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February 15, 2013

CFS Info Gathering

I've been trying to read what I can about Chronic Fatigue Syndrome online but when I google the words, I get a lot of Mayo Clinic and WebMD stuff. Unfortunately, those medical sites only post what can be substantiated by studies, so the nuance is missing. Also, they only use scientific language, so you might not be able to recognize your symptoms.

It wasn't until I googled one symptom "post-exertional malaise" for my last post that I found a series of articles on About.com by a woman with CFS and Fybromyalgia (they often go together, although I only have the one), which is well-written, easy to understand, and describes what I have in a way I recognize. Finally!

Here's the finale from her article "Understanding Chronic Fatigue Syndrome: A Simple Explanation."

Chronic fatigue syndrome can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.

  • It's NOT psychological "burn out" or depression.
  • It's NOT laziness.
  • It's NOT whining or malingering.
  • It IS the result of widespread dysfunction in the body and the brain that's hard to understand, difficult to treat, and, so far, impossible to cure.
Chronic fatigue syndrome is a serious, life-altering, frustrating, often misunderstood illness. What people with ME/CFS need most of all from those around them is emotional support and understanding.

Exactly. That's what I keep trying to tell the new folks at KSW (where I worked/work on the board). I think they get it, but it's really hard to be getting to know new people when I'm like this. I feel like I'm coming across as moody, whiny, difficult, flaky, etc.

I was always "difficult," but I used to be more energetic than everyone else, passionate, dedicated, able, profoundly competent. I used to be the one who picked up everyone else's slack.

It's possible now that no one new will ever see me this way again.

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You can also obtain excellent information from Phoenix Rising, Research 1st.com, and Co-Cure.org

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