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Clarity re activity levels for profile?

Discussion in 'General ME/CFS Discussion' started by MeSci, Nov 18, 2013.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I have had difficulty deciding what the different activity levels mean in profiles, and also of course categorising my own.

    'Hours of activity' is unclear. Does this mean physical activity? How physical?

    Clarification would be greatly appreciated!
     
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  2. justy

    justy Donate Advocate Demonstrate

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    For me 'pottering' is activity. But as I can potter about for large parts of the day that makes it sound like I am better than I am. Then there's the variability...
     
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  3. justy

    justy Donate Advocate Demonstrate

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    My profile says this under activity level

    5 - but only if i DONT leave house several times a week as the scale suggests
    But now I cant find the PR activity scale anywhere - do you know where it is?
     
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  4. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Do you mean the stuff which appears on your 'personal details' page in your profile under the 'activity level' box? That's all I have been able to find.

    I am active all day if activity means being out of bed and doing things! So is food preparation activity? Is feeding the cats activity? Is doing research sitting down activity? Is forcing my unwilling brain to do my accounts activity? (It certainly is exertion, but not physical.) Is talking on the phone activity? (Again, I find this strenuous.)
     
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  5. Beyond

    Beyond Juice Me Up, Scotty!!!

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    Hmm that´s why I chose 3-4, because I feel like when it says "activity" it means the activities of someone healthy i.e. working with something that requires physical and mental functionality, exercizing, travels, "going out with friends"... in essence what the people surrounding us considers "living"... :(. Hence, 10 is completely functional and able to have a very active life.
     
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  6. Sing

    Sing Senior Member

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    I forget the description of the activity levels, but responding anyway--I potter (putter around) a lot. Sit on my bed with my legs stretched out, to read or do ipad. I make myself stand up and prepare food somewhat, but I don't cook every meal. I use frozen dinners and prepared foods more liberally than most, I expect. Food prep is a slightly creative thing which I enjoy as creative, but the standing and doing all the parts of it, when cooking from scratch, is real work, so maybe I do this for one meal a day. I avoid talking on the phone or in person more than I used to because it is tiring and I don't do well, in terms of thinking and contributing. With writing I can take my time and pull things together better, but it lacks the emotional, spontaneous interaction. I go out once a day at least to walk around in town and have little chats, which aren't taxing, so I feel part of the community. Always like to run into people with dogs as they usually let me interact with their dog and that makes me feel good.

    The key thing is not only lowered activity in terms of events, it is slower brain waves. I have learned to function at a slower brain rate which is like the twilight zone before sleep. I am slightly in a trance. This is restful and very important to my ability to manage. Trying to do a fast brain or keep up with someone else talking and thinking quickly is extra tiring. If this goes too long for me, my brain can't follow the flow of information. First it skips and finally it flat lines. My speech gets increasingly affected to where I sound really dumb. I am not dumb, or wasn't, but what is the difference now between how I can be and "dumb"?
     
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  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Here are the descriptions of the levels copied from my 'personal details' page, with formatting to improve readability:

    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 say 6 but am potentially 7 if there were an employer that could accommodate my needs! I think that is the main barrier to work for many/most of us. It's not that we don't want to work, but that we need a lot of flexibility which most employers won't or can't provide.

    I hope we get an 'official' answer soon!
     
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  8. Kina

    Kina

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    @MeSci

    It looks the scale is from the following, except the percentages are now numbers from 1-10 on Phoenix Rising.


     
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  9. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Many thanks, Kina. I find this scale clearer. There are clear similarities with the PR scale, except that Bell does not specify numbers of hours of activity, which I find problematic for reasons given above.

    I notice that sometimes he refers to 'exertion' and sometimes 'physical activity', so perhaps he includes mental exertion in 'exertion'.

    I'm just concerned that the scale on PR may lead to people misclassifying themselves. I think that the scale is potentially very useful and would like to see it defined more clearly.
     
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  10. Kina

    Kina

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    @MeSci
    I agree with what you are saying. I think the problem with the scale is that on the profile area it's in abbreviated form due to space limitations. These things are extremely subjective to start with and for clarity things like what is meant by 'activty', 'rest', 'exertion', etc should be clarified (I don't know if it's further clarified elsewhere on the internet). For me, my number changes depending on many things day in and day out.

    If members want the scale clarified then somebody would need to do this. I guess we could add a page with the clarification somewhere and put a link in the form for members to access when they are filling out their profile. Any volunteers would be appreciated. I suppose we could hash it out on this thread to start with; a beginning at least.
     
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  11. justy

    justy Donate Advocate Demonstrate

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    Thanks Kina, reading the Bell scale in full means I better put my page back down to 40% again. Funny how I keep thinking I am improving until I look at the scales!
     
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  12. taniaaust1

    taniaaust1 Senior Member

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    That scale above isnt at all suitable for my case.

    Seeing I have collapses I cant leave my house alone due to the huge risk Im going to go down while out (which happens about 1/3 of the time to me when I do basic food shop if Im not being pushed in a wheelchair). So when the say "able leave the house once per week" do they mean without support workers going with you? (it takes 2 support workers to take me shopping cause of the issues. I just wouldnt be able to go out alone and would be permanently homebound without these).

    I can concentrate (if this means really thinking) for 2-3hrs per day some days more, in broken down time (it thou probably only about 30-60mins I can if intensely concentratining without a break eg to take in a study lecture, I can only do 30mins before my brain is mush (and that is with doing DVD lectures which I can go back and relisten to the parts which went too fast for my brain).

    I do more then 6-10hrs of activity per day depending on what people call "activity".. watching TV could be called an activity, being online is an activity. So I guess I could even put myself down with above scale as a 6

    Scales like these if someone was being investigated by social security, could get someone in a lot of trouble as they may be downplaying a lot areas they have issues in as they fit things as well which are at a number which is at other levels and it could be used against them. Sooner or later someone is going to be pulled over the coals due to ratings given which authorities have seen online which may of given a false impression.
    ....................................

    Thou I dont fit into bell scale perfectly, I like the fact with that one, one can use the "percentage levels" to work out where one fits better. Im at about 20% normal.. so between a 10-20 on the bell scale (thou if Ive been pacing within that kind of limit, I wont be then getting symptoms at rest as the scale suggests).
     
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  13. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Personally I would like the scale clarified in the appropriate place(s), maybe via a link. In the meantime I have pasted the relevant bit of the Bell scale in my profile so that people have a better idea of what my activity level is.

    I'm afraid I don't have the techie know-how to do anything website-wise.
     
  14. rosie26

    rosie26 Senior Member

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    I put myself at level 3-4. But I really fluctuate between level 2-4 which is more accurate I think.
    I can do odd days at a higher level but not wise as it throws me back down to lower levels fairly quickly by having overdone it.
     
  15. SickOfSickness

    SickOfSickness Senior Member

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    The PR scale is not detailed and open to interpretation.

    The Bell scale doesn't fit me well either. I am shocked at how 20, 30, and 40 are defined on the Bell scale because of that comparison he makes to pre-illness activity. 20 is basically bedridden and he says you could still do 30-50% of what you'd do if healthy? :confused:o_O I would think 10-15% or less.

    This scale is great, very detailed, but takes longer and more effort to decipher. http://www.hfme.org/themeabilityscale.htm
     
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  16. Sing

    Sing Senior Member

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    Thanks for adding this scale SOS. I would be a 50 or 50% overall; however, as noted by everyone, there is a range. Doctors like to put down one single number. Same with pain level. But these leave much to be desired. For instance, with the distractions I use during the day, I would say my pain level is lower, but when I toss and turn at night because of aching which I can't get away from, then what is my pain level? In effect, it is much greater. Also, pain that goes on and on, in my view, ought to be given a higher number than brief pain. I almost want to say when numbers are asked for, "I am not going to play that game and here is why...." Then, give it to them longhand.
     
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  17. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I have noticed one thing that may cause difficulty with that one: in the 30% category it says "May be unable to walk without support much beyond 100/200 metres; a walking stick or wheelchair may be used to travel longer distances."

    I use a walking stick most of the time in order to maximise the amount I can do, but I would certainly not consider myself to fit in that category otherwise. So I would very rarely attempt to walk any distance without my stick due to the wish to avoid exhaustion, PEM, etc.
     
  18. taniaaust1

    taniaaust1 Senior Member

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  19. mermaid

    mermaid Senior Member

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    Very useful discussion for this reason alone. When I was renewing my ESA 2 yrs ago I was very aware of this factor. I paid for a very supportive letter from Dr Myhill which was fantastic in as far as it went, but she also attached the Bell disability scale to send to them, and I just didn't feel it applied to me at all. In the end I omitted to send it to them. I was first placed in the Work Related Activity Group but after reconsideration was placed in the Support Group.

    The average person looking at me and my house-pottering and activity on the computer would think maybe I function highly, but no employer would want someone who takes more than twice the amount of time to do something, and can only function with typing on a computer rather than speaking as I can Google the things I forget. When i did work part time I had to even write down the name of the place I worked as I kept forgetting it. Writing on the computer I function highly, but it takes its toll of me too in subtle ways that creep up on me.

    Activity at home and work activity are 2 completely different things in my opinion - they do not take into account the stress factor being imposed on you by the employer (or yourself if self employed). This in itself can impact on your condition over time, and you will be forced to worsen your condition by working when not well, and thus it can further deteriorate.
     
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  20. SickOfSickness

    SickOfSickness Senior Member

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    The creator of the HFME scale has M.E. herself, and it was based on other existing scales. It is not perfect but it gives a much better picture.

    I feel we ought to. Very inaccurate for them to write down one number for pain. I had a doc who would also write down one number for fatigue. One number means almost nothing.

    If we argue it, most docs would roll their eyes and insist we pick one number :(

    I see only 2 ways to fight that. First is obvious - dropping the bad docs and keep going until you find a good one. You have to check that the good docs keep good records too, as some don't.

    Second is giving them a log, and most docs will add it to your chart. Make sure the log is easily deciphered - you have to state what 10 means, if you use a 1-10 scale. I highly recommend doing it for months or years if someone may review you for disability.

    There are many ways to do it. (On that HFME scale page she touches upon ways to log.) I would include a number for pain levels, and descriptive words if you can manage.
     
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