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Lerner files a patent application for diagnosing an Epstein-Barr virus based ME/CFS

Discussion in 'General ME/CFS News' started by A.B., Apr 16, 2014.

  1. A.B.

    A.B. Senior Member

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    Last edited by a moderator: Apr 16, 2014
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  2. Hip

    Hip Senior Member

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    You can change the title yourself: see Thread Tools towards top right of page.
     
    Last edited: Apr 16, 2014
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  3. A.B.

    A.B. Senior Member

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    Thanks for the tip (and the mod edit).
     
  4. Ema

    Ema Senior Member

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    It irritates me with the fire of a thousand suns every time I see the Energy Index...that says one can work a full time job at a level 5 BEFORE even in recovery.

    I appreciate Dr Lerner's work but that is so detrimental to ME/CFS patients who are on disability.

    I also have trouble knowing that he is not using the best testing for Lyme. It's not so simple to divide patients into definitive groups if one test says positive for Lyme and another test says negative. I don't know how to resolve that problem given that is where we are at with regards to Lyme antibody testing, but it's still a problem.
     
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  5. minkeygirl

    minkeygirl But I Look So Good.

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    I've always had a problem with Lerner's Energy Index. I think it's too broad and too narrow at the same time. I don't fit any of his criteria and wouldn't show it to any physician treating me.
     
  6. A.B.

    A.B. Senior Member

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    I noticed this weird rating scale as well. There's a huge jump between 4 and 5. Being out of bed for 4-6 hours a day is not one step below working 40 hours a week. In the former scenario, the patient is presumably at home and free to manage their energy and activity levels as appropriate. Being able to reliably work 40 hours a week requires a good amount of stability which a ME/CFS patient just doesn't have until they're close to fully recovered in my opinion.
     
    Last edited: Apr 16, 2014
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  7. Hip

    Hip Senior Member

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    I always find the activity level index used by these forums (found in the personal details page) is very easy to understand and apply:

    0 - Bedridden constantly
    1 - Mostly bedridden
    2 - leave house once a week, concentrate 1/hour a day
    3 - leave house several times/week, two hours work/activity at home a day
    4 - 3 to 4 hours of work/activity a day
    5 - four to five hours/activity a day
    6 - six to seven hours/activity a day
    7 - able to work full-time but with difficulty
    8 - near-normal activity level but still symptomatic
    9 - normal activity level, mild symptoms
    10- fully recovered

    I am not sure who set this scale up (perhaps it was Cort), but it's quite good.

    Other scales include the Karnofsky Performance Scale, and David Bell’s CFS Severity Scale.
     
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  8. minkeygirl

    minkeygirl But I Look So Good.

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    That scale doesn't work for me either. I can get out of bed every day, but I live on the sofa and get up to get meals and go to the bathroom. On a good day I can do a load of laundry and do a few things around here. I only go out to go to a doctor's appointment.

    And all of that is dependent on how I slept, what I did a day or two before. It doesn't take into account unexpected bursts of energy that can lay me out for days.

    So even the your 1 and 2 doesn't work for me. This disease is too individualized and try to have everyone fit into one scale just doesn't work.
     
  9. Hip

    Hip Senior Member

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    Well you could read between the lines on that one, and equate prostrate sofa-bound to bedbound.
     
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  10. minkeygirl

    minkeygirl But I Look So Good.

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    @Hip, true but nothing else really works for me. Every day is different for me. I just don't like these scales. There just isn't one size fits all with this disease.
     
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  11. alex3619

    alex3619 Senior Member

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    What a scale does is measure a single dimension of the disorder. That does not take into account serious fluctuations, including crashes, either.

    I am capable of twelve hours of activity a day. Its not about the duration of activity, its about the kind of activity. Sitting on a computer, twelve hours. Cooking, two minutes at a time, up to ten times a day. Going shopping, almost never. Light cognitive tasks, eight hours a day maybe. Substantive cognitive tasks, often zero to a bit every now and again these days, depending on the activity. These are multidimensional factors, and do not fit into any linear scale.

    However, there may be aspects of the disease that are more linear and useful. We could probably capture those, such as exercise capacity using CPET, or brain dysfunction using a PET scan.
     
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  12. Valentijn

    Valentijn Activity Level: 3

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    Ideally, I think an ME/CFS scale needs to have at least 3 factors: OI threshold, PEM threshold, and cognitive function. Trying to blend two or three of those criteria into a single level just doesn't work when different patients tend to have differing magnitudes of problems in each area. I also wouldn't hesitate to use a half point (such as 3.5) when condition varies pretty consistently between a 3 and a 4.

    For example, I equate being bedridden largely with OI issues, whereas hours of physical activity are more a matter of PEM. And there's a huge cognitive component to being able to work. Hence I'm more like a 1.5 on the OI scale, a 3 on the PEM scale, and a 5 on a cognitive scale.

    And for practical purposes, such as communicating level of disability, it's generally going to be the lowest of the three values which is most pertinent. Having a cognitive function of 8 doesn't mean you can work 8 hours per day if you can't sit up.
     
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  13. Mij

    Mij Senior Member

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    Scales don't work for me either. I would have to answer each question with a long explanation, like yeah I can get out x2 times a week but only if I totally do nothing the week before and don't wash my hair, sure I can go walking but only after 6pm and only if I dont' cook or talk that day. oh and when I have a viral episode I'm lying down from 1 week, sometimes 5 months.
     
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  14. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    yes, those scales are wierd, all of them. I can be out of bed all day half the time, but I will doze off or zone out. Additionally I have to be in a type of seating which would never be offered at any workplace, ever.

    I can't even work from home from my own laptop, because I can't predict how much I can concentrate. Sure, I can do an hour or two of work--spread over three or four days. Some week. That doesn't mean I can do the same thing the week after that. Or that I won't get one day into it and then crash for three months.
     
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  15. maryb

    maryb iherb code TAK122

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    Can anyone précis the patent specifics for me (and others?)
     
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Good points. My cognitive and OI wasnt too bad but my PEM use to be quite severe. At one stage with work i was working 2 x 10hr shifts a week, i didnt have a choice of working shorter shifts and even with 2 shifts a week i was still having regular sick days. What i found was that when i wasnt at work i was mostly lying in bed(not sleeping, insomnia is a bitch), so after 5 days off i would have recovered enough to function for work and then the cycle would begin again. I think i was really in a constant state of pem, because when i would take a couple of weeks off for annual leave i would actually start to feel better by the end of the leave. I still think that those of us still managing to work, that PEM can be accumulative and fatigue builds until we can take a long enough break to recover back to our normal crappy selves??

    So it was really hard to rate my function. It was sort of like eating my entire weeks food in 2 days and then not eating for 5 days, or using my entire weeks energy in 2 days and running on empty for 5 days. I think if i was able to rest properly then i would have been able to improve quicker, with the right treatments. But i some how managed to improve to where im working 3-4 days a week and not suffering on days off too much.

    Some rate themselves in comparison to where they were pre cfs/me, if i did that i would still be less then 50% in function but actual suffering as in pain, headaches, brain fog etc are probably bigger improvements then my actual level of function, if that makes sense?

    So a simple rating out of 10 just doesnt take everything into consideration as well as the ups and downs that occurr regularly. After the initial infections that started cfs off for me, the early stages i could function at a reasonably high level where i would exercise and work full time and then be almost bedridden for 2 weeks. Its hard to try and average all this out into a number out of 10.

    For me i think i find it easier to look back at where i was say 6 months ago and then maybe a couple of years ago, it sort of helps even out the bumps to help us gauge where we are at now. I have a pre cfs period i can remember, a pre antiviral period and now my post antiviral period that i can make comparisons to. After dribbling all of this, i think all we can really do is compare us to our own self. i think one person saying they are at a 3 out of 10 can be very different to another being a 3 out of 10?? :confused::confused::confused:
     
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  17. alex3619

    alex3619 Senior Member

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    Athletes who get ME and lose 60% of their physical capacity may still be able to do more than most people. Its relative.

    I think that cognitive function actually needs to be broken down into subscales. Some areas of cognition I would rate highly, even though I have lost more than half of my original capacity, whereas for others ... well, zero capacity is a good description. Its like having holes in my cognition. Some things are just not there.
     
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  18. Valentijn

    Valentijn Activity Level: 3

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    I think the threshold for triggering symptoms is a lot more important than asking "what can you do". Obviously we can often do quite a bit more than we should, as evidenced by PEM following shortly thereafter. But "what can you do without triggering symptoms" looks quite a bit different, and gives a much more accurate representation of current limitations.
     
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  19. alex3619

    alex3619 Senior Member

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    Yes, if I go by that, then my functional capacity for the day is about 2 minutes of moderate activity, which I spend cooking. Where does that fit on the scale? Yet I spend far more than that, broken up into short bursts with rests in between. With careful management I maintain function. That is after all the purpose of pacing.
     
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  20. Valentijn

    Valentijn Activity Level: 3

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    And that really is a lot more useful than "can you work two hours per day". Hell no I can't! But I might be able to do two hours worth of activity throughout the day, if broken down into small chunks. Hence the more relevant question is "How many minutes of activity can you reliably handle per hour, without triggering an exacerbation of symptoms?"
     

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