A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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ME/CFS DISABILITY RATING SCALE and MEA website question for May

Discussion in 'General ME/CFS Discussion' started by charles shepherd, May 13, 2016.

  1. charles shepherd

    charles shepherd Senior Member

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    ME/CFS DISABILITY RATING SCALE: MEA WEBSITE QUESTION FOR MAY

    To link in with ME Awareness Week initiatives we have updated the MEA Disability Rating Scale

    Using this scale, we are asking people with ME/CFS to say which description is closest to their current level of disability

    ME/CFS is clearly a condition that fluctuates in severity and most people will find that their level of disability fluctuates over several descriptors

    The tools that we have for the MEA website monthly survey do not allow for a more complicated question and answers - which is why we are asking for the description that best applies to your current situation today/this week

    The MEA Disability Rating Scale has been designed to help people with DWP benefit applications and any other situation where the level of disability needs to be described

    You can vote via the home page on the MEA website:
    www.meassociation.org.uk

    Current voting:

    • How disabled are you at present on the MEA Disability Rating Scale? The scale is in 'Quick Links' immediately to the right of this question
      • 100% (3%, 2 Votes)

      • 90% (0%, 0 Votes)

      • 80% (18%, 12 Votes)

      • 70% (18%, 12 Votes)

      • 60% (21%, 14 Votes)

      • 50% (12%, 8 Votes)

      • 40% (12%, 8 Votes)

      • 30% (10%, 7 Votes)

      • 20% (1%, 1 Votes)

      • 10% (1%, 1 Votes)

      • 0% (3%, 2 Votes)


        Total Voters: 67





    MEA Disability Rating Scale:
    http://www.meassociation.org.uk/2016/05/the-mea-disability-rating-scale-2016/

    The MEA Disability Rating Scale, 2016
    A disability assessment scale can be useful for following progress and providing information for benefit, employment and insurance assessments. We’re posting this to help participants in our latest Quick Survey take part in the poll.

    VERY SEVERE
    100% DISABLED: Severe symptoms – often on a continual basis. Cognitive function (i.e. short-term memory, concentration, attention span) is likely to be very poor. Bedridden and incapable of living independently. Requires a great deal of supervision and practical support – including disability aids such as a hoist or a stair lift – with all aspects of personal care (i.e. feeding, dressing, washing) on a 24-hour basis.
    90% DISABLED: Severe symptoms, often including marked cognitive dysfunction, for much or all of the time. Bedridden and housebound for much or all of the time. Has considerable difficulties with all aspects of personal care. Unable to plan or prepare meals. Requires practical support and supervision on a 24-hour basis.SEVERE
    80% DISABLED: Moderate to severe symptoms for most or all of the time. Only able to carry out a very limited range of physical activities relating to personal care without help. Requires help with meal planning and preparation. Frequently unable to leave the house and may be confined to a wheelchair when up, or spends much of the day in bed. Unable to concentrate for more than short periods of time. Usually requires daytime and night-time supervision.
    70% DISABLED: Moderate to severe symptoms for most or all of the time. Confined to the house for much or all of the time. Normally requires help with various aspects of personal care and meal planning and preparation, possibly on a 24-hour basis. Very limited mobility. May require wheelchair assistance.MODERATE
    60% DISABLED: Moderate symptoms for much or all of the time. Significant symptom exacerbation follows mental or physical exertion. Not usually confined to the house but has significant restrictions on mobility when outside and may require wheelchair assistance. Likely to require help with aspects of personal care and meal preparation – but not necessarily on a full-time basis. Requires regular rest periods during the day. Unable to resume any meaningful regular employment or education.
    50% DISABLED: Moderate symptoms for much or all of the time. Symptom exacerbation follows mental or physical exertion. Not usually confined to the house but mobility restricted to walking up to a few hundred yards at best. May require help with some aspects of personal care. May require help with meal planning and preparation. Requires regular rest periods during the day. Able to carry out light activities (i.e. housework, desk work) linked to normal daily living for short periods but not able to resume regular employment or education.
    40% DISABLED: Moderate symptoms for some or much of the time. Normally able to carry out most activities linked to personal care and normal daily living, but may require assistance with meal preparation. May be able to cope with some work-related tasks for short periods – provided they are not mentally or physically strenuous – but not able to resume regular work or education.MODERATE TO MILD
    30% DISABLED: Fluctuating level of mild to moderate symptoms. Normally able to carry out all aspects of personal care and to plan and prepare meals. Able to walk short distances on a regular basis. May be able to return to work on a flexible or part-time basis – provided adjustments are made to cope with physical activity or cognitive problems. May have to stop leisure or social pursuits to resume work or education.
    20% DISABLED: Normally only mild symptoms at rest but exacerbation will follow activity. Able to carry out all aspects of personal care and to plan and prepare meals. Able to walk short to medium distances (i.e. up to half a mile) on a regular basis. Normally able to return to flexible or part-time work or education.
    10% DISABLED: Generally well with only occasional mild symptoms. No problems with personal care or daily living. Mobility and cognitive functions may still be restricted but almost back to previous levels. May be able to return to full-time work or education.
    0% DISABLED: Fit and well for at least the past three months. No symptoms at rest or after exertion. Capable of full-time work or education.




    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
  2. Old Bones

    Old Bones Senior Member

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    Under "current voting" above in @charles shepherd 's post, one category is bolded, which usually means I've already voted. If so, it would have been based on a scale where lower percentages indicated more disabled, and higher percentages more functional.

    I accessed the website, but was given no opportunity to vote, or change my vote. I like the new descriptions, but there's no way I would choose the 30% category, although this is where I have slotted myself on reversed scales. Has anyone else experienced something similar, or am I not looking in the correct place to vote?
     
  3. charles shepherd

    charles shepherd Senior Member

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    Yes - if a descriptor in the website poll is in heavy type this means that the website tool has recorded a vote

    Sorry - nothing can be done to change the results but your point is noted

    CS
     
  4. AndyPR

    AndyPR RIP PR :'(

    The 30% category in the original post here is in bold for me as well and I definitely haven't voted (yet) - this is what I see on the ME Associations website front page, hope it helps at least highlight where the survey should be for you.

    Screen Shot 2016-05-13 at 14.15.25.png
     
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  5. Comet

    Comet I'm Not Imaginary

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    Same for me. I see the 30% option bolded (which I would have never chosen) in @charles shepherd's post above. But no option to vote when I click the like and to the page for the disability scale.
     
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  6. Old Bones

    Old Bones Senior Member

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    @AndyPR Thanks, your post helped me to find the survey screen, and I was able to vote.
     
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  7. Comet

    Comet I'm Not Imaginary

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    Thank you. I just found it too and was able to vote. I was able to vote from this page.
     
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  8. TiredSam

    TiredSam The wise nematode hibernates

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    I find the scale easier to use than the Bell Activity scale, and there is a description of my level on this scale that fits me quite well.
     
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  9. Dolphin

    Dolphin Senior Member

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    The 30% in bold is presumably the rating from Charles Shepherd. He then copied and pasted the results as seen by him.
     
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  10. Sushi

    Sushi Senior Member Albuquerque

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    Thanks @charles shepherd. This is the best scale I've seen and, like TiredSam, has a category that fits me.
     
  11. TigerLilea

    TigerLilea Senior Member

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    I consider myself to be more disabled than 30% but according to this scale that is where I am at.
     
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  12. Old Bones

    Old Bones Senior Member

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    @TigerLilea I agree -- my post-ME function, compared with how much I was able to do when healthy, has always been less than the percentage assigned to the description on a rating scale, no matter which one I use.
     
  13. lnester7

    lnester7 Seven

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    I used to rate myself 70% until I had to catch a ride with a 73 and 75 year old friends going to the beach. I was raised to help elders and I carried one bag and they kept loading the car (While I was dead tired in the back of the car). They drove 10h (a dream for me) and by the time they drop me off (2h into their trip) I was shaking of exhaustion. That was the day I realized that even on a GREAT day we are VEEEEEERRRYYYYY DISABLE.
     
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  14. Webdog

    Webdog Nothing left to say

    I've experienced from 10% to 70% since illness onset.

    Today 50%. A year ago was 60%.

    In my dreams, I see 30%. In my nightmares, I see 70%.
     
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