SpecialK82
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Kim McCleary letter to Lancet
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slayadragon
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How long has it been since the study came out?
Grape Funk
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Should we give her a cookie?
George
waitin' fer rabbits
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It takes a while to craft a good and thoughtful reply that can't be torn apart by the opposition. That said, considering what she makes she can buy us all cookies!
slayadragon
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Clearly she only wrote this letter because she felt forced to do so as a result of all the criticism. It was the opposite of what she said in the media interviews.
Too little, too late.
And this is the first patient victory over the CAA, I think. Keep them coming, please.....
Too little, too late.
And this is the first patient victory over the CAA, I think. Keep them coming, please.....
SpecialK82
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It was late - but I'm still glad to see it.
slayadragon
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Lots of people do the right thing because somebody's holding a gun to the back of their head.
That doesn't mean that they should be trusted to do the right thing on their own though.
Rather than take this as an indication that the CAA is a good organization that is trying to help us, I suggest taking it as an indication that it will not do anything in our best interests unless it feels that it has no other option, and thus to continue to put pressure on them to change further.
I encourage folks to consider reading here as a start.
http://www.change.org/petitions/pet...ion-of-america-as-our-advocacy-representative
Best, Lisa
Dreambirdie
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Dreambirdie
work in progress
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If you haven't yet done so, PLEASE SIGN THE PETITION TO DISASSOCIATE FROM THE CAA... and pass it along.
http://forums.aboutmecfs.org/showth...ep/page2&highlight=sign+petition+disassociate
http://forums.aboutmecfs.org/showth...ep/page2&highlight=sign+petition+disassociate
There is usually no particular rush in replying to medical journals.
Any reply to the PACE Trial would take a bit of work.
The trial only came out two weeks ago.
Also if it was so simple to write such a letter, given how many people are annoyed by it, why weren't more people doing it?
slayadragon
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If those were her comments about the study, why didn't she share them with the media when she had the chance?
The good thing about this about-face is that it's clear that somebody at the CAA (maybe on the board) is listening to the patients and forcing change.
It seems highly unlikely that enough change will come from Kim McCleary to be acceptable, but it's good to see that the patient activities have had an effect.
The good thing about this about-face is that it's clear that somebody at the CAA (maybe on the board) is listening to the patients and forcing change.
It seems highly unlikely that enough change will come from Kim McCleary to be acceptable, but it's good to see that the patient activities have had an effect.
slayadragon
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Here would have been a good time to share the views that this study was flawed.....rather than bemoaning that these interventions are not available in the U.S.
*
February 17, 2011: Quoted by CNN in response to the PACE trial results:
The president and CEO of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, Kim McCleary, said the study focused on treatments that many in the United States have no access to.
“I think it would be challenging, at least in the U.S. system, to purchase the services that they’ve tested in this trial,” she said in a telephone interview.
The alphabet soup of acronyms that represent the interventions used in Britain is “just not something that our health care service offers, is reimbursable, or is really available here,” McCleary said.
*
February 17, 2011: Quoted by CNN in response to the PACE trial results:
The president and CEO of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, Kim McCleary, said the study focused on treatments that many in the United States have no access to.
“I think it would be challenging, at least in the U.S. system, to purchase the services that they’ve tested in this trial,” she said in a telephone interview.
The alphabet soup of acronyms that represent the interventions used in Britain is “just not something that our health care service offers, is reimbursable, or is really available here,” McCleary said.
Dreambirdie
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Mindy Kitei says it best in her recent blog response to Jennifer Spotila:
"Jennifer Spotila, even if I had been on hallucinogens, I couldn’t have said something as unhelpful as what McCleary told CNN."
"Jennifer Spotila, even if I had been on hallucinogens, I couldn’t have said something as unhelpful as what McCleary told CNN."
Brilliant quote from Mindy DB!
Err because we have a debilitating neuro-immune disease which makes even the most simple of tasks nigh-on-impossible?
McCleary on the other hand is 100% healthy.
So posts generally on patient forums are of low quality?/patients should stay out of discussions because they don't have the brain power?
So then if people want the CAA replaced, it will be run by healthy people?