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CFSAC meeting Oct 3-4, 2012

Discussion in 'General ME/CFS News' started by Andrew, Sep 11, 2012.

  1. alex3619

    alex3619 Senior Member

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    The diary comment keeps coming up with I talk to people going through disability claims. Its not only useful for assessors, but if it ever goes before a judge it could make or break a case.

    The claim that disability via mental illness is not in any way preferable to one via CFS (ME of course not being mentioned) was interesting. However, I do note that every time I have heard it discussed, its about how easy it is to be accepted in front of a judge, not during the initial formal process.

    I was as closed to shocked as I could be by the spokesman on these issues. A bureaucrat who actually sounds competent? Its nice to see, and in particular that he is willing to go further and assist committee members to get additional information they are asking for.

    The other issue I think that kills many applications is the criteria: if its not clear that the person cannot do any job, whether or not such a job exists, disability is denied.

    Bye, Alex
     
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  2. BEG

    BEG Senior Member

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    Sorry Madietodd, I've misplaced my notebook and my brain at this moment! I'll PM you.
     
    madietodd likes this.
  3. justy

    justy Senior Member

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    I just have a screen with horrible music - anyone else have this problem. I tired closing the page and opening new one, but it didnt work.
     
  4. Valentijn

    Valentijn Activity Level: 3

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    They're having a break now. Then public comments, then lunch.
     
  5. justy

    justy Senior Member

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    Thank you - thats what i thought - but got confused by a comment in chat. That music is driving me crazy - can it be muted? cant find a button to do that.
     
  6. justy

    justy Senior Member

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    They are back!
     
  7. BEG

    BEG Senior Member

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    Alex, you are right on with this. I was asked by the attorney's office if I could work in a restaurant sitting down and wrap a napkin around silverware.
     
  8. SpecialK82

    SpecialK82 Senior Member

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    Absolutely heartbreaking, the last advocate talking about suicide. Im so glad that the committee stopped the public comments to address the suicide issue
     
  9. shannah

    shannah Senior Member

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    Good for Bob - He's taking up the mantle!
     
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  10. SpecialK82

    SpecialK82 Senior Member

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    God Bless you Robert Miller :)
     
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  11. BEG

    BEG Senior Member

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    Right on, Special!
     
  12. BEG

    BEG Senior Member

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    "Fund it and they will come!"

    Great job, Robert Miller.
     
    shannah, alex3619 and justy like this.
  13. jimells

    jimells Senior Member

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    I don't understand how a diary would help. SS constantly emphasizes that patient-reported symptoms are useless, since we are all liars and welfare bums.

    Only objective medical evidence counts. I have damn little of that, since gatekeepers like tests that rule out other diseases, but dislike tests that would actually prove the extent of my impairments. Results that suggest impairments, like alpha-wave intrusions, slow cognitive processing, MRI hyperintensities, positive ANA, etc. are dismissed as 'non-specific'.

    'BEG' should be my handle, since that's what my life has been reduced to. I have been waiting for an Administrative Law Judge hearing since April 2011. Other folks in my area have been waiting for over 18 months. I first applied over five years ago. My disability lawyer reports that claim acceptance rates by ALJs for all disability claims are way down compared to recent years. He has no idea when I might actually get a hearing date.

    If Social Security really cares about reducing suicide rates, they could start by approving claims in a reasonable amount of time. When it comes to Medicaid, the State of Maine has 45 days to make a decision, by court decree. After that, provisional coverage is automatically granted until the decision and appeal process is complete. It is well past time for SS to adopt a similar policy.
     
    Valentijn likes this.
  14. leela

    leela Slow But Hopeful

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    Yeah, wow, Bob Miller really nailed it.

    Meanwhile, why does the guy with the grey mustache STILL, since the spring meeting say CSF every time?
    Why have his colleagues not taken him aside and explained that if he sits on the committee it might be prudent to know how to distinguish between cerebral spinal fluid and chronic fatigue syndrome?
     
  15. alex3619

    alex3619 Senior Member

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    Hi Jimells, disability hearings are severely impacted. There have been cuts in staff, and at the same time an increase in cases to be heard. Thats two factors increasing the time. Under a regime of cost cutting I cannot see that hearing times will improve - not for years perhaps. I think this is both highly unfortunate and short sighted. I suspect, though I haven't seen any real analysis, that this will increase costs in the long term. In other words, by slashing budgets they (or somebody) will have to pay more. Bye, Alex
     
  16. LaurelW

    LaurelW Senior Member

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    Does anybody know if the public commentary is already posted somewhere? I've missed a few of them.
     
  17. Hope123

    Hope123 Senior Member

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    Impressions today:

    - CDC continues to ignore both CFSAC advice and advocates' suggestions that the Toolkit and Resource guide be taken down and revised. However, both Dr. Belay and Dr. Unger look uncomfortable. We need to continue to turn up the heat.

    -- Missed the social security talk. One thing that helped me was having former employers write about how much I enjoyed my job and how hard I had worked my whole life.

    -- Some CFSAC members do not understand the depths of this illness. We need to keep hammering away that suicides have and do happen to the best of us and it is not merely due to depression. Suicide can be a rational decision given the difficulties of a life with CFS.

    - Jimells, certain tests are specifically mentioned in the SS ruling and might count more, like exercise testing/ tilt table/ viral titers.
     
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  18. jimells

    jimells Senior Member

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    Did they ask if you could do that task on a regular and continuing basis? That seems to be a detail that is conveniently overlooked. I used to write computer software for a living. According to the SS claim deniers I've dealt with so far, if I can be propped up in front of a monitor, then I can still do that kind of work. Morons.

     
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  19. Andrew

    Andrew Senior Member

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    Looks like I missed a lot. I'm at the live feed now and music is playing, so I guess they are at lunch.
     
  20. jimells

    jimells Senior Member

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    After hounding the doctors for over two years, I did finally have a tilt table test: it was 'normal', but it was done by cardiac people, who were mostly looking for heart problems, which I don't have. So far I haven't been able to test viral titers. The doctors just say, "Almost everybody tests positive for those viruses". I'm slogging through the ICC Primer. If it says something about viral titers, maybe that would help my argument.
     

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