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Pacific Fatigue Lab disability testing

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by helen41, Sep 4, 2010.

  1. helen41

    helen41 Senior Member

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    Sleepy Hollow Canada
    I went to the Fatigue Lab at the University of the Pacific to have my PEM measured to help support my disability appeal. I'm hopeful now, the first time in a long time. Here is the journal of my visit if anyone is interested in taking the same approach.
    Pacific Fatigue Lab trip

    Fri
    Flew out of Vancouver early in the morning, and arrived in Stockton, Cal around 1pm. I layed around in the hotel resting up for Mon. I'm excited.

    Sat
    I slept about 11 hours- quite a few awakenings, but only for a few minutes at a time. I thought maybe I got away with yesterday and the sleep was enuf, but by 11 am both my thighs have charlie horses that won't ease up and I'm too tired.

    Sun
    Yesterday was brutal. Turns out the room service is discontinued, but luckily I bought some fruit at the station because by late in the day I could hardly stand up, let alone go out for dinner. My toilet had a leak and they had to change my room. My brain wouldn't work, I couldn't figure out how to use the room key even tho I've done it hundreds of times. A housekeeper came by and let me in. I burst into tears and she took care of the move for me while I sniveled.
    Awake many times in the night. Today I'm not as sore as I was, hopefully I'm getting over the hump.

    Mon
    1st day of testing.I was asked if I minded an audience, which of course I didn't, so an internist and an exercise physiology grad student observed. They did a reaction time test, then measured my lung and even nostril capacities. I was hooked up to an ECG and had a mask put on my face to measure the oxygen and CO2 output. A thermometer went on a finger and a blood pressure cuff on an arm. Finally I went on the exercise bike. I pedalled until there was nothing left in me, while the team monitored the various readings.They then assisted a very wobbly me to lay down and monitored me until I recovered.

    I returned to the hotel with an appt to return the next day for repeat testing. As was my usual, I actually didn't feel too bad the next morning, and was nervous that the tests wouldn't show anything. It is standard for me to crash 2 days after exertion. I didn't need to worry.

    Tues
    I was hooked up to all the same paraphenalia, went back on the exercise bike and again pedalled madly until I couldn't continue while they monitored me. At one point Dr Stevens pointed at the monitor and said "It's here" and the 2 observers seemed quite enthralled by what they were seeing. At the end they again measured my nostrils and had me do the same reaction time tests that preceded the tests the day before. Meanwhile, the 2 doctors excused themselves to run some preliminary results. Other than that one statement it seemed to me like I performed about the same both days.

    Preliminary Results
    Dr Stevens said my results were like an "early Christmas present" for her, and everyone seemed very interested, as the results go against conventional wisdom. As I understand it, there is a certain point in exercise where you move from aerobic to anaerobic work. They can measure that based on some formula and the measures of breath. This is an accepted, objective measure. In normal people and in every other disease they have tested, this set point remains pretty much the same one day to the next or improves as people get more fit. A 7% change is considered the outside parameter.

    In my case my first test had me within normal limits for a sedentary person. The second day there was a 32% change, meaning I was burning energy with much less exertion than the day before. She said they would predict it would be even less the next day based on my experiences. They will write a report saying I cannot work because altho I can rise to an occasion, I cannot sustain exertion, and apparently they write the report based on calories used in a days work, my weight, age, etc.

    Another measure they did was CO2, which is related to lactic acid production, an acid released when muscles are being overworked or damaged. They use this measure to monitor the training in elite athletes. Apparently I give off a lot of CO2 even at rest, which I presume is related to my cramping legs. Dr Stevens told me their measures indicate I actually have a very high pain tolerance, which was so validating to hear when I feel like I spend all my time winging and complaining.

    I am to wear a heart monitor and avoid a heart rate of more than 113, as that is the point where I start doing muscle damage. I need to use only aerobic energy, never anaerobic.

    The cost of the testing was $2000. At this point I am awaiting my final appeal with my insurance company before I have to go the court route. I think this was the best money I could have spent. It doesn't treat my illness, but it does prove it is real, and the testing is rigorous, with accepted tests that are commonly used for disability claims, but they are simply repeated to show a more complete picture. The outputs are objectively measured, so LTD can't claim I just didn't try or manipulated the results.

    Hope this helps explain for anyone who is considering this route
     
  2. Otis

    Otis Señor Mumbler

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    Helen41,

    Thanks for the detailed report. Did they do any cytokine measurements, or do they only do that for research?

    I hope this helps you with your appeal!

    Best,
    Otis
     
  3. Otis

    Otis Señor Mumbler

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    Helen41,

    Thanks for the detailed report. Did they do any cytokine measurements, or do they only do that for research?

    I hope this helps you with your appeal!

    Best,
    Otis
     
  4. helen41

    helen41 Senior Member

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    Sleepy Hollow Canada
    They didn't take any blood samples, altho I signed a consent for it. Truthfully, I don't know what all they measured. Apparently enuf for a 10 page report, because that is what they said they'd be sending me in a couple of weeks. If there is interest I could scan it, block private bits and post it if people want
     
  5. urbantravels

    urbantravels disjecta membra

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    Thanks so much for the report! I've been very curious about the PFL's testing and how it works. Were you able to get home OK? How bad was your PEM?

    If I ever did this testing, i would definitely draft a friend or family member to come with me - especially to get myself home after! Sorry you had to do it on your own.

    As I understand it, there is nothing really unusual about the equipment the PFL uses to do their testing - any exercise physiology lab could do a similar test if they cared to and knew the protocol. In my ideal world we'd have places to get this testing done in every major medical center.

    I also wonder what published research the PFL has done.
     
  6. helen41

    helen41 Senior Member

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    Urbantravels, She gave me a handful of articles, and these 2 studies. As I looked at them, I realized a mistake I made. Staci Stevens actually has an MA, not a Phd. Another mistake, I wrote it backwards. Anaerobic exercise is good, aerobic bad. Oops
    2007 http://www.google.ca/#hl=en&source=...ertional malaise&gs_rfai=&fp=756b5db1551239ff
    2010 http://www.ncbi.nlm.nih.gov/pubmed/20095909

    I actually did ok on the way home. A car drove me from the hotel to the airport and I used a cane. Between that and my Nexus card, the journey was tolerable and as direct as possible. If I did it again, I probably should have waited one more day before flying back, but I was anxious to get home.
    We did have flights chosen and had arrangements made if I decided I couldn't manage and wanted my sister to come get me, but for me, being alone was a good choice. I knew I would be miserable and when I feel like that I don't want to see another human being, no matter who they are.
    I agree that there doesn't appear to be any magic about the testing, which was part of the appeal for me. I assume that if these tests are what the LTD people base capability on, then they should accept the same tests showing incapability, at least I hope so
     
  7. shiso

    shiso Senior Member

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    Thank you for sharing your informative and interesting report, and good luck with your appeal!
     
  8. Anika

    Anika Senior Member

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    This is a very interesting area of testing, and your report of what it's like to actually do it (and the associated travel and planning - which is something we all have to deal with more than we'd like) is really useful.

    I have also read that more research studies are incorporating an exercise challenge because some of the abnormalities that can be seen in blood are more clearly seen or distinctive after some type of exertion. I don't know if those studies also measure the things that would be relevant to showing disability.

    Thanks for sharing, and good luck with your appeal.

    Anika
     
  9. xchocoholic

    xchocoholic Senior Member

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    Thanks for reporting this. I was wondering if they did any neuropsychological / cognitive testing before and after. My biggest problem with excercise and PEM is that my brain won't work past a certain point and I enter a petite mal / TIA / zombie phase. And I wonder what they do with those of us who can't peddle a bike for more than 30 seconds without our muscles going into spasm.

    It will be interesting to see how this sort of testing guides the medical community in dealing with excercise intolerance. It would certainly be nice if they used this sort to testing to determine that those of us with severe excercise intolerance could use a helper ... I know, in my dreams ... lol ... X
     
  10. LaurelW

    LaurelW Senior Member

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    I had this same exercise testing done (on a treadmill) as part of the Ampligen trial I was in. In the first test I did pre-drug, I had to stop after about 8 minutes, my heart rate didn't go back down below 100 for over an hour and I was wiped out for days. I don't remember how many other tests I did, but each one got better, with longer walking times, shorter recovery times and lessened PEM.

    It was great to know my aerobic threshhold, like you said, so I could set my heart rate monitor to beep at me if I went above it while walking or doing housework. It does tend to change over time, with it being lower when deconditioned and higher when you are in better shape. So if you don't get monitored like this by professionals, all you can do is guess, don't go above that, and see if you have any PEM symptoms in the next couple days. (Start about 10 beats above your resting heart rate. If you are okay, set it 5 beats higher next time.) Through a trial and error process, you can find out what your aerobic threshhold is. You have to use a heart rate monitor that has a strap that goes around your chest. The wrist ones aren't accurate enough.

    Keeping your heart rate below your AT is a good way to avoid getting PEM. That is, if you are well enough to get out of bed and do stuff. I was much higher-functioning back then and could walk for at least half an hour, even if it was pretty slow. Now I can barely walk around the block. I'm convinced my virus mutated even doing those 4 years I was well, because the CFS I have this time around is very different than the version I had back then.
     
  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Wow, they did not have you bring someone else along? I had a similar test done in NY recently, and I had to bring along another person, otherwise I could not do the testing! I had blood drawn and exhaled into bags for Nitic Oxide measurements, before and after the testing, on both days. They also did a little bit of testing for lactic acid. I might be part of an NIH study if I turn out to be XMRV and perhaps MLV postive, since the paper recently broke they are looking for the other viruses as well. I believe this is being done at Cornell University.

    I breezed through the 1st day, they do not increase the difficulty.

    On the 2nd day they increased the difficulty for me, I was wiped at the end!

    I have a "mild" case, doesn't seem mild to me!

    I have also tested postive to Ciguatera toxin.

    GG

    PS Off to Yoga and meditation. Peace.
     
  12. helen41

    helen41 Senior Member

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    Sleepy Hollow Canada
    :victory:I received my results from the fatigue lab today. After a year of knowing I'm ill and feeling like I have to prove it to the medical profession, I feel validated. The results are very comprehensive and definitive. They addressed 10 different areas of testing and described why each was important

    1 Assessment of maximal effort- normal. They point out they can distinguish between effort and malingering
    2 Reproducibility- abnormal. unable to generate the same levels of O2, heart rate, ventilation, workload or systolic BP day 1 to day 2 at anaerobic threshold
    3 metabolic responses- abnormal. 14% reduction of O2 levels test 1 to test 2. rated me on NY heart assoc scale as mod to severe impairment on day 2
    4 workload- abnormal. Anaerobic threshold (AT) declined 32% day 1 to 2
    5 cardiovascular responses- abnormal. normal ECG at rest and during test 1, heart rate dropped during test 2
    6 sympathetic response- normal
    7 pulmonary function- abnormal. measure was normal pretesting, but abnormally low lung function on both tests (should have been 85% of resting measure, was 65%)
    8 cognitive function- unclear. seems like I was within norm on the first test, but one portion of the 2nd was way below norm, so they didn't consider it valid. (truth is, my mind was like cotton batten. I think I just failed. The other tests all decreased too, just not as dramatically)
    9 temperature response- abnormal. over the 8 min exercise test, my temp dropped .3 degrees F on test one and 1.1 on the 2nd!
    10 recovery response- abnormal. this was the only subjective measure, as a result of a recovery log I kept for a week.

    They concluded the 10 page report with a summary. They say that many normal activities of daily living would compromise my ability to produce aerobic energy. Walking at an average pace is too much, and I can't do even light work.

    This writeup is inadequate, because the report is worded so well, with references, formulas and supporting data throughout. As a friend told me after reading it, "it's not worth $2000, more like $20,000." I don't believe I will have any difficulty with my LTD appeal now, and I am so grateful to have objective proof that my illness is real and debilitating. :victory:
     
  13. Kati

    Kati Patient in training

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    That's awesome Helen! Congratulations!!! Now you need to find a doctor to find out what's going on!
     
  14. helen41

    helen41 Senior Member

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    thanks, Kati. If you find a reasonable local Doc, toss them my way, would you? Have you found one to prescribe the recommended meds?
     
  15. Kati

    Kati Patient in training

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    No, Helen not yet but N. Klimas will phone the local infectious disease doctor so I am crossing my fingers.
     
  16. I'm very happy for u Helen. Not that u found out u had a debilitating illness but that u found out it exists. I think u all know what i mean.I'm struggling with my dr and shrink still.
    I may be going to a cfs dr soon. my family wnat to pay for my visit so i can get a proper diagnosis so i have something to go on for my disability hearing.
     
  17. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Congrats on some postive news, I will have to compare notes on this in regards to my testing. My report was only 5 pages, not sure of what the other differences are?
     
  18. helen41

    helen41 Senior Member

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    GG, I was surprised that my temperature dropped during exercise. I've never read about that on the forums. Did you have similar results or was it just me?
     
  19. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I don't think they monitored temp, how did they monitor yours?
     
  20. helen41

    helen41 Senior Member

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    GG, they just did it in the ear. I think I'll post a thread about this because it seems so odd
     

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