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need to verify 50% = mild ME before I post this on FB

Discussion in 'Action Alerts and Advocacy' started by November Girl, May 17, 2012.

  1. November Girl

    November Girl Senior Member

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    I've often read the breakdown of CFS symptoms that states that a mild case is able to perform at 50% of the person's normal activity level prior to becoming ill. Before I mention this, I need to know where it comes from.

    I plan to do a series of posts for the rest of this month on FB, and ask my friends to share them. As long as I do them as a Note on my FB page, they're can be shared just by clicking on the Share box
     
  2. madietodd

    madietodd Senior Member

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    I think that's crazy. Where does that put people who function at 70 or 80%?
     
  3. November Girl

    November Girl Senior Member

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    not sure - but the full breakdown is something like (WELL this isn't accurate at all, but sort of like this)

    Mild - can perform (at least) 50% of prior activity level (maybe the at least belongs there - would make sense)
    Moderate ? mostly housebound
    Severe - housebound to bedbound
    very severe - bedbound
     
  4. George

    George waitin' fer rabbits

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    It depends on who's scale get's used. I think there are three major ones, Lerner, Lapp ?? and Bell's. Bells stuff is the best and easiest to use when talking to doctors and stuff. I'll see if I can dig up the links.
     
  5. George

    George waitin' fer rabbits

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    IACFSME primer http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf
    page 37
    This is From Dr. Bell on Pro Health
    I'll see if I can dig up Lerner's scale it's pretty good as I recall.
     
    Snow Leopard likes this.
  6. George

    George waitin' fer rabbits

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    Dr. Lerner's scale is here it's not great makes to big a leap between next to dead and able to work. (grins)

    Anybody know any other ones?
     
  7. Purple

    Purple Bundle of purpliness

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    This looks similar to the definition of severity from the latest International Consensus Criteria (ICC ME). Hopefully someone else can confirm this.

    It you think about it, the 50% decrease in activity due to illness to be considered mild roughly corresponds with Dr Lerner's scale above. If an average person decreases their activities by 50%, they would just about struggle with a simple job at the expense of everything else, in practical terms.
     
  8. Gavman

    Gavman Senior Member

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    What the hell, if 5 is just before recovery thats way not me. Lol. I can do things but 40 hours a week? Stuff that.
     
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    None of the scales seem to really have a category that fits every patient. I know I don't fit into any of the above.

    Sushi
     
    L'engle likes this.
  10. pine108kell

    pine108kell Senior Member

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    These kinds of scales are not really useful for me. For example there is a huge difference for me in "lying" and "sitting down" because of orthostatic issues. "Light activity" sitting upright is very different that "light activity" in recliner.

    Also, for those of us with more severe mental fatigue "reading" or even talking can be more strenuous than "light cleaning". Then there is the issue that some of us can be a "0" one day or week or month and a "3" or "4" another day or week or month. I could go on.
     
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  11. SOC

    SOC Senior Member

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    The problem with any fatigue/activity scale in this illness is that the illness is so much more than that. They don't really consider the pain, the OI, or the flu-like crappy feeling. The balance of mental fatigue and physical fatigue is different for everyone, so no scale seems to fit there, either.
     
  12. taniaaust1

    taniaaust1

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    I'd think this 50% would come from The diagnostic criteria of Holmes et all (1988). This would be based on ME patients as that is what Holmes was seeing (ME outbreaks), thou he called the diagnostic criteria for CFS (not long after the CDC did what they did as far as lake tahoe ME outbreak went).

    To be able to even get a diagnoses of CFS using the Holmes diagnostic criteria.. part of the major criteria states "1/ New onset fatigue lasting longer then 6mths with a 50% reduction in activity."

    so that is the starting level for this ME/CFS diagnostic criteria so hence 50% or a bit less iis seen as a mild case. (I think there is also other CFS diagnostic criteria in which one has to be at least 50% disabled as well.. cant right now think which ones it is but if I think of the other ME/CFS definitions which use the 50% to be able to get a diagnosis.. I'll post again.

    I truely wish the criteria which the original ME experts had put out had not been over shadowed by the CDC defintions. All this shows just how much CDC watered things down.

    Compared to how I was before I got ill.. Im at less then 20% of my previous capicity.. before sick.. I was physically active on my feet 10 hours per day.. now I can only do 1-2 hrs per day most (in tiny broken down lots).... (but that dont fit how they often do those scales.. most of the 20% scales have a person like bedridden).
     
  13. ukxmrv

    ukxmrv Senior Member

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    The 1988 Holmes criteria was not accepted by we ME patients at the time and some ME literate doctors walked away in protest.

    Just wanted to make that clear in case anyone gets the wrong impression.

    My request for November girl would be please make clear if you go ahead if something is a CFS or a ME quote. For example your heading says ME but your posting says CFS. Try to make that clear if you do go head and post something to FB

    - and thanks for considering this effort!
     
    taniaaust1 likes this.
  14. November Girl

    November Girl Senior Member

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    Found it! It's in the notes at the end of page 2 of the 2011 ICC.

    Operational Notes: For a diagnosis of ME, symptom severity must result in a significant reduction of a
    patient’s premorbid activity level. Mild (an approximate 50% reduction in pre-illness activity level),
    moderate (mostly housebound), severe (mostly bedridden), or very severe (totally bedridden and need
    help with basic functions). There may be marked fluctuation of symptom severity and hierarchy from
    day to day or hour to hour. Consider activity, context and interactive effects. Recovery time: e.g. Regardless of a patient’s recovery time from reading for ½ hour, it will take much longer to recover
    from grocery shopping for ½ hour and even longer if repeated the next day – if able. Those who rest
    before an activity or have adjusted their activity level to their limited energy may have shorter
    recovery periods than those who do not pace their activities adequately. Impact: e.g. An outstanding
    athlete could have a 50% reduction in his/her pre-illness activity level and is still more active than a
    sedentary person.​

    ukx - I'm switching over to using ME, but sometimes the CFS slips in. By way of explanation, I was initially diagnosed over 20 years ago as having CFS, but have more than met the criteria for every definition of ME or CFS I've read. When writing outside the ME/CFS community, I usually use the term ME/CFS because most people in the US have never even heard of ME. If I speak of ME, they hear MS, so I usually say Myalgic Encephalomyelitis, which opens a dialog. I realize that the CDC's coming up with Chronic Fatigue Syndrome was an act of intellectual laziness that has had devastating consequences. But for decades, many of us considered our disease to be named CFS. We may have detested the term, but that's all we had.
     
    ukxmrv likes this.
  15. taniaaust1

    taniaaust1

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    thanks for sharing that.. I didnt know that.
     
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  16. November Girl

    November Girl Senior Member

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  17. justy

    justy Senior Member

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    None of the scales seems that accurate to me. I agree that a 50% reduction doesnt appear to me to be mild. Of course you would need to qualify what you mean by a reduction of 50% and 'mild'. I quite like the Bell scale that Dr Myhill uses

    100: No symptoms with exercise. Normal overall activity. Able to work or do house/home work full time with no difficulty.
    90: No symptoms at rest. Mild symptoms with physical activity. Normal overall activity level. Able to work full time without difficulty.
    80: Mild symptoms at rest. Symptoms worsened by exertion. Minimal activity restriction needed for activities requiring exertion only. Able to work full time with difficulty in jobs requiring exertion.
    70: Mild symptoms at rest. Some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work/do housework full time with difficulty. Needs to rest in day.
    60: Mild to moderate symptoms at rest. Daily activity limitation clearly noted. Overall functioning 70% to 90%. Unable to work full time in jobs requiring physical labour (including just standing), but able to work full time in light activity (sitting) if hours are flexible.
    50: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or deskwork 4 - 5 hours a day, but requires rest periods. Has to rest/sleep 1-2 hours daily.
    40: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity. Overall activity level reduced to 50-70% of expected. Able to go out once or twice a week. Unable to perform strenuous duties. Able to work sitting down at home 3-4 hours a day, but requires rest periods.
    30: Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform deskwork 2-3 hours a day, but requires rest periods.
    20: Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity 30-50% of expected. Unable to leave house except rarely. Confined to bed most of day. Unable to concentrate for more than 1 hour a day.
    10: Severe symptoms at rest. Bed ridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration.
    0: Severe symptoms on a continuous basis. Bed ridden constantly, unable to care for self.

    http://drmyhill.co.uk/wiki/CFS_Ability_Scale_-_a_rough_measure_of_how_disabled_you_are

    On this scale i started at 20% when i relapsed 4 years ago and how now recovered to 40% (most days) I still have the ability to have days at 30% and others at maybe 60%.

    These scales dont reflect the fluctuation of the illness. I worry that using the 50% level as discussed above will lead to those with mild M.E being dismissed, or those who recover above this level being told they are well when they are clearly not.
    All the best. Justy.
     
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  18. garcia

    garcia Aristocrat Extraordinaire

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    I would kill to have a mere 50% reduction in activity. You could live a pretty normal life with 50% of the energy of a healthy person. I would definitely consider 50% and above mild.
     
  19. justy

    justy Senior Member

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    How do we know what a healthy persons energy levels are like. What does 50% correlate to? The problem is that if you come down with M.E and you are an elite athlete you may well be able to function at a higher level than someone who was sedentary when they became ill. It is relative and subjective - that is the problem with the scales.
    Having siad i like the above Bell scale i now see that when i am housebound at 40% i am still described as having 50-70% of the energy of a healthy person. But on the other hand you could have a mild case andbe at 80% but still have M.E and be symptomatic.
     
  20. Sparrow

    Sparrow Senior Member

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    I run into problems with the Bell scale where it gets to "Overall activity 30-50% of expected." at a 20/100. The rest of that level sounds much like me, but no way am I doing 30-50% of what I normally would. How could I, if I can't leave the house, am bed bound all day, and only get about an hour of mental activity? That sentence has always confused me.
     

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