posted
Hi all, This was on my local news. If you google CDC you can see the story. It's about time. I was dxed with cfids for 22yrs and finally with lyme 2 yrs ago. Hopefully this will help people be believed. Take care all. Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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posted
Good that people are being believed, BUT - is anyone else suspicious of the timing?
There's now this big push from the CDC to have CFS/CFIDS diagnosed more and given more credibility. New public awareness campaign: http://www.cdc.gov/cfs/PSAGerberding.htm
This is happening just as they're fighting harder than ever to put an end to long-term Lyme treatment. Curious.
Keep in mind the recommendation from most IDSA-influenced docs is that "post-Lyme syndrome" is usually CFS. The formal definition of CFS (Fukuda et al, 1994) encourages them to do this:
"Conditions that do not Exclude a Diagnosis of CFS:
3. Any condition, such as Lyme disease or syphillis[sic], that was treated with definitive therapy before development of chronic symptoms."
And who defines "definitive therapy?" The IDSA of course - at least for the CDC.
My thought is that the CDC now sees the value in legitimizing CFS/CFIDS - to keep people from pursuing Lyme treatment.
CDC: "I believe you, it's not in your head... CFS is real and lots of people get it after 'definitive therapy' for Lyme." Not good, IMO.
Posts: 621 | From US | Registered: Jun 2006
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posted
Hi Fighter, I sooooo hope you are wrong. Trying to see this as a positive thing. But who knows. Time will tell. Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I think Idfighter hit the nail on the head!
I do believe that many if not most disability policies now exclude CFS and Fibromyalgia as a covered illness. I think they would have a lot harder time excluding lyme disease since it has a known infectious cause.
My niece told me that our State administered medicaid medical coverage excludes most treatments related to fibromyalgia. I find this outrageous!! It's much easier to deny coverage if the illness is of unknown origin.
Very upsetting. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Well Joyce, I hope I'm wrong too. But even if I am, I can't help but think that the IDSA must be pleased with this new CFS public awareness campaign, which is called "Get Informed. Get Diagnosed. Get Help."
(Can you imagine the CDC having a campaign like that for Lyme? 'Get Diagnosed'??)
Of course if there are people out there who truly have CFS/CFIDS and not Lyme, who wind up getting the help they need as a result, that would be a very good thing.
And it would be great to see CFS/CFIDS patients treated with more dignity. (I was once one too.)
posted
Oh me, oh my! What's their next trick going to be?
They go and change the lyme disease guidelines to be so NOT in our favor and JUST NOW decide to recognize chronic fatigue syndrome as real. They have allowed both to happen in such a short time span too!
Coincidence? I think NOT!
I think it's just another way for them to close their eyes to the increased incidence and persistence of lyme disease. I think it's just a matter of time though, before it's all uncovered!
We can't be ignored for too much longer, so just grab a rope and hang on tight!
The things that make you go hmmm...
I'll get off my soapbox now...
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
This last post made me laugh, only sex and sleeping in the bed. Why do they think so many people do so much else in bed, which they do?
Because much of the time they can't get OUT of the bed. Know a lot of Lyme people who do a lot of work from the bed, paid work, computer work, etc.
And not just work. All of the other things sick people still try to do despite their illness and weakness.
Well, anyway, it made ME laugh to tbink about someone at the CDC not "getting it!"
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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