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CFS mentioned at Oprah.com

Nielk

Senior Member
Messages
6,970
http://www.oprah.com/health/do-you-have-an-autoimmune-disease-mystery-illness

The illness that's ready for a makeover.

What you feel: After any type of physical or mental exertion (like taking a brisk walk or giving a presentation), you feel utterly spent for a full day; you often wake up tired even after a good night's rest; your memory is spotty; your muscles are achy.

What you did: You had your thyroid checked, and it's normal. You talked to a therapist, but you don't feel depressed.

What it might be: **Chronic Fatigue Syndrome (CFS) (also known as myalgic encephalomyelitis), a complex illness that affects between 1 million and 4 million Americans (more than 80 percent of them women). It's such an enigma that the Institute of Medicine is currently evaluating the diagnostic criteria to come up with an official definition—and possibly change the name to something more legit-sounding than "chronic fatigue syndrome." Because roughly half of the patients with CFS/ME developed it after getting struck by something like mono or Epstein-Barr, experts once suspected it was another type of virus, explains Nancy Klimas, MD, chair of Clinical Immunology at Nova Southeastern University. But they've recently noticed an autoimmune component, as well, says Klimas.

What to do:Find a specialist who will take your symptoms seriously. There's no cure, and full recovery is rare, but research shows that the majority of patients who seek help do feel better over time.

**The explanation for your discomfort could be any number of things, but this is one to bring up with your doctor, who is, of course, the person you should be talking to.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
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?
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
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.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
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?

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
 
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manna

Senior Member
Messages
392
i'm not getting the quoted article when clicking on the link provided in the OP?
 
Messages
15,786
Messages
15,786
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.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
and explaining that the IOM's job is to screw us over, not to improve the name or definition :p

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.
 

manna

Senior Member
Messages
392
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.