Time for the Big Talk. How's the CAA doing?

justinreilly

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I agree that Mary Schweitzer would be excellent. However, I worry that serving on the CAA board might have an adverse effect on her precarious health. I guess Mary would have to make that determination.

For an update on how Mary's doing see -

http://cfsknowledgecenter.ning.com/profiles/blogs/back-in-the-saddle-again-1
Thanks Jerry. I was concerned too. Mary said she expected her health to improve after a few months on Ampligen. After she agreed to serve, I asked her if she wanted to wait until she felt better and she said no, to go ahead.
 

Jerry S

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Thanks Jerry. I was concerned too. Mary said she expected her health to improve after a few months on Ampligen. After she agreed to serve, I asked her if she wanted to wait until she felt better and she said no, to go ahead.

That's great news, Justin. She is is so brilliant and knows the ropes.

This one of my favorite essays of hers, in case anyone is unfamiliar with her writing.

http://cfsknowledgecenter.ning.com/profiles/blogs/the-orewellian-newspeak-of-me

Her blog at the ME-CFS Community can be found at:

http://cfsknowledgecenter.ning.com/profiles/blog/list?user=32qw535d82un8

Her new blog, "Slightly Alive" is at:

http://slightlyalive.blogspot.com/

Best wishes,
Jerry
 

Dr. Yes

Shame on You
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868
If she's willing, thinks she could be effective in this role, and certain she can handle it health-wise...

Then another emphatic YES vote for Mary Schweitzer!
 

oerganix

Senior Member
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611
That's great news, Justin. She is is so brilliant and knows the ropes.

This one of my favorite essays of hers, in case anyone is unfamiliar with her writing.

http://cfsknowledgecenter.ning.com/profiles/blogs/the-orewellian-newspeak-of-me

Her blog at the ME-CFS Community can be found at:

http://cfsknowledgecenter.ning.com/profiles/blog/list?user=32qw535d82un8

Her new blog, "Slightly Alive" is at:

http://slightlyalive.blogspot.com/

Best wishes,
Jerry
Thanks for that link on the newspeak of Reeves/Wessely. I came to the same conclusion independently...that they use doublespeak, another Orwellian term where Big Brother simply decides that words now mean the opposite of what they once did.
 

oerganix

Senior Member
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611
I wonder if the proposed re-focusing of policies and programs suggested by CAA founder Marc Iverson, upon his resignation in 2001, has any relevance to the topic “How’s the CAA doing” today?

http://www.co-cure.org/Iverson.htm

Thanks for posting that link. I think it says volumes. Basically, we're still about where we were then, on most issues, and what has changed has mostly not been because of CAA/Kim McCleary.

I recommend all forum members interested in this issue read that letter from Marc Iverson.
 

Lily

*Believe*
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677
Thanks for posting that link. I think it says volumes. Basically, we're still about where we were then, on most issues, and what has changed has mostly not been because of CAA/Kim McCleary.

I recommend all forum members interested in this issue read that letter from Marc Iverson.

Yes, it does speak volumes, and also illuminates the challenges even someone like Mary Schweitzer will face.

Jenny, you may have answered this already, do the Board members have limited terms and if so can they serve consecutive terms, and is there a limit to the consecutive terms? How long on average have the current Board members been in place?

Thanks
Lily
 

jspotila

Senior Member
Messages
1,099
Jenny, you may have answered this already, do the Board members have limited terms and if so can they serve consecutive terms, and is there a limit to the consecutive terms? How long on average have the current Board members been in place?

Thanks
Lily

Our by-laws state that Directors can be elected for a 1 to 3 year term. Directors can serve for six years consecutively, and then they must take a required one year break in service. I am now serving my fifth year on the Board, and the folks who came on with me are the longest serving group. The CEO is a member of the Board ex officio (by virtue of the office).
 

Lily

*Believe*
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677
Our by-laws state that Directors can be elected for a 1 to 3 year term. Directors can serve for six years consecutively, and then they must take a required one year break in service. I am now serving my fifth year on the Board, and the folks who came on with me are the longest serving group. The CEO is a member of the Board ex officio (by virtue of the office).

Thanks, Jenny!
 

rebecca1995

Apple, anyone?
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Groundswell of Support for Mary Schweizer

I am so into having her on the board, if her health can handle it! Thanks for organizing this, Justin. It's true grassroots activism in action ! :victory:
 

justinreilly

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Directors' Duty of Loyalty to CAA and Those it Represents Mandate They Make Changes

shipment of fail.jpg

I wonder if the proposed re-focusing of policies and programs suggested by CAA founder Marc Iverson, upon his resignation in 2001, has any relevance to the topic Hows the CAA doing today?

http://www.co-cure.org/Iverson.htm

I'm guessing your question is rhetorical. :Retro smile:

Wow! I've never seen this letter. It speaks volumes (I wrote this before I read others' comments using the same words!). Mr. Iverson did not want people to quote excerpts from the letter, but we can paraphrase. Please read the letter as it is very illuminating.

His fifth reason for resigning was Kim McCleary's resistance to having an online forum/clearinghouse. I am very glad to see that his wish is today manifest in these fora.

I wonder most about reason #8- that he wanted funding to move away from projects not supported by the membership such as CAA's substantial lobbying. I feel strongly we need more lobbying/ PR/ media outreach/ education. Mr. Iverson supported explicitly more education and info dissemination as outlined in the letter. I wonder what exactly he meant by wishing to do less lobbying. Was this because he didn't think lobbying was important or that he thought CAA was ineffective at it and someone else should do it?

Mr. Iverson, in his letter and through Mr. Eisenberg's intro, seemed clearly to be implying that people should donate to the research program but not, it seems, other programs. I don't want to twist his words or cite his ideas out of context. This is merely my interpretation.

He was strongly against the names 'CFS' or even 'CFIDS' as demeaning and unfair and felt that changing this was job #1, as public education and acceptance would never occur without a change.
Prescient!

Kim was opposing metrics and benchmarks for herself and staff.

Silicon, this is sad that how little things have changed and how clearly failed McCleary's central policies, as outlined in this letter, are.

He states that he was in a moral bind being duty bound to support views of the Association he did not share. This is an important point. Often directors feel this legal fiduciary duty of 'utmost loyalty' to the corporation requires them to defend the corporation's policies, views and actions even if one strongly disagrees. This defensive posture is adopted by directors of for-profit corps to prevent liability attaching to the corp or to oneself as director. Shareholders may sue directors personally in a shareholder 'derivative action' for not pursuing the maximum possible profit (this is a big part of why for-profit corps act 'sociopathically', but that's another discussion).

In a non-profit corp, especially CAA, this rational/reason doesn't apply strongly. A "charity" or nonprofit exists to do good for society and specifically for patients, in the case of a disease patient group, not merely to perpetuate and grow itself by accruing power and money. Dr. Vernon boasts that CAA has 'positioned itself' as the leading 'CFS' org. But this is not sufficient; it must, first and foremost, represent and help patients!

Thus a director should not defend the corp., it's views, actions and policies, if he in good conscience believes them to be damaging to patients. A director, in this instance, should remain silent, or speak his mind. I think the latter is usually the best course (surprise, surprise).

If a director sees something going on that he reasonably believes harms patients, he should oppose it in the boardroom and in speaking to the patient community generally. Keeping quiet allows the problems to persist which ultimately also harms and may destroy the corporation, as support for it erodes.

CAA is heading down this path. It's non-research activities are stagnating and drawing more and more criticism. Directors must fulfill their fiduciary duty of loyalty to CAA by making the changes patients demand!
 

justinreilly

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Did the membership have an opportunity to vote on Marc's strategies - or does the CAA's structure not operate in that way?

If the same structure were in place then as now, then no, unless there's something I don't know. There may be some provision for referendums, but I don't know and would doubt it.

The Board, as in any corp, has all the ultimate authority. It sets policy and directs the officers to take or not take broad actions. The Officers have responsibility for running the day to day operations, but unless I am mistaken, they technically can micromanage on any particular issue (although this is not practical or effective). Officers, including the President and CEO, serve at the pleasure of the Board (subject to any employment contract obligations to these employees).

"Members"/ donors/ patients do not elect the Board, the board perpetuates itself by choosing new board members. This is almost universal in non-profit boards according to a website provided by Jennie. It does allow some continuity, harmony and filling of skill 'holes' in the board. A board also has the time and duty to really consider a candidate and has an understanding of the Board, organization and subject matter (ME/CFIDS) all of which the average member typically does not.

The problem with a self perpetuating board like this is it's self-perpetuating! We need change and this structure is inherently resistant to change.
 

starryeyes

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Originally Posted by silicon
I wonder if the proposed re-focusing of policies and programs suggested by CAA founder Marc Iverson, upon his resignation in 2001, has any relevance to the topic Hows the CAA doing today?

http://www.co-cure.org/Iverson.htm


This letter dashes my hopes that the CAA will ever change because Marc, who started it, couldn't get support for his ideas and concluded that the CAA will never change so he left.

He wanted the CAA to focus on giving PWC a platform for aggressive activism but they want to stay conservative and mainstream and not rock the boat among many other changes that many of us here would like to see.

I think it's such a shame that Marc wasn't listened to. If the founder of the CAA isn't listened to what hope do we have?



 

starryeyes

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Justin, thanks so much for explaining how things work on Boards at organizations and for your thoughtful posts that show what we're up against.

Wild Daisy, I was wishing I'd known this before too. I believe I have read Marc's letter before but didn't put it together as well then although I recall I stopped supporting the CAA for awhile so I'm guessing that was around the same time. I then supported them again probably due to brainfog and now have stopped again after I learned about their Physician Education materials.

I think some of what they're doing is good but that doesn't make up for all the harm they've been causing us patients.

I know how frustrated many of us are with the CAA, I just can't imagine how extremely upsetting this must be for Marc Iverson. His vision was a great one. IMO It's a crime that the CAA was stolen away from him and used to commit harm on CFS patients.
 

MEKoan

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2,630
MeZombie has no internet access now and won't have for about a month. I think that's a shame because she always has such good insights into the politics of ME and she has been involved long enough to really grog the intricacies of this situation. I wish she were here! I have no idea what she would say, at all, but I know it would shed light on the dialogue in important ways.

I'm having a not good time, not good at all, lately and my cognition is crap but I do want to say that I think lobbying a fuzzy "product" is a mistake. We really need to have some facts, something someone can understand beyond our subjective experience (aka research) before we begin to lobby. Looks like we may well be in a good position to lobby soon... maybe now!

Disclaimer: I have no idea what Mezombie's thoughts would be on any of this! I just know she totally gets the history and all the intricate machinations... and she's not here! :worried:

but I don't think she'd agree with me.

:headache:
Koan
 
G

Gerwyn

Guest
Thanks for posting that link. I think it says volumes. Basically, we're still about where we were then, on most issues, and what has changed has mostly not been because of CAA/Kim McCleary.

I recommend all forum members interested in this issue read that letter from Marc Iverson.

I have and must say that i agree with all his policies and i find the CEO's position to be quite baffling.the gentlemans proposals would have transformed the CAA into an effective advocative institution
 

justinreilly

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No More Funding for CAA!

This letter dashes my hopes that the CAA will ever change because Marc, who started it, couldn't get support for his ideas and concluded that the CAA will never change so he left.

He wanted the CAA to focus on giving PWC a platform for aggressive activism but they want to stay conservative and mainstream and not rock the boat among many other changes that many of us here would like to see.

I think it's such a shame that Marc wasn't listened to. If the founder of the CAA isn't listened to what hope do we have?

Good point. We may not be able to change CAA. For example, getting one excellent person on the board will have a marginal effect of getting these issues up in the Boards' grille at every meeting. But this will probably not result in any significant change in the near term. But this step will hopefully get the board to take some actions, even if small, which is better than having them take no action. Every little thing we do does have an effect to either make CAA better or at least limit the damage it does.

This is why I am now strongly advocating that everyone vote with their wallets and their voices. Keep complaining, but also refrain from contributing to CAA until they start meaningful change (and contribute instead to the orgs that are advocating for us like WPI and 25%). Also educate other pwME about what CAA is doing and urge them to redirect contributions to WPI. This will:
(1) reduce the damage they can do in the near term, and
(2) force the Board to change; they have a clear fiduciary duty to protect CAA from collapse, or if they don't change,
(3) forcemake CAA either
(A) abandon the non-research part of their job (to our benefit) or
(B) shrink and die. If the Board lets CAA die by refusing to change, we will know that CAA would never have changed, no matter what. If this is the case, then we are better off with it dying. (I do not want this to happen. I would be much, much happier if CAA just changed instead of collapsing. That said, will not change unless pushed to the brink, so that is what we have to do).

Please help me with this effort. Our only hope is to band together in forcing change. I do not know the specifics of Marc Iverson and his situation. From this letter, I get the sense he was not willing to rally everyone together to go against CAA. It seems he felt it would be better to let it go than to wage a battle against it. This may be off base; please correct me. He was an amazing Chair and Founder, but he was only one person, who is sick like the rest of us. We may have better luck if we stick together and get more aggressive than he seems willing to have been. I think it was noble of him to support CAA even though it was going in a very different direction than he would have liked. With the passage of time, we have now seen even more proof that CAA was going in the wrong direction.

We have to try something different and up the ante or nothing will ever change.


Do you want to come back and read these posts in 10 more years wish " that we all just bit the bullet and faced that we were betrayed, not only by our governments and doctors, by our own patient organization. This would have been painful, but at least then we could have taken radical action to limit the damage it causes, or actually turn it around. Too bad I'm sitting here in 2020 still reading on the CAA website that there's no funding for "CFS", and that we should do CBT and GET. Too bad I'm still reading articles in the paper like "Chronic Fatigue: Are they Really Sick?" Too bad I and my friends from PR have been homeless for years with no health care now that my money ran out, I can't work and my government, doctors and family have abandoned me." This is what you will be regretting if we do not start doing everything we can to limit CAA's funding.

If CAA changes I will support them fully.

BTW- is anyone still in contact with Marc Iverson or know how to get into contact with him? I'd love to get the godfather's wisdom on the whole situation!
 

justinreilly

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Justin, thanks so much for explaining how things work on Boards at organizations and for your thoughtful posts that show what we're up against.
No problem. Thanks for reading! and supporting!

I then supported them again probably due to brainfog...
Ha, Ha! :D


I think some of what they're doing is good but that doesn't make up for all the harm they've been causing us patients.

I know how frustrated many of us are with the CAA, I just can't imagine how extremely upsetting this must be for Marc Iverson. His vision was a great one. IMO It's a crime that the CAA was stolen away from him and used to commit harm on CFS patients.

It is too bad.
 
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