Jennifer Brea’s reaction to The Independent’s excellent piece on ME/CFS shows what it’s like fighting in the trenches for ME awareness

https://goo.gl/eLq4cc

ME/CFS is an extremely debilitating condition as well as an incredibly common one. It is also usually lifelong (hitting early, but rarely lethal), leaving many unable to work for decades. Acknowledging our existence would be unbelievably expensive.
I’ve heard many patients argue that these facts are at the heart of why this condition and the people living with it have been so mistreated. But observing a set of facts isn’t the same thing as proving intent.
The ignorance may not be willful, merely convenient.
My most generous interpretation: everyone is the good guy in their own story and the motivation to remain the good guy can bend and distort all logic, data, reason and even empathy under its need. Less generous: it is *both* willful and highly convenient.
First, there is the argument that disability benefits can make patients worse by fostering a “culture of dependency.” Under a veneer of science, denying disabled people with ME the benefits that could prevent poverty, homelessness, death is not only cheap, it’s doctor-recommended.


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