Millions suffer from an invisible disease: My ME/CFS story - Ryan Prior

[Sly Saint]

"
Atlanta (CNN)Every morning, I shave, brush my teeth, and swallow a dozen pills. I look in the mirror and thank God I can even walk out the door. Since 2007, I've lived with an incurable disease known as chronic fatigue syndrome. Internationally, doctors call it myalgic encephalomyelitis, or ME/CFS. The tongue-twister means "painful inflammation of the brain and nervous system."

August 8 is "Severe ME Awareness Day," and you may be surprised how many people in your life are, like me, struggling in silence with an invisible burden. The Centers for Disease Control and Prevention estimates up to 2.5 million Americans are suffering from ME/CFS, with many cases undiagnosed.

I'm even more grateful for the life I have, knowing how this disease could have taken me down a darker road. So today, I lend my voice to those who suffer from one of the most debilitating diseases many people have never heard of."

https://edition.cnn.com/2018/08/08/health/iyw-ryan-me-cfs-story/index.html

 

[Trish]

Whenever I read of someone taking 20 medications prescribed by an ME doctor and being able to function well as a result, I wonder what they are and why they seem to work, and why there isn't research to demonstrate which of them if any are effective.

 

[Kalliope]

 

[Rick Sanchez]

Whenever I read of someone taking 20 medications prescribed by an ME doctor and being able to function well as a result, I wonder what they are and why they seem to work, and why there isn't research to demonstrate which of them if any are effective.

Ditto!

He seemed to have started the treatment one and a half year after getting ME/CFS. So might just have been pure chance that he went into remission ''shortly'' after a suden-onset. Since consensus among most ME/CFS experts still seems to be that there is little to no evidence of anything working at the moment.

Personally this is one of the most annoying things about the lack of funding for ME/CFS, we simply do not know if there are low hanging fruits that could make our lives better. Are these different recovery stories actually due to some treatment, or just due to the fluctuations of the illness?

Glad that Ryan has been able to get more focus on the illness and has been able to make somewhat of a recovery! He seems like a pretty incredible person. Wish him the best of luck!