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From Winter 2015-2016 Forum

  1. To you, even the slow zombies look pretty energetic.
  2. Now, you’re frequently sick even in your dreams.
  3. You often go to a room for something and find yourself asking, “Why am I here?” — and the question is not existential.
  4. With some new doctors, you wonder who is getting less respect — you or the corner wastebasket.
  5. You’ve found that places you looked to for help, like CDC and NIH, are either laughingly incompetent or that the government is deliberately concealing something.
  6. You’d happily consider trading for Parkinson’s disease, multiple sclerosis, or being HIV positive.
  7. Your income is a fraction of what it would have been — but, you’re grateful that that’s not even worse.
  8. You used to think that you knew what the meaning of “pain” was.
  9. After CEBV, CFS, and SEID, you wonder what the next silly name will be.
  10. People have told you they knew someone like you who was cured by crystal channeling, Reiki, the Neanderthal diet, Polynesian light therapy, etc., etc. (and that they’ve been Feeling a little tired, too).
  11. During the disease onset, you kept telling yourself that you were just working too hard, fighting off a flu, getting older, developing allergies, [fill in your own rationalization].
  12. You have lab abnormalities and no depression, but you’ve, at times, been treated like someone with no lab abnormalities who has depression.
  13. You used to regularly run several miles, but now making it to your mailbox and back can be a challenge.
  14. When people say you look or sound great, you often feel like you’re about to keel over any second.
  15. You realize that CDC really stands for “Center for Denying CFIDS/ME.”
  16. People with your illness who have had a heart attack, stroke, or advanced cancer tell you that the illness you share is even worse.
  17. You become familiar with terms like “neurally mediated hypotension”, “hypercoagulability”, and “ciguatoxin”.
  18. You’ve often wondered how you can be this sick for so long and still be alive.
  19. You’re simultaneously worried about losing your disability income (because they say you’re healthy) and having to move to a nursing home (because you’re actually so sick and disabled).
  20. You wish they’d just go ahead and call it “WTF disease” (for “Worse Than Flu”, of course…)

*PWC — Person With CFIDS/ME (sometimes also written PWC/ME”)

The above was written by “APWC” from New Mexico.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606