Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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What tests have helped you with a disability claim?

Discussion in 'Finances, Work, and Disability' started by Singout, Oct 5, 2014.

  1. Singout

    Singout

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    Hi, everyone,

    I've been turned down with my initial disability claim and the appeal (not unusual) and am probably going to go to a tribunal fairly soon. I'm trying to figure out what to do, in addition to keeping a daily log and getting statements from others, that would convince them that this is real.

    My main symptom is fatigue, as well as OI (being treated and somewhat improved), insomnia, and cold/flu-like symptoms. I'm mostly housebound and only active in a very sedentary way 4-6 hours/day.

    I know we're all different, but am wondering what tests have supported others' claims. I've already gotten good info here about CPET testing and am starting that, but would like to know what else might help. So far all my medical tests have come back "normal." I've had standard blood tests, and am very curious about what further tests might help. My sleep test and tilt table were normal.

    Thanks!
     
  2. *GG*

    *GG* Senior Member

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    I don't think you are in the USA. So not sure, but how about a Neuropsychological evaluation? My Dr seemed to like that info, think it is rather standard in the US.

    GG
     
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  3. JalapenoLuv

    JalapenoLuv

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    Absolutely GG, that won my SSD case at appeal after it was initially rejected.
     
  4. Valentijn

    Valentijn Senior Member

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    @Singout - The one-day CPET result was the only thing that people cared about when I applied for a disabled passenger parking permit (very hard to get here), and an exemption to a Dutch language test requirement for foreign residents remaining in the country and/or applying for citizenship. The weren't interested in other lab results, and they considered the CPET to conclusively prove sufficient disability.

    Basically most of the test results you might have wouldn't prove disability, but would rather indicate something regarding the pathogenesis of the disease. Hence those tests are useful for doctors who are treating you, but irrelevant and probably incomprehensible to anyone reviewing your file for disability purposes. Having an active infection at one point in time, for example, doesn't prove that someone can't work full time usually.

    In the US, the TTT and clear EBV reactivation might help as well ... I think they're specifically listed somewhere as being an indication of ME/CFS when applying for disability benefits.
     
  5. Singout

    Singout

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    Thanks, everyone,

    @ggingues and @JalapenoLuv : what is tested in a neuropsychological evaluation?

    I think that might come out "normal" for me too--I feel like my brain functioning is "normal" in short bursts and when my adrenalin is high, it just makes me very tired to engage mentally/socially (as well as physically) for any length of time. (Although I do forget words more than I used to and find complex tasks like I used to do more challenging).

    @Valentijn thanks, that's good to know about the CPET. I'll look into EBV reactivation (although I'm not in the US but Canada.)
     
  6. caledonia

    caledonia

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    Functional Capacity Evaluation (FCE) to show how fatigue and pain impact your ability to do work
    Neuropsych Exam to show how mental issues and/or brain fog/concentration affect your ability to work

    Any labs which show up abnormal - for example, I had an abnormal thyroid lab and an elevated Epstein Barr titer.

    A record over time of your continuing disability - my judge liked this info the best. This was accomplished by going to my doctor every three months and having him document that I was still disabled. My lawyer had a nifty form for my doctor to fill out for this. Since it took two years to see the judge, I had a nice long record that showed I wasn't getting better any time soon.

    If there is a document in Canada outlining what the specific disability ruling is for Chronic Fatigue Syndrome or ME/CFS or whatever you call it there officially, use that as a guide.

    What they want to know is not really that you're sick or what sickness you have, but if you can work or not. The two tests I listed first are "ability to do work" tests. The recording of continuing disability would be aimed at the same thing.

    They would likely also want to know if you could be retrained for other lighter work based on your previous experience and training. So you have to prove that you're unable to do even the lightest work consistently at full time hours, probably called something like "sedentary".

    It sounds like you're a slam dunk for that, you just have to make sure that gets in your record somehow.

    Do you have a lawyer?
     
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  7. JalapenoLuv

    JalapenoLuv

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    They run a panel of tests-different types of memory, concentration, faking, etc.

    I think you should do everything possible to test for any diseases you have. Strengthen your CFS case if necessary. Neuropsychological testing is great for difficulty concentrating and pain that lasts six months or more. It proves your mental function is impaired. Make sure you test at your worst. Don't do anything out of the ordinary that will improve your abilities-supplements, etc, but don't try to make yourself worse either by doing anything short term, ie, staying up late, not eating, etc.
     
  8. Iquitos

    Iquitos Senior Member

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    Dr. Peterson has said that a poor result from a VO2Max study usually supports a disability judgment.
     
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  9. JalapenoLuv

    JalapenoLuv

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    http://www.disabilitysecrets.com/medicine-medication-prescription-drugs-chronic-fatigue.html

    What Medical Records Do I Need to Prove CFS?
    To help the SSA develop an accurate RFC, you need to provide them with your medical records that date back to when the symptoms of your CFS first began. These records should include all lab test results, hospitalizations, doctor visits and reports, and a complete list of medications and their side effects. In particular, the SSA has listed the following as examples of supportive objective medical evidence important in CFS claims, particularly if they are documented over a half a year or more.

    • swollen or sore lymph nodes on physical examination
    • sore throat without exudate (fluid)
    • ongoing muscular pain exhibited during repeated examinations
    • the presence of positive tender points
    • positive test for Epstein-Barr virus
    • abnormal MRI, and
    • abnormal exercise stress test, and
    • abnormal sleep studies.
     

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