Actually, I've been in contact with Mr. Iverson and have had several long conversations with him.
Time for the Big Talk. How's the CAA doing?
- Thread starter hvs
- Start date
Actually, I've been in contact with Mr. Iverson and have had several long conversations with him.
justinreilly
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I don't know if you're posting this in response to anything I've said. If so, I would like CAA to effectively lobby.
I'm not proposing any of us going to capitol hill. But any and all patients can do 'mini-lobbying' such as simply going on the CAA's advocacy section and sending an email to the powers that be in congress and HHS, writing your own email to these people like your members of congress, HHS secy, CDC and NIH head, Obama and Biden, donating money to Malcolm Hooper's efforts and contacting media if and when you feel you can make a persuasive case for coverage.
justinreilly
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Jennie-
Great. I'd love it if we could all work together to bring CAA crashing down.
:Retro smile: Your comments on this topic are certainly welcome.
Do you mind asking him if we can contact him?
Thank you,
Justin
fred
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Do logic and ethics not dictate that a 'not for profit' organisation whose aim is to promote the wellbeing of a large number of disadvantaged yet still compos mentis people should have a mechanism for facilitating strategic input from that group of people?
I note that AVAAZ successfully polls millions of people internationally and sets its priorties according to the wishes of the majority.
rebecca1995
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Isn't the obvious solution for the Board to end Ms. McCleary's contract? Am I missing something?
I had never read the Marc Iverson letter, either...quite disturbing! The "mainstreaming" strategies that Iverson was against have certainly been actualized in those Spark! brochures. I mean, what's more mainstream than Bill Reeves, the Reeves Criteria, and endorsing CBT/GET?
I had never read the Marc Iverson letter, either...quite disturbing! The "mainstreaming" strategies that Iverson was against have certainly been actualized in those Spark! brochures. I mean, what's more mainstream than Bill Reeves, the Reeves Criteria, and endorsing CBT/GET?
justinreilly
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Koan,
Ha, ha. I think you say some quite wise things!
I guess I'm repeating myself, but yes, patient organizations like CAA are definitely who should be doing the vast majority of lobbying and PR, education, etc. They can develop expertise and relationships and, present info in a meaningful way. There is NO substitute for this.
In addition, we can all do our little things to the extent we have the time and health- little things like form emails on CAA website, like mentioned above. I like the idea of drafting petitions to media organizations like the one that was done here recently by sproggle for the Panorama TV show (I personally am not planning to do this anytime soon). Of course, noone should go making some big meeting with a Senator or media outlet if they are not ready or able to make a coherent, persuasive case.
Carrying on being justinreilly. i gotta be me.
justinreilly
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You're not missing anything, to my knowledge. Obviously the Board does not want to do this, presumptively because they feel she's doing a peachy job and agree with her strategies, as outlined in Mr. Iverson's letter.
If she were to be let go, we would loose continuity, expertise and institution memory (which are very important), but, IMO, she has shown over the years no willingness to change despite so much patient criticism and the effective failure of her strategies. There seems to be no reasonable possibility of her changing her approach, so the board should end her contract.
Am I missing something?
Jennie-
Great. I'd love it if we could all work together to bring CAA crashing down.
Even though you used smileys and perhaps intended to be funny, I find this comment deeply offensive. Why would I participate in a conversation such as that? I am only interested in the CFS community uniting against its common enemy - CFS. That's where I invest my extremely limited energy.
Jennie-
Great. I'd love it if we could all work together to bring CAA crashing down.
Your comments on this topic are certainly welcome.
Do you mind asking him if we can contact him?
Thank you,
Justin
Justin,
I can't stand by and give my tacit support with silence. I have to agree with and defend Jennie, why on earth would she want to help facilitate a conversation when these types of statements are a direct attack on all she and others have worked to accomplish?
I'm baffled. I understand what it is you want/need to change with the CAA but I am truly baffled by how you are approaching the subject.
starryeyes
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Justin said he doesn't want to see the CAA crash down. He wants change. Many of us want the CAA to change and it's probably never going to.
So what's your solution Shane, Jennie, anybody? I feel that some of you are quite pleased with all that the CAA does and you don't need them to change at all because the damage they've done to patients hasn't affected you.
So what's your solution Shane, Jennie, anybody? I feel that some of you are quite pleased with all that the CAA does and you don't need them to change at all because the damage they've done to patients hasn't affected you.
Lily
*Believe*
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Teej, I'm not "quite pleased" at all with the CAA, but I will not engage in this idea that the organization is evil. I don't like statements that refer to the "damage they've done". It's overkill, and I feel that it is damaging your and Justin's credibility. I have a lot of respect for both of you and the potential you both have as advocates, but I think you're going overboard with some of your statements and it makes me very uncomfortable.
Lily
justinreilly
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I am sorry I offended you (of course was not meant seriously, I would not want you to take part in a conversation destructive of what you have worked for). You have put a lot, lot more effort into CAA than I have of course and I really thank you for all you have done and do!! You have gone way beyond the call of duty.
I was attempting to make light of (IMO) a sad and painful situation. Sometimes with this disease I personally have to laugh or I'd cry. This isn't everyone's approach and I should probably be more sensitive to that. I will try to do better and, if possible, make it up to you.
CBS- sorry I offended you too.
justinreilly
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I'm sorry I made you uncomfortable. I don't think CAA is evil, just IMO misguided. But I do think the non-research side, as a whole, does us harm. I truly want CAA (including its non-research side) to grow and prosper, but only an org that represents and helps patients. CAA has to change. What other way is there to change it?
Please give me/us more feedback on how you think i or my position is incredible, any solutions or other thoughts you have. Thanks for being in this dialogue!!
I have to go to an appointment. Will check in later.
I'm with CBS on this.
tee - Justin said this as well:
To me that is not productive.
jr - I love your passion and enthusiasm. I just question the effectiveness of extremism. And I'm personally not of an anarchistism belief stucture. I don't believe that killing the CAA and getting rid of all the good that it is doing would immediately lead to the rising up of better structures. I think it would take years, and so much good would be lost. And in the meantime - what? I don't want to lose the biobank (but I do want it to include gradual onset asap), the other good research they are funding, all the good articles in their archives.... (sorry - too tired to go on)
While there are many important things I'm waiting for the CAA to change, they've improved so much in my eyes in the last year, that I'm willing to give them the benefit of the doubt that the positive changes will continue. And to work with them, to say what I feel needs to be changed, and to give them time to make the changes. Not everything can be changed immediately like the bad pacing article was. (and that responsiveness and Jennie's presence here are part of why I now have this faith).
I'm full of cliches now - don't throw out the baby with the bathwater - you catch more flies with honey - ok - I'll spare you and stop there.
ETA - yikes - I'm such a slow typer - lots of posts in between me starting and posting this.
I agree with Lily too.
And WOW - jr - I'm very impressed with your ability to pull back & see another point of view, and to apologize. Thank you very much for that.
and tee - can you see some of the positive changes the CAA has made in the past year?
tee - Justin said this as well:
Jennie-
Great. I'd love it if we could all work together to bring CAA crashing down.
To me that is not productive.
jr - I love your passion and enthusiasm. I just question the effectiveness of extremism. And I'm personally not of an anarchistism belief stucture. I don't believe that killing the CAA and getting rid of all the good that it is doing would immediately lead to the rising up of better structures. I think it would take years, and so much good would be lost. And in the meantime - what? I don't want to lose the biobank (but I do want it to include gradual onset asap), the other good research they are funding, all the good articles in their archives.... (sorry - too tired to go on)
While there are many important things I'm waiting for the CAA to change, they've improved so much in my eyes in the last year, that I'm willing to give them the benefit of the doubt that the positive changes will continue. And to work with them, to say what I feel needs to be changed, and to give them time to make the changes. Not everything can be changed immediately like the bad pacing article was. (and that responsiveness and Jennie's presence here are part of why I now have this faith).
I'm full of cliches now - don't throw out the baby with the bathwater - you catch more flies with honey - ok - I'll spare you and stop there.
ETA - yikes - I'm such a slow typer - lots of posts in between me starting and posting this.
I agree with Lily too.
And WOW - jr - I'm very impressed with your ability to pull back & see another point of view, and to apologize. Thank you very much for that.
and tee - can you see some of the positive changes the CAA has made in the past year?
Justin,
Thank you. I do admire your energy and your unwillingness to settle for anything less than what we all deserve. I want us all to find a way (and along that way we'll have to ask some hard questions) to work together to support each other. Jennie and many in the CAA are us.
We don't have all the time in the world for change but I do think that one of the real challenges we face is dealing with all that has gone on in the past. Some of that is anger and some of it is changing cultures and some of it I suspect quite frankly is dealing with past decisions that were made out of what may have felt like financial and political necessity (not malice).
Personally, I refused the CFS label for 13 years. I was working in medical research at the time and I was not going to be saddled with all the baggage that was attached to CFS. In trying to right the ship, I feel that at least in my case, I owe those that stood and fought through much harder and murkier times a large measure of respect.
Shane
Dr. Yes
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Marc Iverson's Letter of Resignation from the CAA (complete)
I almost missed Marc Iverson's letter as it was only linked to here; considering the speed of posting I thought it would be a good idea to reprint it in its entirety, so that more people get a chance to read it.
-------------------------------------------
Posted to Co-Cure Fri, 13 Jul 2001 17:13:18 -0400 by Ed Isenberg
Marc Iverson Resigns from Board of CFIDS Association of America
Marc Iverson (PWC, 22 years) was the Founder and, for its first 13 years, Chairman of The CFIDS Association of America....
Marc has asked me to make special mention of the fact that his resignation letter is copyrighted. While permission is granted to reprint it for any non-profit purpose, it must be in whole and without editing or excerpting, and must include the copyright notice as part of such reprinting. Marc was quite clear that, if necessary, he is prepared to take action to make sure his remarks are not altered in any way or taken out of context.
Formal Statement of Resignation from
The Board of Directors of
The CFIDS Association of America and
All Association Committees and Positions of Leadership
Marc M. Iverson, Founder
June 22, 2001
Fellow Directors of The CFIDS Association of America, I, Marc M. Iverson, hereby resign from the Board of Directors of The CFIDS Association of America, and all Association committees and positions of leadership, effective 8:00 a.m. EDT, June 22, 2001.
As the founder of The CFIDS Association of America, Chairman of the Board of Directors of the Association for 13 of its 14 years, a major donor and fundraiser for the Association, and the sole permanent member of the Association's Board of Directors, I have reached this decision with great difficulty and extensive contemplation, and only after lengthy discussions with the President and Chief Executive Officer (CEO) of the Association, K. Kimberly Kenney, for whom I continue to have professional respect and admiration.
There are five primary reasons for my resignation.
First, I am overwhelmed with family obligations and the struggle with my own health problems.
Second, I have a different vision for the Association, and different priorities for the allocation of Association resources, than the CEO. I favor aggressive/activist "PWC focused" strategies with the objective of providing the Association's constituency (persons with CFS/CFIDS and related disorders) with what it wants. In contrast, the CEO favors more conservative "mainstreaming" strategies intended to define and communicate CFS/CFIDS issues to the public (including the medical community, the media, and policy-makers) with the objective of making CFS/CFIDS a mainstream disorder.
Third, I hold a different position than the CEO with respect to certain critical Association policies and programs. For example:
(1) I favor and the CEO opposes immediately adopting a very aggressive stance opposing the discriminatory and incredibly damaging name CFS/CFIDS (chronic fatigue syndrome/chronic fatigue and immune dysfunction syndrome) and I believe efforts to change public attitudes are virtually hopeless and wasted with the present name;
(2) I favor and the CEO opposes directly providing a system that permits patients to exchange health care (physician) referrals;
(3) I favor and the CEO opposes immediately allocating resources to collect and disseminate far more information on treatment;
(4) I favor and the CEO opposes immediately revamping the Chronicle to make it more timely, accurate and informative;
(5) I favor and the CEO opposes allocating/raising resources to build a state-of-the-art fully interactive web site that serves as a real time "clearing house for information" thereby enabling PWCs and interested parties to exchange information and ideas in a safe and civil environment;
(6) I favor and the CEO opposes immediately developing specific, objectively measurable goals and benchmarks to measure the success or failure of all Association programs and the staff paid to implement them;
(7) I favor and the CEO opposes placing a much greater emphasis on raising funds for, initiating, and reporting CFS/CFIDS research; and,
(8) I favor and the CEO opposes gradually shifting resources away from programs not financially supported by Association donors, such as the Association's extensive lobbying efforts.
Fourth, I have been caught in a "moral dilemma" of defending major Association policies/actions with which I strongly disagree.
Fifth, I can not fulfill my responsibilities (as defined in the Association Bylaws and further outlined in the 2001 Association Operating Plan).
Fellow Directors, I believe I've made reasonable (if not extraordinary) efforts to state my case, but have been unable to persuade Ms. Kenney that the Association should drastically change. Ms. Kenney is the driving force behind the Association and, although major policies and plans must be approved by the Association's Board of Directors, Ms. Kenney (as CEO) and her professional staff are charged with the responsibilities of both developing and implementing the Association's policies and plans. Without Ms. Kenney's support, it is unrealistic to believe that the positions I advocate will be adopted by the Association's leadership or implemented. Accordingly, it is time for me to step aside.
I'm proud of what the Association has stood for and accomplished in the past. I wish you well individually and as an organization.
Marc Iverson
2001 Marc Iverson. Permission is granted to reproduce this statement in whole, without editing or abridgement, for any nonprofit purpose. This copyright notice must be included in any reproduction. All other rights reserved.
From http://www.co-cure.org/Iverson.htm
I almost missed Marc Iverson's letter as it was only linked to here; considering the speed of posting I thought it would be a good idea to reprint it in its entirety, so that more people get a chance to read it.
-------------------------------------------
Posted to Co-Cure Fri, 13 Jul 2001 17:13:18 -0400 by Ed Isenberg
Marc Iverson Resigns from Board of CFIDS Association of America
Marc Iverson (PWC, 22 years) was the Founder and, for its first 13 years, Chairman of The CFIDS Association of America....
Marc has asked me to make special mention of the fact that his resignation letter is copyrighted. While permission is granted to reprint it for any non-profit purpose, it must be in whole and without editing or excerpting, and must include the copyright notice as part of such reprinting. Marc was quite clear that, if necessary, he is prepared to take action to make sure his remarks are not altered in any way or taken out of context.
Formal Statement of Resignation from
The Board of Directors of
The CFIDS Association of America and
All Association Committees and Positions of Leadership
Marc M. Iverson, Founder
June 22, 2001
Fellow Directors of The CFIDS Association of America, I, Marc M. Iverson, hereby resign from the Board of Directors of The CFIDS Association of America, and all Association committees and positions of leadership, effective 8:00 a.m. EDT, June 22, 2001.
As the founder of The CFIDS Association of America, Chairman of the Board of Directors of the Association for 13 of its 14 years, a major donor and fundraiser for the Association, and the sole permanent member of the Association's Board of Directors, I have reached this decision with great difficulty and extensive contemplation, and only after lengthy discussions with the President and Chief Executive Officer (CEO) of the Association, K. Kimberly Kenney, for whom I continue to have professional respect and admiration.
There are five primary reasons for my resignation.
First, I am overwhelmed with family obligations and the struggle with my own health problems.
Second, I have a different vision for the Association, and different priorities for the allocation of Association resources, than the CEO. I favor aggressive/activist "PWC focused" strategies with the objective of providing the Association's constituency (persons with CFS/CFIDS and related disorders) with what it wants. In contrast, the CEO favors more conservative "mainstreaming" strategies intended to define and communicate CFS/CFIDS issues to the public (including the medical community, the media, and policy-makers) with the objective of making CFS/CFIDS a mainstream disorder.
Third, I hold a different position than the CEO with respect to certain critical Association policies and programs. For example:
(1) I favor and the CEO opposes immediately adopting a very aggressive stance opposing the discriminatory and incredibly damaging name CFS/CFIDS (chronic fatigue syndrome/chronic fatigue and immune dysfunction syndrome) and I believe efforts to change public attitudes are virtually hopeless and wasted with the present name;
(2) I favor and the CEO opposes directly providing a system that permits patients to exchange health care (physician) referrals;
(3) I favor and the CEO opposes immediately allocating resources to collect and disseminate far more information on treatment;
(4) I favor and the CEO opposes immediately revamping the Chronicle to make it more timely, accurate and informative;
(5) I favor and the CEO opposes allocating/raising resources to build a state-of-the-art fully interactive web site that serves as a real time "clearing house for information" thereby enabling PWCs and interested parties to exchange information and ideas in a safe and civil environment;
(6) I favor and the CEO opposes immediately developing specific, objectively measurable goals and benchmarks to measure the success or failure of all Association programs and the staff paid to implement them;
(7) I favor and the CEO opposes placing a much greater emphasis on raising funds for, initiating, and reporting CFS/CFIDS research; and,
(8) I favor and the CEO opposes gradually shifting resources away from programs not financially supported by Association donors, such as the Association's extensive lobbying efforts.
Fourth, I have been caught in a "moral dilemma" of defending major Association policies/actions with which I strongly disagree.
Fifth, I can not fulfill my responsibilities (as defined in the Association Bylaws and further outlined in the 2001 Association Operating Plan).
Fellow Directors, I believe I've made reasonable (if not extraordinary) efforts to state my case, but have been unable to persuade Ms. Kenney that the Association should drastically change. Ms. Kenney is the driving force behind the Association and, although major policies and plans must be approved by the Association's Board of Directors, Ms. Kenney (as CEO) and her professional staff are charged with the responsibilities of both developing and implementing the Association's policies and plans. Without Ms. Kenney's support, it is unrealistic to believe that the positions I advocate will be adopted by the Association's leadership or implemented. Accordingly, it is time for me to step aside.
I'm proud of what the Association has stood for and accomplished in the past. I wish you well individually and as an organization.
Marc Iverson
2001 Marc Iverson. Permission is granted to reproduce this statement in whole, without editing or abridgement, for any nonprofit purpose. This copyright notice must be included in any reproduction. All other rights reserved.
From http://www.co-cure.org/Iverson.htm
Dr. Yes,
A very timely and useful contribution (why am I not surprised). Perhaps it might be worth asking the CAA if they would care to comment on where the CAA stands today on each of the concerns expressed by Mr. Iverson, specifically the second and third concerns (I suspect they would be more than happy to answer item 3(7)).
A very timely and useful contribution (why am I not surprised). Perhaps it might be worth asking the CAA if they would care to comment on where the CAA stands today on each of the concerns expressed by Mr. Iverson, specifically the second and third concerns (I suspect they would be more than happy to answer item 3(7)).
Lily
*Believe*
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- 677
Justin
No need for apology, I’m aware you can’t make me feel anything. So I’ll take responsibility for my own feelings and rephrase my previous statement to: When I read some of your and Teej’s remarks, I feel uncomfortable.
I’m not going back to find all the posts that have made me cringe. Let me be clear that there have been plenty of your posts that I felt really good about. I’ve found myself cringing more in recent weeks.
Recently (yesterday?) you encouraged members to stop supporting the CAA completely, and having them replaced by another organization. When CBS challenged you with the reality of what you were proposing you said that’s not really what you intended (words to that effect anyway). I think it’s more effective to say what you mean.
You’ve indicated that you’d like the CAA to grow and prosper, but time and again you’ve also indicated that’s impossible.
Today you made the statement again about bringing the CAA down and no matter how many smilies you added, I don’t believe anyone could really see that as joking. (Major cringe-factor for me.) As Island Finn said, it’s not productive. I believe that it hurts your credibility, and for someone with your obvious talent, I think that would be too bad, not only for you, but for us as well.
I’ve made statements myself, that it’s possible that the CAA should stick to research and leave the true advocacy to another organization. And while I don’t see any other organization ready to step up to the plate, sometimes you just have to bite the bullet and take a chance. Am I ready to do that? Not quite yet.
I’ve also indicated the organization may be so entrenched in their beliefs it may be impossible to transform without a change in leadership. That’s based on my business experience and looking at the CAA’s history. Jenny's presence here though, seems sincere. I believe in giving the benefit of the doubt and providing the right atmosphere to foster change.
I don’t have any solutions, however I’ve negotiated enough in business to know that you don’t really get anywhere by putting people on the defensive and being disrespectful. (Although, it just occurred to me that as a lawyer, your experience is probably different.No disrespect intended.) Again, my experience is that you need to know what you want, deal in specifics, have the rationale/data to back it up and possess persuasive communication and negotiating skills to get the job done. The CAA is an advocacy organization, but they are a business and we are their customers. They need to meet or exceed our expectations or we need to go elsewhere. (Even if it is easier said than done.)
I believe as a group this forum could create a document listing the specific changes and expectations for the CAA, and submit it to them for their comment. As CBS said “they are us”.
I believe this forum has already proven they can effect change. Big change requires diligence and patience. The anger has to be put aside.
Just my 2 err..make that 5 cents.
Lily
ETA: I agree with Shane, I'd like to hear that as well.
No need for apology, I’m aware you can’t make me feel anything. So I’ll take responsibility for my own feelings and rephrase my previous statement to: When I read some of your and Teej’s remarks, I feel uncomfortable.
I’m not going back to find all the posts that have made me cringe. Let me be clear that there have been plenty of your posts that I felt really good about. I’ve found myself cringing more in recent weeks.
Recently (yesterday?) you encouraged members to stop supporting the CAA completely, and having them replaced by another organization. When CBS challenged you with the reality of what you were proposing you said that’s not really what you intended (words to that effect anyway). I think it’s more effective to say what you mean.
You’ve indicated that you’d like the CAA to grow and prosper, but time and again you’ve also indicated that’s impossible.
Today you made the statement again about bringing the CAA down and no matter how many smilies you added, I don’t believe anyone could really see that as joking. (Major cringe-factor for me.) As Island Finn said, it’s not productive. I believe that it hurts your credibility, and for someone with your obvious talent, I think that would be too bad, not only for you, but for us as well.
I’ve made statements myself, that it’s possible that the CAA should stick to research and leave the true advocacy to another organization. And while I don’t see any other organization ready to step up to the plate, sometimes you just have to bite the bullet and take a chance. Am I ready to do that? Not quite yet.
I’ve also indicated the organization may be so entrenched in their beliefs it may be impossible to transform without a change in leadership. That’s based on my business experience and looking at the CAA’s history. Jenny's presence here though, seems sincere. I believe in giving the benefit of the doubt and providing the right atmosphere to foster change.
I don’t have any solutions, however I’ve negotiated enough in business to know that you don’t really get anywhere by putting people on the defensive and being disrespectful. (Although, it just occurred to me that as a lawyer, your experience is probably different.No disrespect intended.) Again, my experience is that you need to know what you want, deal in specifics, have the rationale/data to back it up and possess persuasive communication and negotiating skills to get the job done. The CAA is an advocacy organization, but they are a business and we are their customers. They need to meet or exceed our expectations or we need to go elsewhere. (Even if it is easier said than done.)
I believe as a group this forum could create a document listing the specific changes and expectations for the CAA, and submit it to them for their comment. As CBS said “they are us”.
I believe this forum has already proven they can effect change. Big change requires diligence and patience. The anger has to be put aside.
Just my 2 err..make that 5 cents.
Lily
ETA: I agree with Shane, I'd like to hear that as well.