The Neurological Alliance: Patient experience survey

One problem with reducing "quality of life" or "ability to carry out day to day activities" is it doesn't take into account within-disease variation. It says nothing of the degree of variation and overlap...
 
Snow Leopard said:
One problem with reducing "quality of life" or "ability to carry out day to day activities" is it doesn't take into account within-disease variation. It says nothing of the degree of variation and overlap...
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There's also the possibility that quality of life in ME/CFS is so low because a large impairment to do activities is part of most case definitions. Perhaps some patients have the same illness in a less severe form. But because of the severity requirement in case definitions, they would not be diagnosed with ME/CFS. In neurological illnesses that are based on biological marks, the diagnosis is made differently and there might be less of a selection based on severity.

I do remember a study by Jasons group which said that the severity criterium is redundant in case definitions with multiple symptoms and PEM as a requirement, but I can't find it at the moment.
 
I have what’s called mild ME I’ve had to retire from my job, having to sell my house to live somewhere more accessible, moving cities because travelling back and forth a 100 mile one hour each way trip makes a lot of my potential social activity out of reach, I cant manage a one basket supermarket shop without feeling wiped out. I can make it out of the house so I’m lucky in ME terms but literally everything I do is affected by ME all the time so yeah my quality of life is badly affected.
 
NelliePledge said:
I have what’s called mild ME I’ve had to retire from my job, having to sell my house to live somewhere more accessible, moving cities because travelling back and forth a 100 mile one hour each way trip makes a lot of my potential social activity out of reach, I cant manage a one basket supermarket shop without feeling wiped out. I can make it out of the house so I’m lucky in ME terms but literally everything I do is affected by ME all the time so yeah my quality of life is badly affected.
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That is not mild in any stretch of the imagination...
 
Snow Leopard said:
That is not mild in any stretch of the imagination...
Click to expand...
I agree but I can still do stuff live alone do all my activities of dailyliving for myself in ME terms it is mild/moderate borderline. But that’s just comparing with people with ME. We had a great thread a while back about severity and terminology. And I definitely vote for ditching mild.
 
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