Dearest Angels,
This seems to be my day for passing on links to articles!
This one is about the proper treatment for CFS.
http://www.medscape.com/viewarticle/837577
Hugs, Elaine
Nice to see new research, but it's incredibly flawed. They discussed treatments and included graded exercise while noting that about 50% of the respondents said they were harmed by the treatment and still not rejecting it as a treatment. The only treatments they offer is CBT as if depression were a cause not effect of CFS and forms of exercise for a condition even now named for its being exacerbated by exertion. I've had this for 30 years and they still don't have a real name, diagnostic criteria or treatment.
Oh dear, I didn't read the article thoroughly since I don't have CFS. I'm sorry it wasn't very good. Should I take the post down?
Hugs, Elaine
Hi Elaine,
The article was good insofar as it was more complete than other articles. It's just that there is still no real treatment for CFS so they go with what has been published. It's good that they are testing the useless treatments but their emphasis is off. They know that fatigue and inability to withstand exercise are the key features of CFS, but they test graded exercise as a treatment and don't warn that the test itself can worsen the disease in half the cases. It's the same with Sjogren's: they always seem to undervalue the central symptom of fatigue when they talk about treatment. They focus on dry mouth and not fatigue. I wonder if this goes back to seeing all fatigue as laziness and self indulgence.
Elaine thank you, because we all keep looking for hope in something new. We all will just keep looking. Any info you find is appreciated for what ever we can take from it, and sometimes may lead to more.
susanep
Well I have a theory and it goes like this:
ALL Journals, TV shows, radio news shows (fill in the blank) have to HAVE articles/programs/information to EXIST. And they EXIST to gt sponsors which pay for the most part for the programs/shows/whatever.
So every day the writers, publishers, program producers are sitting around saying "WHAT CAN WE WRITE ABOUT (BROADCAST ABOUT) TODAY?"
Then they come up with ideas, send folks out to find material to fill up the space/time whatever.
It doesn't HAVE to be new, it doesn't have to be fresh or original or meaningful. It just has to be topical and cite a few references, famous people, or experts.
EVERYONE is doing this, I honestly believe.
Just look how Cosmopolitan keeps filling their pages with beauty tips, clothes ideas, sex ideas, and famous people. There cannot BE that many beauty tips, but you break it down to parts of the body, parts of the face, inside the body, outside the body and then you can cover it all for ever. Why just how to treat your lips can be an entire article!
We could do this for advice for Sjogren's! And we'd make a mint.
Oh well, am I cynical?
You think?
Hugs, Elaine
Well, at least the medical community is talking about it and making it real. That helps. CFS is a horrible disease and often crippling for some. It worries me that I may also have it b/c I tested positive for 3 viruses, one being EBV. One of my providers wants me to take anti virals. I am going to start those in the next few days. She thinks it would take a load off my immune system. I've had horrible problems with fatigue and for 20 years no one every checked me for viruses. But I have very high titers to 3 of the offending viruses that many with CFS seem to have.
The disease needs more research as well as treatments. One size does not fit all and it's even moreso with CFS and fibromyalgia.
Thanks for the article Elaine.
EBV is that Epstein Barr Virus Deb?
I of course test positive. This is what Wikipedia says:
"Most people become infected with EBV and gain adaptive immunity. In the United States, about half of all five-year-old children and about 90 percent of adults have evidence of previous infection."
I wouldn't think that testing positive would mean that much.
I know how debilitating fatigue is, since it is the hall mark of Immune System Disorders. I believe that genetic markers and physical markers at the nerve and biochemical level will be found to substantiate many conditions like Fibro and CFS, and yet many conditions will continue to plague us without accurate diagnostic testing, and, even more depressing,s without clear medications or cure.