Free "Webinar" on Chronic Fatigue Syndrome

[PlateletGal]

"You are invited to join Association president & CEO Kim McCleary and scientific director Suzanne Vernon, PhD, on Wednesday, May 28, at 2 p.m. (EDT) for an overview of the CFS science, presented live via the Internet.

Learn what research has already uncovered about CFS and how it affects the human body. Discover what’s happening now in the field of CFS research. Hear what Dr. Vernon and the Association envision as the next steps on the path to discovery, and find out how The Campaign to Accelerate CFS Research is designed to build the capacity of the scientific community all over the world to find the answers underlying this complex illness."



I sent the info via private mail to a few of you. If you are interested in participating in this free webinar, please send me a note or message and I will zip you the information.  = )

[Curls]

It's hear!  It's hear!

The webinar is now available online:
http://www.kintera.org/TR.asp?a=hrKQJXOAIdLQIaI&s=brKMKXMBIfIOL0PKItF&m=njL2JcPSKpJ7F

(The link split, so you have to copy each piece into the browser.)

It's the whole presentation they gave on CFS research in recently years!

Interestingly, the slides are a little fuzzier than in the original webinar presentation...but they've still useable.

[Curls]

Truthfully I think they should have just changed the title of this so it was more inclusive of EBV.  It's the same illness as CFS, at least as far as we can tell right now.

Guess I got a little discouraged when medhelp deleted my one posting there about the lobbying.  Really, if they'd read and understood it, they wouldn't have.

I'll bop over, but please make sure to post here if you see something good that folks here should be aware of (and that will encourage cross attention.)

[PlateletGal]

"I wonder why so few people with CFS have an interest in this stuff?"

I wonder the same thing. There is research coming out every single day on this illness and we have to stay ahead to make sure we are getting treated appropriately. Many physicians don't know squat about this illness.

You may want to check the EAV forum, Curls. There are so many people posting in there who have CFS.

[Curls]

I saw that article on Kerr's work.  Interesting.  It's still needs more repeating and refining.  I couldn't figure out what the subgroups were.  I'd like to see the orignal research.  It's too bad the US is so behind.

I do vaguely remember that spinal test.  Maybe that's why I blocked it out.  It can't be distinctive enough though, of it would have been picked up by now?  It is looking like simplier, real, tests if any of this can get to the finish line.  

I wonder why so few people with CFS have an interest in this stuff?

Sorry to hear about your day.  It somehow killed mine for productivity.  However, if they get it posted, that will be just as good, except you'll be able to stop and absorb it - which is what I will do when it's posted!  (I took notes during, but they leave much, much to be desired.)

[PlateletGal]

P.S. --- Google the following for a recent article on CFS (AKA: myalgic encephalomyelitis):

"The Economist" + "The roots of chronic fatigue"

[PlateletGal]

I didn't make the call... I was having a bad CFS day. = (

[PlateletGal]

"It sounds like we might be much closer to a diagnostic blood test."

A blood test... instead of spinal fluid ? I know Red Labs USA is doing a test to diagnose both fibro & CFS (two separate conditions.. a lot of people don't know that), but they use spinal fluid. (eek !)

[Curls]

I'm so glad you'd posted it.  I was dropped off one of their lists...even though I was on the rest, and never changed anything.  Gotta love computers.  They know when you're traveling and need a break from emails?  Well, I'm back on the list, and it's one I like getting!

[Curls]

Hi, it's already happened on Wednesday.  Glad you're interested.  The Cfids Assoc is going to try to get it posted on their website.  I'll post the link here when I get emailed about it.  You can check them out in general too, www.cfids.org

From what I remember:
- There are gene sets showing themselves as turned on - even showing subtypes to this illness, and differences tween FM & CFS in the genes (not in clinical symptoms as much).
- There's lacate acid build up in the brain fluid
- Communication LINKs tween immune system particles is different than normal, as well as differences in the counts and activation of particles.
- HPA (hypothamlus, pituitary axis) changes but I dont' remember the specifics.

It went on from there... A very good overview of the physically measured changes in CFS patients.  Great I think and underused for helping family & friends "see" it & picture it as real.

Also a good sense of all the ways it can be effecting you, so it's easier to feel like it makes sense.

It sounds like we might be much closer to a diagnostic blood test.  That would make all the difference in getting treatments.  i.e. blood test means, taken seriously, funded appropriately, name change more possible...

It went so fast that I'm sure I've left out a lot of good stuff.  Again, I'll post the link when I get it, but meanwhile you can always check their site for it.

[benedwards1]

please send me the info  thanks

[Curls]

That was very good.  Any body else see it?  Anything interested picked up from it?

[Curls]

Hi Platelet, that's odd.  i didn't get the email.  Can you zip it to me?  I'd like to here it.  I met Suzanne a few weeks ago, and she's very together, and a real researcher type...who moved to cfids associate from CDC.  I've been hoping with the move that the cfids assoc would be better able to feed us info on the most recent research.  Maybe it's started!

Thanks.