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Tethered to my bed, I’m still fighting the stigma around misnamed ‘chronic fatigue’


ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

This has been posted in some threads relating to millions missing, but I thought it deserved its own thread.
Great article.

There are only two comments on it right now and one of those is ...er...strange.

ETA oops. I think there are actually more comments and they were hidden by a "show more" button. blaming the brain fog ;)

Get commenting people!


Tethered to my bed, I’m still fighting the stigma around misnamed ‘chronic fatigue’


MAY 24, 2016

It started with a bout of mononucleosis. Two college roommates and I got it at the same time. They felt better after a month. I didn’t. Decades later, I’m still living with bone-penetrating exhaustion and brain fog as thick as pea soup. I spent much of my 30s and 40s tethered to my bed, too weak to function. I’ve had to abandon both my career in international relations and my social life.

My mono had morphed into something more permanent, a neuroimmune disease the World Health Organization calls myalgic encephalomyelitis (ME). It affects between 1 million and 2.5 million Americans and 17 million people worldwide.

It’s a disease that can force you to put your life on hold. According to theInstitute of Medicine, it can reduce an individual’s ability to function more than heart failure, multiple sclerosis, or end-stage kidney disease. There’s no generally accepted diagnosis for ME. It can take up to five years to be accurately diagnosed, and up to 90 percent of people with it are never accurately diagnosed. Worse still, the FDA hasn’t given the green light to any treatments for it.
read the rest here:
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