Caa poll

[justinreilly]

This excerpt about McCleary saying to the govt that she's "resisting" pressure from patients to recommend banning blood donation from pwME made me absolutely sick! Really, she's at war with us, just like CDC:

http://oslersweb.com/blog.htm?post=774136

Here’s an example of how McCleary uses her inside voice, which comes from an April 9, 2010 e-mail McCleary sent to government officials:

“I’ve noted online that several European CFS/ME patient organizations are preparing to petition their governments to follow Health Canada’s lead. So far we are resisting pressures to do likewise, with expectation of a report on the blood safety study (NHLBI, BSRI, CDC, FDA, etc.) to come, hopefully in time for the May 10 DHHS CFS Advisory Committee meeting.” (Italics mine)

If the chair of the self-styled largest patient advocacy organization in the U.S. is alerting government administrators that she is “resisting pressure” to urge a ban on CFS blood donations even despite the urging of concerned patients and in-the-know scientists, for any reason at all, then perhaps it’s unsurprising there continues to be no clear federal policy in the U.S., even now, on such donations.

These are not pressure tactics, this is not advocacy. This is big time suck up. It’s not about you and it certainly isn’t preventing "chronic fatigue syndrome."

Herewith, the Cliff notes on CAA for newbies:

1) Twenty years ago, CAA unplugged the original retroviral work in this field when it abruptly stopped funding Wistar Institute scientist Elaine DeFreitas.

2) In 1998, they functioned as co-conspirators with CDC’s Bill Reeves by overlooking his year’s long involvement in the CFS slush fund. With the help of North Carolina’s right-wing battle ax Sen. Strom Thurmond, CAA arranged for Reeves’ federal whistleblower status—which protected him from prosecution and from being fired. And then McCleary presented Reeves as a hero to patients.

3) And that’s how Reeves was cemented into the post of Principal Investigator for the next twelve years. Gee, those were great years, weren’t they?

4) Once Reeves was safe, McCleary turned CAA into a CDC contractor for the next several years, accepting millions from the federal agency in exchange for facilitating the agency’s Big Mac-style marketing of “chronic fatigue syndrome.”

5) On the public front, McCleary served as moderator of the CDC's surreal national press conference of 2006, wherein Reeves and Vernon bamboozled the ever-gullible press about genomics and childhood molestation in their formal roll-out of The Cause.

 

[Mark]

This excerpt about McCleary saying to the govt that she's "resisting" pressure from patients to recommend banning blood donation from pwME made me absolutely sick!

OH. MY. GOD.

Now she must resist pressure from patients for her to go, and go now.

Patients paid her handsomely to do all this, I am not surprised you feel sick.

Whatever the situation on XMRV, the blood donation ban was long overdue anyway! It has always been a sensible precaution irrespective of XMRV! So why on earth resist the patients' campaigning? She could at the very least have said this is a good idea anyway even though she doesn't believe in XMRV, and taken the opportunity that XMRV presented: XMRV highlighted the potential dangers of ignoring and trivialising ME/CFS. Not taking that opportunity indicates - even apart from everything else - that she simply hasn't been acting in our interests.

I just checked out the latest standings on the poll, it is not even slightly ambiguous. I can't remember a poll with so many responses so fast and with such an extreme unanimity of opinion, and we are a diverse forum but founded by somebody who has strongly defended the CAA's research programme - yet still we are all now calling for a change of leadership! This feels to me like the end of the CAA.

She has to go now.

Would the last person to leave the CAA please turn out the lights?

 

[justinreilly]

Whatever the situation on XMRV, the blood donation ban was long overdue anyway! It has always been a sensible precaution irrespective of XMRV! So why on earth resist the patients' campaigning? She could at the very least have said this is a good idea anyway even though she doesn't believe in XMRV, and taken the opportunity that XMRV presented: XMRV highlighted the potential dangers of ignoring and trivialising ME/CFS. Not taking that opportunity indicates - even apart from everything else - that she simply hasn't been acting in our interests.

I just checked out the latest standings on the poll, it is not even slightly ambiguous. I can't remember a poll with so many responses so fast and with such an extreme unanimity of opinion, and we are a diverse forum but founded by somebody who has strongly defended the CAA's research programme - yet still we are all now calling for a change of leadership! This feels to me like the end of the CAA.

She has to go now.

Right, even without XMRV, there are still all of the viral infections people have a lot of, including some unknown i'm sure. plus it's extremely likely there is some viral cause. and giving blood triggers PEM making the patient sicker.

There is no other reasonable explanation for this other than McCleary is trying to keep up the appearance created by CDC and the insurance industry that ME is not a serious or contagious disease. She works for CDC or the insurance industry, not us, the extremely sick, from whom she has taken a huge amount of money.

Who are the big donors to CAA? CAA won't tell us. I bet they are insurance companies. If she gets a job at cdc or an insurance company after she has to leave CAA, it will all make sense.

 

[justinreilly]

I'd like to know from CAA if they have any donors that could possibly be construed as having a conflict of interest in anyway. Including with the stated mission and goals of CAA as well as the broader interests of pwME.

 

[leaves]

What are the next steps?
- pressure board
- petition by major ME organizations And pAtients
- press conference
- legal action
??
What's the plan??
From the middle east we learn power doesn't let go: it has to be taken.
We have to be very clear with our demands. If they don't give in we have to give a press conference that we en masse do not support this organization no longer. It would be helpful if there would then be an alternative organization that we can give our support too: we need to have a good alternative to maximize our bargaining power.

 

[cigana]

This is unbelievable, I mean absolutely unbelievable. She has to go and we have to know who the big donors are. I will suggest that if they attempt to defer from publishing the names of donors then they are doing that for a reason and the reason would be a conflict of interests.

Mark

 

[CBS]

What are the next steps?
- pressure board
- petition by major ME organizations And pAtients
- press conference
- legal action
??
What's the plan??
From the middle east we learn power doesn't let go: it has to be taken.
We have to be very clear with our demands. If they don't give in we have to give a press conference that we en masse do not support this organization no longer. It would be helpful if there would then be an alternative organization that we can give our support too: we need to have a good alternative to maximize our bargaining power.

Contact the individual investigators that the CAA supports and tell them you can no longer support the CAA but that you value their research and want to contribute directly. Create a list of alternative ways to support the research you value. Then point the researchers to this thread.

 

[justinreilly]

Contact the individual investigators that the CAA supports and tell them you can no longer support the CAA but that you value their research and want to contribute directly. Create a list of alternative ways to support the research you value. Then point the researchers to this thread.

That's a great idea.

Someone mentioned on mecfsforums that a protest could be a good idea. Not sure that there's anyone in charlotte we could contact. caa, cheney and lapp are there so they probably have a strong patient community.

perhaps a press conference would be take less energy, but yes, it would be nice to have another patient advocacy org we can totally endorse. I haven't seen enough of PANDORA for me to fully back them yet in that way.

 

[CBS]

I wonder if it would be possible to create a clearinghouse for donations to ME research where patients could review a wide range of ongoing research and donate directly, bypassing the CAA (or any other organization that you may be uncomfortable with) as a way of putting pressure on them to be responsive to the patient community or face insolvency.

Maybe all it would take is a web-page with instructions and links for direct donations to the researchers themselves. Sort of like "conflict free diamonds" or a "green stock portfolio." It's not an ideal situation but it might lead to an advocacy group stepping up. I believe that there is some significant measure of untapped/pent up patient support that is being held back by qualms about how various groups are being managed.

 

[leaves]

We could also have newspaper adds where we say that we no longer support caa, but some other organization.

 

[Andrew]

I'd really like to know how members could vote in a different leader. All the times I've asked about this, the responses I got seemed to say the top level is perpetuated by cronyism, and there is nothing members can do.

Maybe the CAA could tell us what the process would be to accomplish a change in leadership. This is a perfectly reasonable question of a non-profit, and I'd like to hear the answer.

 

[Otis]

I wonder if it would be possible to create a clearinghouse for donations to ME research where patients could review a wide range of ongoing research and donate directly, bypassing the CAA (or any other organization that you may be uncomfortable with) as a way of putting pressure on them to be responsive to the patient community or face insolvency.

Maybe all it would take is a web-page with instructions and links for direct donations to the researchers themselves. Sort of like "conflict free diamonds" or a "green stock portfolio." It's not an ideal situation but it might lead to an advocacy group stepping up. I believe that there is some significant measure of untapped/pent up patient support that is being held back by qualms about how various groups are being managed.

Shane,

If someone can compile a list complete with descriptions and links I'll turn it into a web page.

Otis (he says while he's tired and wired before the payback arrives )

 

[Dreambirdie]

Hey Otis! That will be quite a task... maybe remind yourself you can take as long as you need to.

Like eating an elephant, you know, just one bite at a time... not that I would eat an elephant, but you know what I mean. :Retro tongue::Retro tongue:

 

[justinreilly]

CBS and OTIS:

That's a great idea! Please do it if you are able.

I'd really like to know how members could vote in a different leader. All the times I've asked about this, the responses I got seemed to say the top level is perpetuated by cronyism, and there is nothing members can do.

Maybe the CAA could tell us what the process would be to accomplish a change in leadership. This is a perfectly reasonable question of a non-profit, and I'd like to hear the answer.

The Board is at the top of the org. They are self-perpetuating- the board as a whole chooses new members when a board member leaves. Noone else including donors and 'members' has any say. The board hires and fires the CEO and other officers and tells them, broadly, what to do. Unfortunately it seems our CEO has hypnotized the board so they won't do what's best for the org or patients. and noone else can do anything about it directly. what we can do is persuade people not to donate and that they do not represent us. Not the best or most democratic set-up, exactly how they want it.

so what i think will happen is that either they will make a turn around, die quickly or straggle along. If it is the latter, ie if caa can exist with 95% of patients (according to the poll at least) totally against it, i think it will be clear that some people or group that wants us sick (ie insurers) is funding caa.

 

[CBS]

hey otis! That will be quite a task... Maybe remind yourself you can take as long as you need to.

Like eating an elephant, you know, just one bite at a time... Not that i would eat an elephant, :retro eek: But you know what i mean. :retro tongue::retro tongue:

db, my thoughts, exactly!

 

[Otis]

Somebody just has to put that bad boy on my plate so I can start chewing.

I can take the content and get it to the web it - but I can't compile it too.

 

[Dreambirdie]

Somebody just has to put that bad boy on my plate so I can start chewing.

Here he is... just what you asked for!

 

[Hope123]

You can't eat Dreambirdie's elephant........he's adorable and so enjoying the water! Get another elephant!

 

[Dr. Yes]

Assuming that it is even possible to pressure the board to remove Kim McCleary, how do we know that they won't replace her with someone equally inadequate, or worse? We don't know much about the board, and it's quite possible that it largely shares McCleary's agendas. I'm also not comfortable with Suzanne Vernon as their science director; would a new CEO necessarily hire a new science director?

I'd like to know from CAA if they have any donors that could possibly be construed as having a conflict of interest in anyway. Including with the stated mission and goals of CAA as well as the broader interests of pwME.

I think that would be a fair question. For example, any health insurance/ industry interests, including organizations or individuals with ties to those interests, would constitute potential conflicts of interest. However, in order to really assess whether any such conflicts exist, the donor names would have to be made public to allow for independent investigation.

Also, I'd like to know if it's true that the CAA is phasing out its role as an advocacy organization, because that it not consistent with any of their public statements, nor their actions, nor anything on their website. Two PR members have mentioned that they were told this by CAA representatives, but then Jennie Spotila seemed upset that these comments had been made public by anyone but a CAA rep.. yet she did not really clarify whether that information was accurate or not. If the CAA is really becoming a research-based nonprofit, are they going to stop commenting to the media about anything but their own research? Are they going to stop distributing pamphlets and addressing issue on their website that have no relevance to science (such as discussion of treatments, including CBT/GET)?

We could also have newspaper adds where we say that we no longer support caa, but some other organization.

Except I'm really not sure there is such an organization of sufficient scope in the U.S.. I wish we had the equivalent of Invest in ME or something over here..

 

[garcia]

Also, I'd like to know if it's true that the CAA is phasing out its role as an advocacy organization, because that it not consistent with any of their public statements, nor their actions, nor anything on their website. Two PR members have mentioned that they were told this by CAA representatives, but then Jennie Spotila seemed upset that these comments had been made public by anyone but a CAA rep.. yet she did not really clarify whether that information was accurate or not.

Doc, I find this news extremely worrying. If the CAA is leaving the advocacy arena, I see it as a sign of utter contempt towards patients. Are they not supposed to be an advocacy organization first and foremost? Was this not the primary aim for their founding, to represent the interests of patients?

I really see this as an attempt by the McCleary / Vernon cabal to retain control of the organization, stop patients having a say, and most importantly hang on to the $180,000 annual salary that McCleary gets.