this up is a complete mystery.
  11. WillowJ

    WillowJ Senior Member

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    this is sort of complicated. If you ask them what to do with an ME patient, they will refer you to the diagnostic and treatment protocols for CFS (or this is what they have done in the past). If you ask them why they are not treating CFS as a neurological disease, they will tell you CFS has a case definition distinct from the case definition for ME.
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  12. Ember

    Ember Senior Member

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    Challenging Dr. Unger requires effective advocacy.
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  13. alex3619

    alex3619 Senior Member

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    Yes Willow. Its called a double standard, a.k.a. hypocrisy.
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  14. Kina

    Kina Moderation Team Lead

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    That again is an unproductive and harmful comment and just outright rude. I think we have people working hard on our behalf. Constant negativity does nothing. In the face of all the crap that our advocates constantly have to face, it's a wonder anybody ever steps up at all. I appreciate those people, most who are sick themselves actually trying to go forward and get things done to make some kind of a difference. Kudo's to them. If you believe that you have something better to offer, why don't you get to it rather than just criticizing the hard work of others.

    If you don't like the fact that they chose by consensus to use CCC over ICC, it doesn't translate into ineffective advocacy.

    Anyways, it's obvious anything I say is going to met with terse one-liners. That's okay, but I guess it's pointless to have any kind of conversation because I believe the advocacy efforts are fine, I don't have a problem with using the CCC until the ICC is refined a bit, I like that we have people advocating on our behalf. I suspect if you had written the letter to Unger from your point of view, the response would have been the same.
    Valentijn likes this.
  15. WillowJ

    WillowJ Senior Member

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    R53.82 is designed by DHHS for people who fit case definition for CFS (and ME? would certainly include ME patients at any rate) with no proven viral onset. Since CDC has been specifically telling doctors NOT to test for any viruses in ME/CFS patients for many years, that would be most everyone.

    However, I don't know for sure what CDC has decided or will do in the final version of ICD-10-CM or if it's out yet. Donna Pickett hasn't answered any inquiries about this, as far as I have heard. Current version can be obtained directly from CDC, but I've been extra ill and lost track of whether it was finalized.

    The code helpers on can find online in html use a variety of sources to and are not based solely on DHHS sources, so they might not be the same as the official one. They do include official sources as one of their inputs, though, so it is worrying that they are using the CFS NOS. (NOS = not otherwise specified)
  16. Nielk

    Nielk

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    Ember,

    Are you involved with advocacy? It's easy to criticize from the stands. What's hard is doing something about the status quo and trying to affect change. You seem to have a lot of knowledge about the issue. Why not get involved and help?
  17. Ember

    Ember Senior Member

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    Input from members of Phoenix Rising wasn't invited, and experts weren't consulted.
    rlc likes this.
  18. Ember

    Ember Senior Member

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    I've been asked in the past to get expert opinion for the advocates, Nielk, only to have it roundly rejected. The advocates don't respect the experts or their expertise. Unfortunately, that attitude may be of more benefit to Dr. Unger than to the patients.
    rlc likes this.
  19. snowathlete

    snowathlete

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    Personally, I can see both sides of the argument here.

    I like that people are trying to do something, and I believe that collaboration and getting several groups/people supporting an effort is a good way to go. Essential, actually.
    Change takes time, and you never ever win from the beginning, but arguments you make now set the sometimes un-acknowledged foundations for change to occur next time (or more likely, next year, couple of years...) so in this respect there is an opportunity, often, to refine what you actually want to happen as things progress, because when you ask for change, your first request never gets implemented in cases like these. In this respect I think it’s important that people don’t get disheartened by the reply and future replies like this. Its normal, and totally what I expected to happen. Change takes time.

    But I can see some of Ember's arguments and questions are valid, and I think it's right to ask them, and for this advocacy group to improve in the way they work, because it’s all a learning process and no one expects anyone to get everything right first time, and what is 'right' is often a matter of opinion in some of these things, but getting it close (something that will progress things) is still a worthy effort and I support it.

    It’s important to engage with people in the community that are asking fair questions (especially difficult ones) because it helps you improve – it’s a positive pressure, in my view...
    I think there is a point where it can become counterproductive, but I think it takes both sides to engage on somewhat controversial topics like this. So long as all parties are respectful (which I think they have been on the whole) and the views being discussed aren’t extreme (and I don’t see any of that here) then I think it is beneficial. If one person asks the questions, and the other side doesn’t acknowledge them as fully as perhaps they should, then the first person gets frustrated and is likely to vent and others might be more reticent to support it. Especially in situations where one side has more power. Just like the CDC have more power than advocacy groups, advocacy groups have more power than individuals in the community, so it’s important for everyone to keep an open mind and engage with each other.

    Would the advocacy group feel happier if Unger's letter was more engaging, maybe more open to further discussion? Even if it didn’t give any more actual ground? Yes, I think so. Same with advocacy groups when they get feedback from the community they represent. Just as we want the government agencies to listen, groups representing patients need to listen too; else it’s a flawed process and that would be the most damaging thing to efforts like these.
    I'm not suggesting that this advocacy group hasn’t done that enough, btw. I think some of the posted answers in other threads on this topic were very helpful, but I favor the greatest engagement that is possible - there is usually room for improvement. From the posts here and in other threads, it looks like some people in the community might feel that they didn’t get any chance for input (even if their input was then ignored) and so that seems like a key are where improvement could be made, in my opinion.
    I see this effort as progressive, so I support it, but I'd like to think that engagement in the future would improve and appear to be more open than it might have been this time. I’m not saying we should involve everyone, and have a show of hands, it can’t work that way, but again, more engagement, learning as we go along, taking feedback on board when the community raises it...that’s the way that advocacy groups will be most effective and have the most support from the community, which is important for the success of efforts like these.

    As with all this stuff, especially in our community with lots of conflicting views, it is important for everyone to acknowledge, and accept, that things aren't ever black and white. The world is composed of gray! Gray is progress, and we might need to compromise on the shade.
  20. Mark

    Mark Acting CEO

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    As medfeb has explained on another thread:

    As medfeb suggests, public discussion threads (which the recipients of any letter can also read while position statements are being developed) aren't always the most productive way to produce consensus and work productively on drafting an effective document so be submitted to federal authorities. Sometimes such threads can be disrupted and dragged off track by people who don't really want to work constructively in order to achieve a consensus and move forward.

    The groups and individuals listed below put their name to the letter. The phrase "...as did others..." in the above quote means that there are other people who were also consulted, but it would be wrong to give the names of those people without their permission. Any experts who agree or disagree with the letter and/or the petition are free to state their position on it publicly, and unless/until they do so, any assumptions about their involvement in its drafting or their stance towards it are just speculation.


    Signatories of the letter:

    Chronic Fatigue Syndrome,
    Fibromyalgia and Chemical Sensitivity Coalition of Chicago,
    CFS/Fibromyalgia Organization of Georgia, Inc.,
    MAME (Mothers Against Myalgic Encephalomyelitis),
    PANDORA (a.k.a. CFS Solutions of West Michigan),
    Phoenix Rising,
    The Fibromyalgia-ME/CFS Support Center, Inc.,
    Rocky Mountain CFS/ME and FM Association,
    Speak Up About ME,
    Wisconsin ME/CFS Association, Inc.,

    Bobbi Ausubel,
    Rich Carson,
    Lori Chapo-Kroger,R.N.,
    Kati Debelic, R.N.,
    Mary Dimmock,
    Pat Fero, MEPD,
    Joan Grobstein, M.D.,
    Jean Harrison,
    Eileen Holderman,
    Suzan Jackson,
    Jill Justiss,
    Mindy Kitei,
    Michele Krisko,
    Denise Lopez-Majano,
    Mike Munoz,
    Matina Nicolson,
    Donna Pearson,
    Leela Play,
    Justin Reilly, J.D.,
    Mary Schweitzer, Ph.D.,
    Meghan Shannon MS MFT,
    Marly Silverman,
    Rivka Solomon,
    Tamara Staples,
    Charlotte von Salis, J.D.,
    Michael Walzer

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