Kim McCleary's response on cnn.com to the PACE Trial results bums me out.
EDIT: This text of the CNN article added:
[EDIT; reference to NPR piece and facebook added:]
and it bums me out here too on NPR (audio- CAA position from 2:00 to 2:30- and accompanying article, which differ a bit, here):
From the NPR audio at 2:15:
and here on CAA's facebook:
[Edit: first sentence edited]
McCleary's only reported problems with this study is that these therapies- GET and the evil version of CBT- which she calls beneficial on CAA's facebook page and in the NPR interview- aren't available in the US and that studies of psychological factors may make "CFS" patients feel that people are saying "CFS" is psychological. It seems apparent to me now that giving Peter White his own little section in the Spark materials to promote GET as the "only treatment proven effective" was no oversight or accident!
I did actually really hope that CAA would shift it's approach when all the criticism settled in and it's board had more time to reflect on the fact that every aware ME patient knows what CAA is doing and that consequently its revenues are going to continue to slide until there are not enough to support it at some point in the not too distant future.
Something is really weird here, imo. The fact that she is continuing in this destructive path i can comprehend. The worst that can happen to McCleary and Vernon is they milk CAA for all the cash they can before it implodes and they get an early retirement with a nice nest egg. But why is the board, who are unpaid patients and patients' relatives behind them?? They see McCleary piloting CAA into the ground while packing her parachute with cash to soften her landing. Why are all 15 or how ever many of them there are just sitting there and supporting her?? Is she hypnotoad? Using jedi mind tricks on them? Noone can be that charming. Am I missing something??
I understand she is a hard worker. She seems from Jennie Spotila's reports and what i have seen that she gets a good amount of work done. It seems from my outside view that she would be a truly excellent executive vice president or chief operations officer, but I am hardly alone in my view that she has shown (over 20 years) that she is a very bad choice for CEO of CAA.
Her comments on the PACE trial results are a case in point. The PACE paper isn't some random thing out of left field. We have known about the PACE trial and methodology for a long time and it has been criticized heavily and in detail by others. She should have been prepared and ready to say only four things when media called:
1. This is a scam
2. The cardinal feature of ME is PEM
3. They do this scam by using a fake definition to lie and say tired and depressed people have ME and
4. These 'therapies' are human rights abuses: lying to patients to tell them they have no disease and to exercise, the exact thing that will make their severe illness even worse.
George W. Bush was a moron and he could stay 'on message'. She can do this. Once she has mastered this, she can move on to 'freestyling', not before. And until she can deliver messages which benefit patients, she should not speak.
I would prefer it if CAA would truly represent patients views such as those i've seen expressed on this forum and mecfsforums.org. I think this would benefit both patients and CAA enormously. And I and, I believe, the patient community would really rally behind CAA and we would have true unity!
But if CAA's mission is simply to stimulate ME research, but not to represent or advocate for patients, then it should make this explicit to everyone to whom it is communicating and not speak on any issue other than stimulating ME research. If a reporter asks for commentary on other subjects, refer them to an org that explicitly represents patients such as PANDORA, MCWPA or WPI or other, hopefully more out-spoken orgs which may emerge.
CAA: GET and CBT effective
Blog entry posted by justinreilly, Feb 18, 2011.