Let’s Discuss the CFS Situation
July 22, 2007 by laura
Filed under Diseases & Conditions
OK People – now that the CDC has admitted to using funds for other projects that were allocated to CFS research – and are now trying to fix that mess, by saying that CFS is a real illness, and isn’t make believe. I would like to know what you think about it.
Personally, it makes absolutely no difference to me. I know that CFS is real, as does my health care team. While there was a time when it was really important for people to believe me, I am no longer in that place.
Now that the CDC recognizes the mistake that was made, perhaps they can start working on a cure. Now that researchers in Australia are getting close to finding out what causes CFS.
I know there are lots of differing opinions out there. I would like to hear them.
Please leave a comment. I am listening.
Want to know more? Here is an article from the New York Times
I am the founder for National Invisible Chronic Illness Awareness Week, held annually in Sept. This year it is Sept 10-16, 2007. Based on the content of your blog I thought you would be interested in knowing about the week, as well as our awareness video at http://www.invisibleillness.com .
You are welcome to share any of the information from the web site with your readers, including the video. This year’s theme is “Living with invisible illness is a roller coaster. Help a friend hold on!” There will be 3-4 chat seminars each day and there are items such as t-shirts, car decals, pins, etc. to help spread the word.
Thank you so much for your efforts in blogging about chronic conditions. Nearly 1 in 2 people in the USA have a chronic condition and 96% of it is invisible. We hope to bring people together to encourage one another, as well as increase the awareness that one may “look great” but not feel so wonderful.
Thanks so much for your blog, helping others understand illness and pain.
What they did is inexcusable, and those in charge should be prosecuted. The CDC has bungled this from the start (I really tried to read all of Ossler’s Web but it’s SO long).
We may know that it’s real–because we live it. But I know that I have been treated badly by doctors, family, and people in general because they think I’m just lazy or crazy.
And if their screw up delayed tests or potential treatments, that’s years we can’t get back.
Nah, I’m not bitter
I think it’s extremely important. For many present sufferers and for the future ones. I agree that for those who can afford living without working doesn’t make much difference because you lose your life anyway, meaning friends, family and probably partner, but still is important in many aspects.
Hi Lisa,
thanks for the comment. I am definitely going to do a little something for Invisible Illness Awareness week. And would love to write a little review of your book. Sent you an email about it.
look forward to hearing from you.
Angel,
I understand your anger. I just don’t feel the need to waste any of my energy on something that I can’t control.
Well I do put forth energy on things that I cant control…but I feel that this situation is pointless to get angry about. Perhaps if I was a lot worse off, I might feel differently.
That said, anger can start fires – and that is what the CDC needs. Someone to start a big raging fire underneath them. Maybe there is something we can do about that.
Daniel,
you make a good point. Perhaps I feel blase about it, is because I have already found a way to beat CFS. While I am currently struggling doesn’t mean that I won’t be back on top again.
I sometimes lose sight of the fact that I am the minority when it comes to CFS. Thanks for straightening me out.