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I Remember Me - Chronic Fatigue Syndrome CFS 1 of 9

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Uploaded on Sep 21, 2010

Kim Snyder

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Uploader Comments (ncf1)

  • grumlethegoat

    I was running 5 days out of 7, or mountain biking up to 60 miles. Loved my life of good exercise, good food and even enjoyed my job. Now after over 2 years of this, I cannot run, can do a minimum bike ride maybe once a month but know that I'll pay for it later, I can only work part time, 4 or 5 hours.

    I think of the positives. I haven't lost a leg, I can still go to work, do the gardening, do the house work, although in minimum time, I'm still alive and have to make the most of what I have.

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  • ncf1

    thats what happens,you start focussing on the positives: every little positive in your life, and come to appreciate them so much more.You become more patient simply as a consequence of the restrictions placed on you,you start seeing things in a different perspective. Perhaps this is the stuff we are ultmately meant to learn, perhaps this illness is a way on fast-tracking us to learn a bunch on things in one lifetime, so in that sense it is extremely effective. And of course extremely painful.. !

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    in reply to grumlethegoat (Show the comment)
  • anacleto20

    I became ill 11 years ago, when I was 22 yo after a mononucleosis. I've been treated as a psychiatric patient. I'm still searching for a diagnosis, and I now think that I've this illness, ME/CFS. But here in Italy very few phisicians know this disease.

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    in playlist i remember me
  • ncf1

    You have my empthy. I got hit with the illness when I was 25.. just a struggled from there, its not easy. But it definitely teaches you many, many lessons along the way.. but overall it is not very easy and at times can be brutal so hang in there and just *stay positive*.

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Top Comments

  • Hecklerkoch223

    Ex-Military, ran five miles a day. Trained like my life depended on it, earned two college degrees. I started graduate school and became ill. Lost all of my money, fiancee and family wanted to check me into a mental institution. Your body becomes completely crippled from this illness..Doctors and family insist that I try anti-depressants. Why won't people believe me?

    · 12

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  • ncf1

    it's extraordinary isn't it? I was an over-achiever prior to illness - did about 10 times more than anyone else in my family, soon as illness struck I was a lazy, useless, lying layabout. Just a devastatingly cruel illness - but one I must say that really brings out people's true colours, and you see how shallow, disloyal and disbelieving a lot of people are.

    · 9

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All Comments (61)

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  • cfsboston1

    Chapter 33 of Hillary Johnson's: Osler's Web: Inside the Labyrinth of the CFS Epidemic is "HIV-NEGATIVE AIDS."

    Neenyah Ostrom's book "America's Biggest Cover-up: 50 More Things...CFS & Its Link To AIDS" cites: "Some CFS Patients May Be Non-HIV AIDS Cases."

    Will CFS ever make any progress unless we acknowledge this fact?

    Published 9 times on 4 continents, my life w/ NON HIV AIDS:

    w ww.ukprogressive.co.uk/the-aid­s-like-disease-seldom-mentione­d/article20891.htm l

    Or just google “NON HIV AIDS”

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    in playlist Severe ME--I remember ME
  • dopestarism

    yes, it sure isn't fun.. i've had it for about 14 years now. Doctors just do nut understand.. even after all this time they ask the same questions they did 14 years ago.. its like describing the colour green to a blind person, its just not possible. CFS sucks in so, so many different ways, it is so cruel. My hats off to each and every one of you who deals with this, you are a trooper, no question!

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    in reply to anacleto20 (Show the comment)
  • SignsAllAround

    I first got ill in 1992 27yo, after a trip to China. Bizarre symptoms; didnt know who what where why I or anything else was, had to reconstruct reality every morning; pain; seeing things; sudden disorientation while driving; etc. Finally saw an ND a year later, 60% better in ~4wks but never the same. Many challenges since, and successes (travelled, got an MA, probably worked too hard, etc). Bad case of mono(?) in 2004; slowly came back to able to work only but now ill again about to lose my job.

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    in playlist Chronic Fatigue Syndrome
  • gabrielselbow

    Same story for me. I studied all my life, got two Masters degrees and a BA, had a career as a health professional I had to give up, my family turned their backs on me, the UK welfare state doesn't care either and makes it as difficult as possible to get financial and medical help. I now sleep on a friend's floor, have few friends and it's all i can do to keep going. Outwardly I mainly look fine though. God bless all of you who go through the same kind of solitary hell.

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    in reply to ncf1 (Show the comment)
  • swsmissus

    check out some info on methylation issues, try b12 (NOT cyanocobalmine, but METHYLCOBALMINE)...worth a try :)

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    in reply to anacleto20 (Show the comment)
  • Rich Wendel

    How sad and archaic.Check out Kenny de Merlier in Brussels, Belgium.

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    in reply to anacleto20 (Show the comment)
  • Rich Wendel

    See what Robert Miller is doing right now. My CFS activism began in 1996 with red-eyes to Philly, NYC, The Beltway. Even the flow of Ampligen was threatened. Interviews, radio programs, meetings, petitions, talks, statements, shows, affidavits, calls. e-mails, letters x 1,000...

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    in reply to Natebubba (Show the comment)
  • Natebubba

    Overachievers... might overachieving result in you going outside and being bitten by a tick? Because you're exercising? We've got to stop saying oh this sucks and start looking for and demanding answers.

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