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The Mild, Moderate, Severe and Very Severe Levels of ME/CFS

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Hip, Jul 12, 2018.

  1. Hip

    Hip Senior Member

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    Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) can vary greatly in its severity: mild is the starting point, next comes moderate, then severe. And for extreme cases, there is the very severe category.

    These levels of severity are most easily understood in terms of what activities you are able to perform:


    The above descriptions of the mild, moderate, severe and very severe levels of ME/CFS are my own synthesis, derived the following sources which describe these severity levels:


    If we take the full ME/CFS scale:

    Very SevereSevereModerateMildRemission

    then any time an ME/CFS patient is able, as a result of treatment, to move up 1 level on this scale (eg, move from severe to moderate, or move from mild to remission), that can be classed a major improvement.



    It is interesting to try to map these mild, moderate, severe and very levels of ME/CFS onto the Karnofsky Scale, which is a general scale used to measure the severity of illness.

    In my own interpretation, on the Karnofsky Scale from 0 to 100, I would say that:
    Here is the Karnofsky Scale for ease of reference:
    Thus with the above interpretation, a 20 point increase and improvement on the Karnofsky Scale corresponds to moving up one level, eg, from severe to moderate ME/CFS, or from moderate to mild ME/CFS.



    To see other ME/CFS scales that I have attempted to map onto the mild, moderate, severe and very severe levels, click on these buttons:





    Further reading:
    Mild, Moderate, Severe and Very Severe PVFS / CFS / ME in Patients’ Own Words
     
    Last edited: Jul 13, 2018
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  2. Dechi

    Dechi Senior Member

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    I am moderate and I fit pretty much all those moderate descriptions.
     
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  3. Mary

    Mary Moderator

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    @Hip, thanks for doing this. However, I have trouble with the Karnofsky scale. I would be labeled 60 to 70 on its scale; I care for myself with no outside help. However, I could certainly use outside help. I have to save up energy to do things like grocery shopping, and then often spend a day in bed afterwards. My house is never really clean. I can do very little housework. So yes, I'm independent but I'm not at 60% or 70% of functioning by any means. A more accurate number would be maybe 25%. So I don't think the Karnofsky scale gives a true picture of ME/CFS functioning.

    On the Lerner scale I would be a 3.

    On David Bell's scale I would be a 30, but even that that doesn't work because it says functioning is 50%. Well, when I was well, I could easily do a brisk 1-hour walk before work, get ready for work, work 8 hours (desk job) plus walk more on my lunch, and then after work do more things. Today I couldn't manage one of those walks - it would leave me crashed the next day. My functioning isn't even close to 50%.

    It just seems difficult to quantify functioning for ME/CFS.
     
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  4. Hip

    Hip Senior Member

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    Yes, the Karnofsky scale doesn't work all that well when applied to ME/CFS (it is a general scale, not specifically designed for ME/CFS).

    I don't find the David Bell that easy to follow either. It refers to activity levels reduced by certain percentages, but I find that hard to relate to (ie, what exactly is a 50% reduction in activity?). The Martin Lerner scale is a bit more straightforward to understand.

    There are other ME/CFS scales also, such as Jodi Bassett's ME Ability and Severity Scale, which is the only one that has separate scales for physical ability and cognitive ability (but with my lack of cognitive ability, I find that confusing!). And there's the ME Disability Scale of Dr Charles Shepard.


    I find the simple mild, moderate, severe scale the easiest to relate to.
     
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  5. Vassie

    Vassie

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    Well done, Hip. It’s very clear and concise like this!
     
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  6. CreativeB

    CreativeB Senior Member

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    Thank you for doing this @Hip. I agree with @Vassie - very clear and concise.

    I'd identify myself as mild as I work but with a lot of flexibility and support; but as that is where my energy goes, my house is a mess and I need to buy new clothes regularly simply because I can't cope with laundry on my days off.
     
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  7. Moof

    Moof Senior Member

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    Thanks for this, this looks good. Trying to be too precise almost always presents more difficulty than broader categories plus a simple modifier if required (i.e., 'mostly moderate, occasionally severe' or 'moderate or moderate+').

    @Mary, I think it's best to classify yourself by what you need, not what you receive. I'm in the same boat – I could do with a lot more help than I get, but I also find it difficult to cope with actually having it. I used to have a couple clean my house and do a bit of gardening once a fortnight, but even though they were lovely people, it was so tiring that I usually dreaded them coming. Since they retired, I just keep swinging between whether it's easier to have the help, or easier not to!
     
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  8. Neunistiva

    Neunistiva Senior Member

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    I would be classified as very severe, but I am not well enough to go to the bathroom even once a day.

    Still, I feel like I am miles ahead from many others because I can eat on my own, and talk, and even use the internet occasionally .
     
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  9. Mary

    Mary Moderator

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    You are absolutely right - I was not thinking clearly! :sluggish:
     
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  10. medfeb

    medfeb Senior Member

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  11. medfeb

    medfeb Senior Member

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    @Hip - your descriptions of mild, moderate, severe, and very severe are great.

    A question on the descriptions - are people with severe ME always dependent on a wheelchair for mobility? I could imagine someone who is severe, pretty much homebound and largely laying flat all day - their mobility is limited to getting food and going to the bathroom in which case they may do that without a wheel chair.

    On the scales that you posted - after looking through these scales, do you have a preference for which one is the best in terms of sensitivity and range of severity covered?
     
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  12. Hip

    Hip Senior Member

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    Good point, I've changed the description slightly to make it clearer.



    Myself I prefer the severe, moderate, mild, remission scale, just because each level on this scale very clearly depicts the different illness severities and the corresponding "lifestyles" that ME/CFS patients usually fall into.

    These "lifestyles" are each quite distinct and recognizable: if you are a mild patient going out to work each day (but coming home exhausted), that's quite a different way of life to the moderate patient, who cannot work and is not able to leave the home much. And that in turn is quite different way of life to the severe patient who, is so frail that he or she is confined to bed for much of the day.

    So I find this scale easy to relate to: the levels are easy to understand, and most patients can readily identify where the lie on this scale.


    Perhaps after that, I find the Lerner Energy Index Point Score scale detailed above quite good, but not as easy to relate to.


    Whenever I read a patient's story on the ME/CFS forums of some treatment X that resulted in "great improvements" in their health, because such descriptions don't really mean much, I usually ask them to quantify their improvement on the severe, moderate, mild, remission scale. I ask them where they were on the scale before treatment, and where they moved up to as a result of the treatment. And most people are readily able to quantify their gains in health, once they see the severe, moderate, mild, remission scale.

    Sometimes a treatment might not quite move the patient up a 1 full level on this scale, and but it might perhaps move them for example from the bottom end of moderate to the top end of moderate. More rarely, you read accounts of treatments moving patients up 1, 2 and even 3 levels on this scale. Then you know that the treatment was pretty effective. Any treatment that can move you up even just 1 level on this scale will make a very noticeable difference, because it amounts to a complete change in illness "lifestyle".
     
    Last edited: Jul 13, 2018
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  13. Moof

    Moof Senior Member

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    I think this varies quite a bit – I've never had severe ME, but I've needed a powered wheelchair outdoors for 18 years. I worked full-time from developing ME in the 1970s until 2013; the wheelchair was a key part of enabling me to carry on for as long as I did, and it's really important in maintaining my independence and having a good quality of life now. I have to use a wheelie indoors sometimes as well, as I'm prone to falling because of low blood pressure.

    I know a couple of people who're similarly moderately affected who use them, too. What we seem to have in common is severe autonomic dysfunction (I used to pass out in shop queues after standing for just a couple of minutes!) and high levels of pain after minor activity. On the other hand, I had a colleague whose partner's ME was more severe than mine; she could only dream of being able to work, but she had better mobility because she never passed out or fell over. I guess it just depends on which symptoms predominate.
     
    Last edited by a moderator: Jul 14, 2018
  14. Seven (formerly lnester7)

    Seven (formerly lnester7) Seven

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    I always hate this becuase I have hold a job while mild, moderate, severe!!!
    I work computers so I can work remote. I can work from bed!!! Yet that is not a measurement. So it has driven me to say I am a 7 when I was really a 3.

    Now “mild” cFs here is the problem. My wall is the wall so let’s say I have commitment during the bad period. When I am crashed I am crashed. Live does not work on beautiful boxes where I can say everybody hold. Let me sleep for4h then I keep going.
    So when I am cfsy I have 0 energy for however long I have no energy.
    When I am ok to do some stuff then is ok.
    No people’s expectation of me is always to my highest energy point.
    So for me sometimes would’ve easier to have like a set energy available than variable ( I am more relapsing remitting type).
    I was a whole month like a normal person. Did not crash last month, walk on theme park, work to office full time...

    Then I was late on my period and got it.
    Crashed ( I think hormonal) and I am lucky to be able to show up at work. How do I explain that?!!!
     
  15. Hip

    Hip Senior Member

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    ME/CFS symptoms naturally will become worse during a period of post-exertional malaise (PEM), or crashes as these are sometimes called. But when assessing your level of ME/CFS, this is done when you are on an even keel, not when you are suffering from PEM and thus feeling much worse than normal.

    During a significant PEM period, patients might potentially go down a whole level on the very severe, severe, moderate, mild scale, in relation to their normal location on the scale.
     
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  16. Seven (formerly lnester7)

    Seven (formerly lnester7) Seven

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    I understand that. But my issue is my employment and the commitments.
    So I cannot get disability because I am not totally disable. But another employment will not want me becuase nobody hires a person that shows up whenever they want/can. family obligations are tricky becuase I feel ok, we plan around that and stopped paying a service to get my kid to school but then I am out, then what? Is as if I am this unaccaountable person that might or not might show up. But not crashed, I am ok one day, not the next. Today I am for example full blown IBS. I cannot get away from toilet ( as I type :)) and I am needed in meetings and crap at work :( so I mute te phone, participate then mute again!!!!
    It is a circus my live!!!!
     
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  17. CreativeB

    CreativeB Senior Member

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    Hi @lnester7, I can understand why you feel as you do. It's difficult trying to work with this. Sometimes we push ourselves too hard and make our condition worse. I think it's difficult to manage working with me/cfs.
     
  18. Seven (formerly lnester7)

    Seven (formerly lnester7) Seven

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    Ahhh I also forgot to say. Sometimes energy is independent of how bad I feel.
    So sometimes I have little energy but if I do not move I feel great and normal.
    Vs other days I can move but feel like I want to die of sick ( inflamed brain, tingling) muscle pain.... and weather I move or not I am misserably sick ( like today with the IBS). So that is another factor of well-being that is independent of level of energy / activity.
     
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  19. Runner5

    Runner5 Senior Member

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    I think it's a good scale because it will help people communicate about the illness and also for outsiders to (possibly) understand how serious and how completely life-shattering this can be to live through.

    @Inester7 -- ((hugs)) -- That's a difficult position you're in. You're tremendous.
     
  20. Learner1

    Learner1 Forum Support Assistant

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    I find all of these scales confusing. The descriptions don't fit me.

    My own description is that 2 years ago, I functioned at about 40% of normal and now I'm at about 80%, but with a lot of treatment to be at this level.

    If you were to force me to pick, I'd say I was between moderate and severe and now I'm between mild and moderate, or mild, or moderate depending on the descriptions in each scale. Its a head scratcher.:wide-eyed:

    But, I will say that the treatments I've done in the past 2 years have been gradually helping me improve. Before that, I spent a year and a half getting worse, going from none to moderate to severe.

    To track my progress, I think the markers are:
    1. Total hours of sleep in 24 hours
    2. Number/hours of naps per day
    3. Ability to sleep through the night with quality sleep
    4. Ability to read an article or focus on a TV program or a tedious task at work
    5. Ability to write a business letter for report or help a child with homework
    6. Ability to plan and execute a multi step task.
    7. Ability to stand in a grocery line or talking to someone without passing out
    8. Hours of work per week
    9. Hours of treatment per week
    10. Ability to walk and distance walking, or confined to a wheelchair
    11. Minutes of non-aerobic exercise per week
    12. Minutes of aerobic exercise per week
    13. Ability to exercise without multiple naps during the session
    14. Hours of PEM per week
    15. Ability to drive and do errands
    16. Ability to sit through a meal
    17. Hours of social activity with family
    18. Hours of social activity with others
    19. Ability to cook, do laundry, vacuum, take out trash, mow lawn, etc.
    20. Ability to take a vacation normally, without compromises
     
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