Discussion in 'General ME/CFS News' started by Nielk, May 23, 2014.
Interesting. Oprah was not open to hearing anything about this disease during the 25 years that she did her show on network TV. I wonder what caused the shift in thinking?
There was a lengthy article in "O" Magazine several years ago ... maybe 2005...?
Here's my problem with the quotes text in the link. IMO it is still minimizing just how devastating this disease is.
I wish I was only tired for one day after a brisk walk. IF I could take a brief walk. I'm laid out after taking a shower or some days reaching for the remote.
To say you're still tired after a full night sleep is an understatement of epic proportions. The exhaustion I feel when I wake is crippling. I'm not just tired, I can barely breath, open my eyes or get to the bathroom.
And finding a specialist who understands. Should we just open the phone book? Who pays for this because My insurance sure won't.
I find that a simplistic view of things from someone who has. I clue.
PR is used as a source for some of those links... I'm not sure how good the prognosis page is either, as it looks like they were written some time ago.
wow, that's a start, though. Amazing.
Let's write and thank her and give her a small amount of more information that we like.
I personally think it probably is due to the following " It's such an enigma that the Institute of Medicine is currently evaluating the diagnostic criteria to come up with an official definition"
Now would be a good time then for people to contact her and try to educate her on just how severe this disease really is. How it can actually kill etc. We currently have a doorway to get throu to her about this disease, I hope people use it. If we could get her understanding how this illness actually is, that would be HUGE.
Id love to see Mark or Kina or someone else like that do an interview with her and share how worldwide we are left seeking out websites to find doctors and for treatment and management advice etc
i'm not getting the quoted article when clicking on the link provided in the OP?
There are three pages, with about 5 diseases covered (two on most pages).
hi, thanks WillowJ but still can't find it on all 3 pages, must be me? not to worry
I left a comment, first expressing enthusiasm for the accuracy of the article (no one's going to get to all of the essentials in a limited space), and explaining that the IOM's job is to screw us over, not to improve the name or definition
2nd half of the article on Page 2.
still not there on my pc. have switched off adblocker and done a ctrl+f page search for "chronic fatigue" on all 3 pages and looked? strange.
If you go too far down, you'll be in a different article. But on page 2 it should start with a few paragraphs about Lyme, then CFS. It is a weird page setup which popup blockers or other anti-script features might not get along with. Basically multiple articles loading onto the same page in an automated and variable manner.
I guess that could get their attention as they wont understand at all how as a patient group so many of us are actually unhappy about it.
I cant with my computer get the page up to read it. I was going to comment.
found it...you have to go to page 2 directlyy under the first article on page 1. if i use the "page 2" click at the bottom of the page, under the last article, it goes to page 2 of that article, not the top one, got it now.
You can also try a Google Site Search
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