Austin Tx 4-4-09 Conference: Press coverage

[Sunnyand7777]

Hello to one and all!
Sure wish you could all be here. I managed to stumble in on the Greyhound. Needless to say, very tired and sleepy. I am so excited about this event. The more we can stay in the forefront of the public eye the better. Here is a link and article/blog from The Statesman--Austin's main newspaper. The reporter, Ms. Roser, is very intrigued about our situation. Here is her first report.

Central Texas Digest
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Home > Salud

Mysterious disease focus of meeting in Austin Saturday
By Mary Ann Roser | Thursday, April 2, 2009, 11:07 AM

Melinda Crawley of Ringgold, Ga., came down with itchy sores on her face and scalp in 2006. Her eyes were inflamed, and then the oddest thing happened. She wiped her face with a white cloth, she said, and burgundy-colored threads came off of her skin.

Crawley, 66, said she and her husband, Larry, 69, who has sores all over his body, discovered they have Morgellons Disease, a phenomenon that some mainstream doctors question the existence of and the U.S. Centers for Disease Control and Prevention is investigating.

The ailment is described as a mysterious skin disease in which fibers protrude from sores and patients report other symptoms ranging from fatigue to mental fog. The Crawleys have experienced all of that, Melinda Crawley said.

“It completely alters your life,” she said.

Morgellons is the focus of an all-day conference in Austin Saturday for patients, researchers and others who are interested in the disease. This second annual scientific/medical conference on Morgellons (the first also was in Austin) is free but a $25 donation is suggested, said Crawley, media coordinator for the Charles E. Holman Foundation/New Morgellons Order, the conference’s nonprofit sponsor.

It will feature key researchers studying Morgellons Disease, including Randy S. Wymore at the Center for Investigation of Morgellons at Oklahoma State University in Tulsa. According to the school’s Web site, Wymore, an assistant professor of pharmacology and physiology, “is assuring people with the disease that they are not delusional, as some have accused.”

More than 20,000 families in the U.S. have reported having the illness, Crawley said. She provided a map, which shows where cases have been reported.

The disorder is sometimes managed like chronic Lyme disease, Crawley said. Patients with persistent Lyme disease say they, too, have problems being diagnosed and receiving treatment from mainstream doctors who question the validity of their illness.

Ginger Savely, a nurse practitioner who treated patients with chronic Lyme disease in Austin also will speak at the conference and now does so in San Francisco, also treats Morgellons patients.

The conference runs from 8 a.m. to 5 p.m. at Westoak Woods Baptist Church conference room, 2900 Slaughter Lane.

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[ladycolorado]

I wanted to personally thank you Sunnyand777. Please keep us appraised on any results if you find out more about how the confernece goes. I wish I could go but I really have no way to travel at this time.

(LC)

[hilly]

Yes, Sunny, thankyou so much.... do tell us how it all goes.. wish I could be there with you. BTW Ginger Savely is now a doctor ... FNP and DNP.... Hilly x

[ladycolorado]

Really Hilly? That is awesome to know that Ginger Savely is a doctor now.

(LC)

[Katinka]

Guess we are all waiting for some NEWS!

[imatrainwreck]

Wow, I'm excited to hear too. I think it's very brave of everyone who could go to this type of meeting. I would be having a mental breakdown being around that many people who had it. especially, since I don't know how I got it. I would be worried for weeks that I might get a different "strain" and create a mad powerful super "strain", of course i already had extreme anxiety and social phobia before this, so never mind me But I still can't help but imagine my problems times a hundred in one room. For now, I will stick to the internet

[Sadsack]

Ginger's doctorate is in nursing - I think a "DNP" - rather than an "MD". Great news none the less.
SS

[hilly]

Yes Sadsack... 'Doctor of Nursing Practice' but a very commendable achievement.

[Sadsack]

Did anyone on this board attend the Austin Conference? I'd love to know how it went, if anything new came out, etc.
SS

[kmar]

I know that last year CBS/Austin covered the event. I checked the site and found nothing. I called and was told:

"We did not get a chance to get out there this year"

So I asked if he knew if any other local stations covered it and he said "No" because last night he himself monitored all the local news stations and did not see it.

He did say that he ONLY monitors other stations thru the NEWS part and there is a possibility it could have been added in at the end of one of those other stations.

Here is all other media in Austin, TX:

Austin Newspapers - Austin Newspaper Guide - Texas TX

I have not checked any newspapers yet.


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