Loyalty to CAA, not McCleary

This post is in response to a thread post made by CAA director Jennie Spotila on the "Suzanne Vernon, Agency Heads are Scared to Death" thread, post #66, p.7:

http://forums.aboutmecfs.org/showth...cared-to-death...if-XMRV-works-out-quot/page7

Jennie expresses serious frustration at the "laughable" things said about CAA and the people involved in it. She claims these criticisms have been quite "damaging to the CFS community."

Firstly, the community speaking it's mind is not damaging to anyone or anything but CAA, and rightly so.

I agree with CBS who said on the thread, that our issue, and I think the issue for patients in general regarding CAA, is trust. Jennie is entitled to her emotions, obviously, but her serious frustration with patients' questioning CAA seems odd to me. I perceive her tone to patients on PR as usually being that of a corporate spokesperson or lawyer defending a guilty corporate client. Now she acts more like a human being with frustration directed at us. That doesn't resonate with me.

She expresses serious frustration at the "laughable" things said about CAA and the people involved in it. It's obviously not laughable to me or approximately 94% of the patients that have answered polls here and on mecfsforums.com. Please show us that they are laughable! By 'show' I don't mean that Jennie or Cort should list the accomplishments of CAA again. I have carefully read these numerous posts by Cort and I agree that CAA has helped some good things happen. Please show patients through your actions in response to the requests made of you by patients on PR and elsewhere. That would honestly build trust with me and make me really happy!

I would really like CAA to gain the trust back of patients. Please do this so we can all move forward together. If not, it will continue to be unpleasant to work for or direct CAA and CAA will eventually implode and patients will be bereft of what is not that much effort away from being a really good org that will do a lot of good for patients and will prosper.

Jennie aims her frustration in her post at patients especially CBS. To CBS, she says Dr. Vernon "was generous with her time and insight, and asked for nothing in return except simple courtesy which you have failed to give her."
imo, CAA and it's officers and directors have noone to blame but yourselves and certainly not CBS who has stood with CAA and Vernon much longer than most patients.

Let me make very clear that I certainly never doubt Jennie's dedication and motivation for helping all pwME. Her long and distinguished record of service speaks for itself. She has been more active for much longer than I, for one, have been. I make this plea directly to Jennie:

You know a lot more about the situation, but fwiw, from my outsider perspective, i urge you to try to look with fresh eyes at the big picture of CAA.

Couldn't CAA benefit massively by changing direction and leadership? This is axiomatic to me and most patients. As a director, i know you are attempting to meet the legal requirement that you have utmost loyalty to CAA. I think, in this situation, the utmost loyalty to CAA, as opposed to loyalty to Kim McCleary, would dictate that you replace McCleary and change direction. If you do not, CAA will continue on it's downward trajectory and crash. That would clearly not evidence the utmostly loyal stewardship, imo.

Great leaders abandon missions if they are rendered obsolete or it becomes obvious they are untenable even if those missions were at the heart of the organization for a long time. There are many examples but two are IBM switched from making business machines to consulting on them. Nokia switched from making tires to making cellphones. These are only two of the many orgs that would have stagnated or died if they didn't make a radical change in direction. It is that time for CAA now.

Dear Reader, what do you think?

Comments

I think, as you point out, the poll speaks for itself. It's very hard to argue against those kinds of statistics.

In my mind it just keeps coming back to the comments she gave to the media regarding the PACE trial. If she was misquoted, she should say so and explain. If she wasn't, it not only demonstrates zero empathy with the people suffering, it also suggests an incredulous affinity with the psychiatric lobby.

They know we're upset, they know the recent uproar is as a result of this lacklustre media appearance, and yet they have still failed to do nothing to explain or retract...
 
She wasn't misquoted. She said the same thing in both of CAA's pieces on the PACE trial on their website.
 
Case closed, then. Let's get someone who is actually prepared to show in public that the way in which we continue to be treated is an outrage.
 
Justin, do you think we could start our own organization so to speak? As within our community of PWC? Trustful people, PWC for the people, not bought out, sold out souls, working with the elitist. I'm asking cuz i believe i saw u said u once practiced law. I know we could handle money immensely better with proper redistribution(to WPI or advocacy/activism, etc.)
 
Grape Funk;bt4492 said:
Justin, do you think we could start our own organization so to speak? As within our community of PWC? Trustful people, PWC for the people, not bought out, sold out souls, working with the elitist. I'm asking cuz i believe i saw u said u once practiced law. I know we could handle money immensely better with proper redistribution(to WPI or advocacy/activism, etc.)
I agree. There is a group kind of, sort of starting slowely on mecfsforums.com. Pls come on over:
http://www.mecfsforums.com/index.php/topic,5704.0.html
 

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