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

[justinreilly]

Sorry

To me that is not productive.

You're right. It was in bad taste. Jennie did not deserve to be subjected to this.

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)

I should not have stated it that way in my first post. I have explained my misstatement and misimpression I gave. I do not believe in anarchism either. We need strong institutions. I would like to see CAA stronger, more influential and more effective. I'll just add again I very much do not want CAA to totally collapse and I don't think that's a real possiblity. I also very much do not want CAA to continue as it has (with its non-research activities).

I should have presented my view more clearly as:

- CAA has to change

- Patients' critiques and contributions have not had a substantial effect on CAA

- So, time to try something new

- Convincing people to donate to other orgs instead, with a resulting decline in revenue to CAA is the only way I can envision influencing CAA to make substantial change any time in the near future. Do people think this would be effective or ineffective? What other ideas do people have that have a realistic chance of effecting change sooner rather than later? I hope there is a way that I have overlooked. I value all your comments tremendously on how to get what we want done in the best way.

- Trying to get donations re-routed to other orgs that are at least as effective, if not more effective, would result in positive signal to these 'better' orgs and increase their good output, while limiting the 'less good' output of CAA. Simply an argument for efficient allocation of capital.

- CAA Board is smart, they would NOT let this decline in revenue continue to occur and would cause CAA to change, at which point I, and I think many others, would fully support CAA which would lead to an upward spiral in its revenues and clout. And I will rejoice.

- I think it is very unlikely CAA will collapse as a result of my stupid little posts, but, arguendo only, if it did, I was just saying this worst case scenario would be bad, just not the end of the world and certainly the potential great benefits- a 'better' CAA- are more than worth the risk. Even if we were able to push revenues down substantially, it is entirely in the board's hands to reverse this, so talking about this idea or indeed carrying it out, will not destroy CAA. I should have made it clear my 'worst case scenario/ what if?' musings were really basically abstract musings or playing devil's advocate with myself and I should have put them in parentheses or kept them to myself.

To me, the crux of the matter is what Teej pointed out- to me the evidence indicates that CAA board and officers think everything is copacetic and there's no need for change. They have not indicated, as far as I'm aware, any intention of changing. There has been justification and information provided about why CAA does what it does (which has educated me), but no indication that perhaps some of what it is doing should really be reexamined because it's not working. 'We'll forward your comments to the full board' is the most I have heard in this direction. And I think we should get more of at least a statement of intention to change or a 'we're seriously looking at these X decisions because they may have merit.' Maybe there were statements made that I am not aware of (I have not read about 200 posts on this thread, for example).

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 wasn't aware they improved so much in the last year. Thanks for that important view. It makes me feel... calmer!

 

[Roy S]

I started writing a post this morning but gave up and took a long nap on a bad day. 40 years of CFS has affected my brain a bit. Sometimes it's just not possible to keep up with the ebb and flow of things on the CFS sites I frequent. This discussion has really moved along today and is past the point at which I wanted to comment on some other things. I also don't like to get into contentious issues on bad days. However, for now-

About a year ago I became so alarmed at the state of CFS in the world that I spent months writing this article. I tried to put everything I wanted to say in one place, and my thoughts haven't really changed. Among many other things it references Marc's letter of resignation. I got caught in the same sort of moral dilemma he wrote about; as have many others.

http://cfsknowledgecenter.ning.com/forum/topics/unknown-cfs-congressional


The response I received from the CAA, and especially everything else that has happened since then has not given me hope that any suggestions or criticisms or whatever is going to make any substantial difference in the way the CAA operates.

Getting people to vent is a well known mollifying tactic that works quite well with most people; then you just go on with business as usual. It doesn't work with me. It does at times irritate me and others. I don't see substantial change from all of this, and I know I'm not the only one who feels that way.


The WPI has given me some hope because competition has been needed for a very long time. I think one of the reasons the CAA has come under so much criticism lately is that there is now an option that is growing.

 

[leelaplay]

Hi jr

I've got a few rough ideas to throw out (as in present for contemplation, not discard - although that is a possible, and acceptable to me, outcome.)

Maybe we could start a new thread, titled something like "what we would like from the CAA". Everyone could contribute ideas, we could discuss them, and even have polls if need be. SOmeone eminently capable (like you??? with help???) could be spearheading it- compiling lists, refining points, putting up polls.......... And we could perhaps even put timelines on things and/or prioritize them. And when we submit them to the CAA, we could do it from PR forum or we could attach a petition and individually indicate support.

I also liked Shane's idea:

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)).

ETA - RoyS - we cross-posted. Yours is a voice of much experience. Thanks for being here on a bad day. I am going to read your article now.

 

[Dolphin]

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.

With regard to donating money to Malcolm Hooper: Malcolm Hooper is a man who is long-retired. He married his wife in 1959 [(according to a book I have) (50/51 years ago) and few people who go to university marry before university] so "must" be in his 70s. I don't recall him looking for money for himself. That's not to say that I think people shouldn't dip into their pockets for the cause.

 

[Stuart]

There are about 200,000 reasons Kim McCleary might want to keep going the way she has done and not address Marc Iverson's concerns (or ours for that matter).

Anyone who wants to join the board is likely happy with the status quo, anyone to be confirmed by the board is required to be in agreement with the status quo.

In some nonprofits I have familiarity with the CEO/President has a great deal of power. Many require a membership community to the nonprofit, the board is voted for by membership. The fact that this one doesn't should be concerning regardless of how well it is acting. The fact that it is seen to not be acting in the best interest of the community it is representing, by that community, is a crisis.

The reorganization of the CAA has been proposed before. Both that and Iverson's recommendations have been ignored. The continuation of perpetuating wishy washy stances and then making barbed comments at the "alternate" research and advocacy group that the community is increasingly embracing ended the hope of change for the CAA for many of the community.

The board members have terms, it is seems past time for the CEO's term to be over.

If there was the option for the community or membership to vote, it is likely a majority would give a vote of "No Confidence" in the current CEO.

 

[gracenote]

Hey Stuart,

You have 3 posts to go until you reach your goal of 100. I know you already can access the library, but look, you're almost there! I wonder what your 100th post will be?

 

[Lily]

Justin, Island Finn, Roy S, Stuart -

There is so much I'd like to say about each of your posts. It pains me so that I don't have the energy or ability to do that. It makes me want to cry actually. But suffice it to say I agree so much with what you all have said and appreciate the hell out of all of you.

Lily

 

[justinreilly]

With regard to donating money to Malcolm Hooper: Malcolm Hooper is a man who is long-retired. He married his wife in 1959 [(according to a book I have) (50/51 years ago) and few people who go to university marry before university] so "must" be in his 70s. I don't recall him looking for money for himself. That's not to say that I think people shouldn't dip into their pockets for the cause.

I didn't mean Hooper personally. Doesn't he and margaret williams contribute their efforts under the auspices of an organization like ME Action UK?

 

[justinreilly]

Justin, Island Finn, Roy S, Stuart -

There is so much I'd like to say about each of your posts. It pains me so that I don't have the energy or ability to do that. It makes me want to cry actually. But suffice it to say I agree so much with what you all have said and appreciate the hell out of all of you.

Lily

awww! I appreciate you too.

 

[Dolphin]

I didn't mean Hooper personally. Doesn't he and margaret williams contribute their efforts under the auspices of an organization like ME Action UK?

There's not really an organisation called MEActionUK. There is an active yahoo list, MEActionUK, where the list owner has the initials SR and has other moderators helping him. SR also runs a website MEActionUK which has a lot of informaton. I offered before (can't remember when - maybe 1-2 years ago) to give SR money towards things like web-hosting but he didn't want to take it. So no particular person or individual to give it to or even looking for it there, as far as I know.

Margart Williams and Malcolm Hoopers articles tend to be put on the MEActionUK website. But there is no organisation as such. There is an organisation Action for ME but that's the largest ME charity and its views are very different to Malcolm Hooper and Margaret Williams.

 

[justinreilly]

There's not really an organisation called MEActionUK. There is an active yahoo list, MEActionUK, where the list owner has the initials SR and has other moderators helping him. SR also runs a website MEActionUK which has a lot of informaton. I offered before (can't remember when - maybe 1-2 years ago) to give SR money towards things like web-hosting but he didn't want to take it. So no particular person or individual to give it to or even looking for it there, as far as I know.

Margart Williams and Malcolm Hoopers articles tend to be put on the MEActionUK website. But there is no organisation as such. There is an organisation Action for ME but that's the largest ME charity and its views are very different to Malcolm Hooper and Margaret Williams.

So he and Margaret Williams are just kind of on their own as individuals volunteering? I wonder if he'll 'retire' soon from this volunteer work; that will be a sad day for us. Does he accept donations? I guess I'd have to ask him. Maybe contributing some money to his 'operation' would allow him to hire someone part time or something to help him out with this as they seem to do an incredible amount of high quality work and it must be quite taxing.

Hooper and Williams amaze me. I could never hold anyone to his standard, but the example of this two-volunteer team illustrates that CAA could improve their non-research efforts substantially with reasonable cost- stuff like changing things on the website and producing more strongly worded docs that they're going to turn out anyway.

 

[Roy S]

I would also like Mary Schweitzer on the CAA board, but I seriously doubt that will happen. I don't know how much one person could do anyway. She wrote some pointed posts on the cfsknowledgecenter thread that is the equivalent to this one, as did I and others. You'll notice some people there do not post here. I'd suggest reading the comments in chronological order; the brilliant people at ning.com arbitrarily reversed the order as "an improvement".

http://cfsknowledgecenter.ning.com/...com_blogpost&id=2477197:BlogPost:29711&page=1

(unrelated) islandfinn wrote:
"I am going to read your article now."
Uh oh folks. I think I killed her. Bored to death- what a way to go. I'm sure gonna miss those legs

 

[Dolphin]

So he and Margaret Williams are just kind of on their own as individuals volunteering? I wonder if he'll 'retire' soon from this volunteer work; that will be a sad day for us. Does he accept donations? I guess I'd have to ask him. Maybe contributing some money to his 'operation' would allow him to hire someone part time or something to help him out with this as they seem to do an incredible amount of high quality work and it must be quite taxing.

Hooper and Williams amaze me. I could never hold anyone to his standard, but the example of this two-volunteer team illustrates that CAA could improve their non-research efforts substantially with reasonable cost- stuff like changing things on the website and producing more strongly worded docs that they're going to turn out anyway.

Yes, they're volunteers. MW is a patient. I think MW has more input into the documents than MH. No harm in asking them about money I suppose.

 

[fred]

There are doubts in some quarters that the UK is such a paragon of advocacy virtue.

http://www.theoneclickgroup.co.uk/news.php?start=3360&end=3380&view=yes&id=4530#newspost

 

[Gerwyn]

So he and Margaret Williams are just kind of on their own as individuals volunteering? I wonder if he'll 'retire' soon from this volunteer work; that will be a sad day for us. Does he accept donations? I guess I'd have to ask him. Maybe contributing some money to his 'operation' would allow him to hire someone part time or something to help him out with this as they seem to do an incredible amount of high quality work and it must be quite taxing.

Hooper and Williams amaze me. I could never hold anyone to his standard, but the example of this two-volunteer team illustrates that CAA could improve their non-research efforts substantially with reasonable cost- stuff like changing things on the website and producing more strongly worded docs that they're going to turn out anyway.

they are both more closely associated with invest in me.action for ME have close aasociations with the Uk government

 

[fred]

they are both more closely associated with invest in me.action for ME have close aasociations with the Uk government

Are they not most closely associated with ME Action UK? Prof Hooper speaks at IiME conferences but I had not heard that 'Margaret Williams' is directly involved with this charity.

 

[starryeyes]

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

Lily, the CAA is directly responsible for miseducating our doctors about CFS which has harmed a lot of patients. Some of the patients' horror stories are right here on this forum. Children are being forced out of their homes and taken away from their families for until they reach adulthood. That's what I'm saying is damaging.

 

[starryeyes]

and tee - can you see some of the positive changes the CAA has made in the past year?

I've stated many times that I like what they're doing in research and in creating a Biobank and I was quite happy that they took down the article we were all protesting earlier this year.

 

[Mithriel]

There are doubts in some quarters that the UK is such a paragon of advocacy virtue.

http://www.theoneclickgroup.co.uk/news.php?start=3360&end=3380&view=yes&id=4530#newspost

Fred, there is a whole history there, not everything you read on the web is true.

Mithriel

 

[fred]

Fred, there is a whole history there, not everything you read on the web is true.

Mithriel

And there are usually two sides to most stories which is why it useful to be aware of the available evidence, notwithstanding one's belief in it or otherwise.