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

[SickOfSickness]

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.

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.

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.

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.

 

[Purple]

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.

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.

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.

 

[November Girl]

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.