Myra McClure States She's Withdrawn From NIH SEP Panel !

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Here's the email exchange from Marty today...Bon appetit' !



I sent the following email to Myra McClure today:

"Please withdraw from the U.S. Government's SEP (Special Emphasis Panel) for ME/CFS.

I have lost 35 years of my adult life to this disease. We have to demand researchers who recognize the disease, and we have made this clear to the other members of this panel."

Her reply:

"I already have."


Thank you Marty!!

Katrina

We'll want to confirm this of course;)
 

leaves

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Lol yes :))

But I say: let's demand for some more changes and get rid of more of those clowns. I feel empowered today!!
I think we should suggest some alternatives indeed, cause we don't want to leave middle east in a state of anarchy.
 

meadowlark

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I keep pinching myself, and it seems I'm not dreaming. I can't be full-out ecstatic til this is formally confirmed and McClure is replaced with someone qualified and objective. But my emotions keep running away with me .... wow, David slew Goliath.
 

leaves

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I know!!
Seriously we shouldn't stop here. Let's send more letters about the dentists, the psychologists, the opera singers and the wood workers in the committee. They don't belong there!!
We should think about appropriate alternatives, ask them if they are willing to serve, and DEMAND they get into the committee.

weve had enough.
 

*GG*

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I know!!
Seriously we shouldn't stop here. Let's send more letters about the dentists, the psychologists, the opera singers and the wood workers in the committee. They don't belong there!!

We should think about appropriate alternatives, ask them if they are willing to serve, and DEMAND they get into the committee.

weve had enough.
I hope you are joking about Opera singers and wood workers?!

GG
 

WillowJ

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what was a Brit doing on NIH panel anyway?

then again, I wouldn't have complained if we could get KDM or Behan there.
 

justinreilly

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I keep pinching myself, and it seems I'm not dreaming. I can't be full-out ecstatic til this is formally confirmed and McClure is replaced with someone qualified and objective. But my emotions keep running away with me .... wow, David slew Goliath.
Well, yes. Remember how ecstatic we were when they moved Reeves out. Unfortunately Unger has not changed the CDC "CFS" program and said she's pretty much not going to. So, this is good, but lets see what happens. btw lets get Unger replaced with someone good. a boy can dream.
 

leela

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Unger has not changed the CDC "CFS" program and said she's pretty much not going to
Eek, I had not heard that. Where and how did she express this revolting attitude?
What on EARTH do these people have against this lil' ol' disease, anyway?

Perhaps if we all grew foul-smelling suppurating lesions on our faces that every few minutes spewed retroviral spores into the air in wee visible pink clouds, they might consider addressing it.
Until then, well, we'll just continue to lie here "enjoying" ourselves, shan't we.
 

WillowJ

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Eek, I had not heard that. Where and how did she express this revolting attitude?
What on EARTH do these people have against this lil' ol' disease, anyway?
http://forums.aboutmecfs.org/content.php?251-CDC-at-the-CFSAC-Meeting
Cort rather overstates the past biomedical research (for instance, cortisol doesn't do anything to change the misperceptions about the Disease, particularly not from Reeves disease), but there you have Unger's statement (which I think is probably as much related to pressure from one or more superiors as to her own opinion, as she seems to have been a reasonably smart and decent person prior to taking on this job)

See Unger's statement to the press here (Unger is quoted on pages 1 and 3):
http://abcnews.go.com/Health/MindMo...ersonality-disorders/story?id=12102316&page=1
 

leela

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Thanks for the links, Willow.
I'm really tired, so I might hav read wrong, but Unger seems to be just hedging a little and saying, "Yeah, the personality stuff is probably secondary to the disease state."
THis is more promising than stating "nothing's going to change"? Maybe?
 

WillowJ

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she said one couldn't tell whether the personality stuff was secondary or primary. and she specifically said CFS was "psychosomatic" (meaning it originates with an emotional or social problem, but is expressed with a medical or medicalized complaint, like feeling butterflies in the stomach when having stage fright, or being lonely and thinking up an excuse to go see a doctor just to have someone to talk to)

she did express a possible willingness to budge on Empirical definition

again, I don't think the problem originates with her

but I also don't think there will be any significant changes out of CDC without GOA investigation or Congressional Hearings or something like that