Discussion in 'Action Alerts and Advocacy' started by leaves, Feb 21, 2011.
Just wondering about public opinion..
Ha so far that's not a lot of variance ..
Wow... I say this is very impressive.
If indeed 95% of the patients feel that the current leadership should resign and caa should change course, we have to file a petition. There does not seem to be any base for the current leadership. Don't cling to power, 95% of the patients cant be wrong/confused/Ill informed.
I've long believed
this was the only legitimate way we could show the CAA what we really mean, and that it's not only the most marginal voices that feel that change is needed.
Obviously we need a decent sample size for accuracy, so we really need to get this poll out there.
Management at CAA truly believes that they are doing the right thing and that the voices of opposition we keep hearing from a select few do not represent the masses. Quantifying our collective opinion, versus just stating it individually, is the only ammunition we have to show them otherwise.
Well said mojoey. They are still going to have to have wisdom and courage to make a change.
I don't know. I think the people that make up the CAA at this point in time are playing to their strengths. Kim is good with working with Washington and getting the issues in front of politicians. Susan is good at organizing research although I think she may be a little wobbly on the correct definitions! So they are doing and going in the direction of the people who are in charge. No problem.
The problem is that the patient population want's an advocacy group that can
1- define the illness for researchers, doctors and patients.
2- educate the public, medical and politicians in an aggressive manor.
3- create and release strong press releases that counter mis-information quickly and with the same amount of coverage as the opposition.
4- lobby for changes in public and government recognition of the illness.
5- speak out loudly against patient abuses by medical personnel, government policies and public perceptions.
So if we accept that the CAA does not do any of these things, is not going to do any of these things and that these thing need to be done then the only logical solution is to build an organization dedicated to doing those things for us. Fund this organization and it's very specific mandate to do these things. Cause it don't work without money. (sad dog sighs)
P.s. sorry leaves I didn't vote cause you didn't have a category for ;
'The CAA is not doing what we need so we just leave them to do what they are going to do and go somewhere else for what we need.' (big grins)
10 Years Later
10 years ago Marc Iverson resigned from the CAA, the organization he founded, due to major disagreements with Kim McCleary, as explained in his resignation letter below.
How much has changed since then?
Well said Joey. I added my vote. I can think of 180,000 reasons why the CAA needs both a change of leadership and a change of direction.
These results are really interesting.....
I agree we need a patient org that can do all these things. My first choice by very far is that CAA and PANDORA would do these things!! I doesn't help anyone- not the orgs, not the patients, researchers, doctors, future patients, America, the world- if they don't do this stuff and CAA just falls apart. CAA and PANDORA could be great forces for us. They are already set up and have some funding.
So we need to start new a new org or orgs that can do this and tell everyone not to support CAA until they change. But we also need CAA to change.
Also, I really strongly think that Kim McCleary does not have a good 'inside voice' and is not "good with working with Washington and getting the issues in front of politicians." I don't understand how anyone could think that.
Right; nothing has changed! People have been calling for her to go for years and years and nothing has changed. This latest 'incident' is nothing new, in fact it would have surprised me if she had said something appropriate and helpful instead of something destructive. The only unusual thing here were the stakes were higher than usual so the harm that she does was magnified more than usual. She will continue to do this just as she has done for years and years.
Cort and Jennie looked so lonely, I almost voted with them:
Just to confirm, you need to be a member to vote right? I hope so. I want this poll to be an accurate reflection of what people here think with no "gaming". Although i will acknowledge that if this poll were done at some random point earlier, I would think CAA would have more support.
Just got the CFIDSlink email. McCleary says the exact same thing again about GET and CBT being modestly beneficial. I don't remember requesting another slap in the face.
Speaking of unity...
It looks like there is a great deal of unity after all. The people have spoken (94%) and the CAA is purportedly listening. Will anything be done about this?
Given McCleary's clueless comments on the PACE trial, these results do not surprise me.
I know that the results right now are highly skewed towards the CAA needing both a change on direction and new leadership. Even if you don't agree with the majority, I want to encourage everyone share their opinion.
As for Justin's question, it is my understanding that you need to sign in to vote and you can't vote more than once. Still, this is not a "scientific poll" but rather a "self-selecting" poll. Even so, given that PR is thought to be relatively more supportive of the CAA than some other sites, I do hope that the CAA is listening.
Is Kim McCleary synonymous with the CAA? Where does the CAA end and KM start? Where does the CAA board stand on this? Does the board think that the CAA has a problem (if nothing else, a problem connecting with the patient community)?
The debacle that was the CAA's initial handling of the PACE trial comments to the press is not out of character with past experiences. IMO, the summaries of the limitations of the PACE trial that were posted on the CAA were just sad. Not terrible, just sad. That train left the station and was three days down the track when the summaries were posted. I don't think there's much chance of getting world-wide press coverage for the KM's summaries.
As for the impact of the PACE trial, in KM's own words: "It is bound to be cited as the gold standard for years to come, even with its many weaknesses." It will not only be cited, it will have been given credibility (in spite of it's many weakness that were left unexposed) by the CAA's initial response, the response (more like an endorsement without qualification) that was heard around the world.
Not sure exactly what you're driving at with the first two questions, other than what you're asking in the last two.
Of course the Board is at the 'top' of the org and hires and fires the CEO and tells her what to do. So they need to be held responsible. If you're asking whether Kim has entrenched herself so well in CAA that she effectively pulls the strings. I think the answer is yes. Whether the board chooses to let her hold on to those strings in light of this increasing crisis of confidence will be very interesting. As I said about a year ago, I think the board is derelicting it's fiduciary duty of absolute loyalty to caa by allowing McCleary to drive the org into the ground to the point that it will have to dissolve at some point in the not too distant future.
fwiw- as i've said before i'd like to know answers to these last two questions. Jennie said in comments to the interview article that the board does not want to get rid of McCleary or reduce her $178K compensation (including benefits). In fact Jennie, at least, feels that's a bargain for her. I wonder if all this has been a wake up call for them. nothing else has, but now the cries of dissatisfaction are operatic. If the end results of the poll are as now- 94% want her to go and caa change direction- i think they will lose what little fig leaf of credibility they had.
In light of this, I am beginning to wonder who their donors are if they are so recalcitrant to change. Someone speculated to me they might be insurers. The board seems to think it can operate with total impunity. They are smart people. Smart people would realize they needed to change if they depended on the support of patients at large since in this unscientific rough poll 94% are extremely unsatisfied. Is the fact they are not changing because a major donor or donors is somehow connected to the insurance industry or CDC? Obviously we don't know because CAA will not reveal the identity of it's donors. If they do not get rid of McCleary, this question needs to be squarely addressed.
Thanks for this link, WOW, some things apparently never change, perhaps that is why our situation just seems to stay the same?!
Time to talk to my sister so she quits donating to them, seems like a waste!
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