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Re: The *Hummingbirds' Foundation: XMRV, 'CFS' and M.E. by She

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I def fall under " ME, " but no one in the US uses this term, so I am stuck with

CFS. When I use ME, no one has a clue. With CFS, they have a clue, but they

are usually wrong. I can't win. No, CFS is not ME, but at the same time, those

of us who are not going to be diagnosed with ME because the term isn't used- it

doesn't mean we don't have ME. It just means that being categorized as CFS

trivializes a serious neuro disease and does lump us in with the people I've met

who definitely do not have ME, but CFS, but think we have the same thing.

It is so extremely frustrating. Even my specialist, who I adore, doesn't use

the term ME, though God knows, I have or at one time had all of the 67 symptoms

all at once. Now I still have many or most of them, but I've progressed in

some, in some they have kind of not resolved, but I have adjusted. I always

take issue with the " ebb and flow " theory. I do not really do that. I have

" better " days, but I do not have periods of time where I'm a lot better. This

does not come and go for me. At all times, I'm struggling with the cognitive

stuff. Even on my " better " days. Every year of the 25+ years I've had this,

I've had months and months where I've had chronic nausea and vomiting. If I

went and wrote out every damn symptom I have, I'd be writing for a long time.

And then a stupid therapist I saw briefly asked me to list all my symptoms, as I

did she said, " You are so much calmer and centered when you describe them. "

(Yes, because it's rote already- I don't need to thin

k.) Then she started in on the, " You don't need to be sick to quit your job. "

That was it for us.

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