I always thought of blogs as being narcissistic, business related, or as my sister's, a way of keeping in touch or memorializing.

But, by necessity, I am learning a lot about myself. I find I need to get my thoughts out, and it helps me to know that someone else will read them. So I have created this little space for myself, to express the things I have trouble saying (be it emotional or physical trouble), to share what I'm going through, and what I'm learning through it.

I absolutely welcome comments. It's nice to know how people relate to what I'm saying.
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Monday, 1 August 2011

What's in a Name?


For the first time, I'm tying these in my blog. I don't want to hide what I have anymore. I'm comfortable enough with the labels, I've had nothing but support, my insurance has been approved, and I have realized there is nothing for me to fear in openness.

So why all the names? Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, ME/CFS, CF Immuno Deficiency Syndrome... all of these have at one point or another been used as labels for the illness from which I suffer. The international medical community has yet to agree on what to call it, what it is, how it should be treated, and under what category to put it. There are a ton of politics, and plenty of conspiracy theories out there that go into detail on this. I can't waste my limited brainpower trying to figure them all out, especially when, no matter what you call it, I still have it.

I was prompted to write this post and open up further particularly because of a ground-breaking document that was published mid-July. There is now an official, international document, put together by the best minds in CFS/ME related studies from around the world that solidifies the definition of ME.

Here's the thing - it actually makes no difference in my life, yet it seems like it should.

What I think it does do, and hope it will do, is validate the reality and severity of this illness for people who are not taken seriously, which is altogether too common. I hope it will make it clearer for us and our doctors which studies, undertaken with which definitions are actually applicable to each of us, and which cover people with something else.

It makes me awfully proud that the basis of the new International Criteria is the Canadian Consensus Criteria, and that there are a number of leading Canadian doctors involved.

And so, I'm still not really sure why, but the publishing of this document has somehow given me the confidence to say here, in this blog, in public, to all the world (or whatever small portion of the world reads this) that I have ME, and this is what it is.

1 comment:

  1. There is nothing so powerful as truth; and often nothing as strange.
    ~~~Daniel Webster~~~