Discussion in 'General ME/CFS News' started by SpecialK82, Mar 5, 2011.
Nice job - states our case well!
How long has it been since the study came out?
Should we give her a cookie?
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!
Way too little, way too late. If it takes her this long to write a simple letter she needs to look for another job. I recommend McDonald's.
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.....
It was late - but I'm still glad to see it.
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.
YEAH, here's the cookie she deserves!
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
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?
I hope other people will send a letter in. With 250 words and 5 refs, one can't make all (or even nearly all) the points that need to be made.
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.
I'm not going to spend my time defending her but just to point out that some/all of her comments came from Thursday when the paper hadn't even been published.
* as far as I know - at least one did
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.
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."
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.
A step in the right direction, but still seemed pretty wimpy and wet-noodle to me. She's a smart woman, she can do better, and I wish she would.
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?
You can also try a Google Site Search
Separate names with a comma.