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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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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. SickOfSickness

    SickOfSickness Senior Member

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    IMO 50% reduction is very different to 50% of the energy. The average person would be hating their life if you took away 50% of what they do (and replace those hours with lying in bed). That they could only work half the hours (so their income is halved) and spend only half the time going out, half the time with family, etc. However IMO you could take many average people and cut their energy in half, and they could still do most of what they normally do, because I think people usually have excess energy and don't use it. They could be out running 10 miles a day (once they worked up to it) but instead they sit at their computer or TV or in a restaurant. So half their energy, and now they can only do 2 miles a day without pushing themselves... they can easily still go out shopping, drive to see friends, work at a desk 40 hours a week. I have dreamt of having 50% of a healthy person's energy.

    That's confusing. I wonder if expected means the minimum a person could do and support themselves? The amount you would expect every person could do? That seems more like it. And it's 30-50% of expected so not keeping up.
     
  2. Purple

    Purple Bundle of purpliness

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    My understanding is that the OP of this thread wanted to clarify the figures/description of severity for the purpose of advocacy, to show how debilitating an illness this is, to non-sufferers. Even though the scales discussed above are not perfect and will not necessarilly work for everyone all the time, it gives non-sufferers an idea of the devastating nature of this disease.

    This is IMHO the mesage needs to be conveyed to the general public - and how horrible the symptoms are on top of the necessary reduction in activities. And how sick the sickest are (while conveying the message that even the mildest forms are devastating and chronic). A lot of diseases are known by how sick the sickest are - ME/CFS is not.
     
    SOC and L'engle like this.
  3. November Girl

    November Girl Senior Member

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    Thanks, Purple. That's exactly my purpose.

    I think the "Mild" category includes up to a 50% reduction in activity. It doesn't imply that you don't have ME without it - just that you're still in the mild category.
     

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