Working with ME/CFS

[ruben]

Having got glandular fever in 1972, and didn't recover aged 17, I'm now retired. I live in UK. How are things these days for people like us, are they still told they must go to work, in light of the fact that a precise diagnosis isn't really there.

 

[Rufous McKinney]

First Bout: 1963, then again in 1965, again in 1968; again in 1977.

In 1977, the doctor told me to rest for two weeks on Prednisone.

 

[ruben]

This is completely alien to me in that I got ill with glandular fever in 1972 aged 17 and never returned to normal health. So you're saying are you in all that time span you had periods of completely normal health? I am currently trying to get some antivirals from "Alldaychemist".

 

[hapl808]

How are things these days for people like us, are they still told they must go to work, in light of the fact that a precise diagnosis isn't really there.

The USA is changing our rules on Medicaid. It used to be if you made below the poverty level, you'd automatically get Medicaid coverage, such as it is. However, they are changing that so if you don't have a disability diagnosis, you will be required to work 20 hours per week or lose all health coverage.

It's going to be a disaster for people with any chronic illness that is poorly understood. It's bad enough that it's so hard to get a disability stipend, but now you won't even be able to access any healthcare. Our emergency rooms will be overrun, and they'll blame patients.

I got sick in the late 90's and never recovered, but with career changes and constant pushing through, I was able to do 'some' work for almost 20 years. My first major crash after 40 years old was the beginning of the end for me.