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sheknows article: Chronic fatigue syndrome is so much more than exhaustion

When I told friends earlier this month that I’d planned a trip to go visit my friend who is sick, I started to see it as a way to spread awareness about his disease. The usual response to “I’m going to an old friend’s house who’s severely ill” is some form of the hopeful “Give them my best.” I took it a step further and said with purpose, “I can’t, really. I won’t be able to see him.”

Their response was always, “But I thought you said he only had chronic fatigue syndrome?”

Stephanie Land spreading the word again - rest of the article at http://www.sheknows.com/health-and-wellness/articles/1119407/chronic-fatigue-syndrome

Roy S

former DC ME/CFS lobbyist
Illinois, USA
Stephanie Land is impressive.
"it often lasts a lifetime"
That is excellent. It is the first time I've seen that stated in any article. In my opinion that is one of the single most important things that needs to be widely known. Most statements are words to the effect that it may last for years; as if that's only in rare cases.
"A brilliant physician I knew was one of the top public health officials on the AIDS crisis at its height," says Justin Reilly, who has both Lyme disease and ME. "He said to me: ‘The CDC did the same thing to the AIDS patients as they are doing to you: They put their absolute worst people on it and ignored it as long as possible. But then people started dying grisly deaths in big numbers, and it wasn't feasible to ignore it anymore. Unfortunately for you, your death will not be as grisly or swift.’"

Nice quote, Justin @justinreilly

That's another thing I haven't ever seen before about putting their worst people on it. For over 25 years I've just been saying that they're... not putting their best people on it. I hope that's starting to change now.