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Re: “Despite the number of Americans living with ME/CFS, little is known about the debilitating illness

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ME/CFS was first investigated by the Centers for Disease Control in the 1980s, when 160 residents of Lake Tahoe, Nev.s North Shore came down with a chronic flu-like illness.




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Davis, the geneticist, was part of the IOM panel that examined 9,000 publications about ME/CFS over the course of more than a year.




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Davis has also been reaching out to patients who have recovered from ME/CFS. Hes asked them to send him emails about what they think they did that got them over it. But he says he received as many possible treatments as the number of emails, because patients can provide only correlational data: They usually think about the last thing they did before they recovered, but in reality the cure could be something they did two months earlier that helped them start moving in the right direction.






You would think people have done something that makes them get better. Its just possible that theyre not aware of it, Davis says. They think of it as some supplement they took, but its totally possible that theyre just not aware of what they did.

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This strategy Julie Rehmeyer is using is based on the very first clue that started "The Chronic Fatigue Syndrome" -Erik Johnson

http://www.washingtonpost.com/national/health-science/what-is-chronic-fatigue-syndrome-and-why-arent-we-doing-more-to-treat-the-illness/2014/10/06/4cfff312-d458-11e3-8a78-8fe50322a72c_story.html?commentID=washingtonpost.com%2FECHO%2Fitem%2F1412690684-331-594







These disputes are heartbreaking when the needs of CFS patients are so great. Even the high-quality treatment I got from Klimas helped me only slightly. A year after I saw her, I heard from some patients who had significantly recovered from CFS through assiduously avoiding exposure to mold and other environmental contaminants. Although I considered the theory wacky, I was desperate enough to experiment. And for me, it worked. Two years later, I can go running, write articles and travel with my new husband. Every time I do, it feels like a miracle

Posted by Erik Johnson on 12/02/2016 at 3:06 PM

Re: “Despite the number of Americans living with ME/CFS, little is known about the debilitating illness

I am an Incline Village survivor and original prototype for CFS,
and I can tell you about it.

Eventually I anticipate someone is going to finally ask about the "160 at Lake Tahoe" and come back to ask questions
https://cfsuntied.net/2015/08/24/what-is-cfs-holy-grail/

Posted by Erik Johnson on 12/02/2016 at 10:59 AM

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