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Kim McCleary letter to Lancet

garcia

Aristocrat Extraordinaire
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976
Location
UK
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.
 

slayadragon

Senior Member
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1,122
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twitpic.com/photos/SlayaDragon
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.....
 

slayadragon

Senior Member
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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.

http://www.change.org/petitions/pet...ion-of-america-as-our-advocacy-representative

Best, Lisa
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
Should we give her a cookie?

YEAH, here's the cookie she deserves!

EvilDoughboy.jpg
 

Dolphin

Senior Member
Messages
17,567
If it takes her this long to write a simple letter she needs to look for another job. I recommend McDonald's.
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?
 

Dolphin

Senior Member
Messages
17,567
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.
 

slayadragon

Senior Member
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1,122
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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.
 

Dolphin

Senior Member
Messages
17,567
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
 

slayadragon

Senior Member
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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.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
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."
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
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!
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
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?

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.
 

LaurelW

Senior Member
Messages
642
Location
Utah
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.
 

Dolphin

Senior Member
Messages
17,567
Err because we have a debilitating neuro-immune disease which makes even the most simple of tasks nigh-on-impossible?
So posts generally on patient forums are of low quality?/patients should stay out of discussions because they don't have the brain power?

McCleary on the other hand is 100% healthy.
So then if people want the CAA replaced, it will be run by healthy people?