Caa poll

[WillowJ]

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)

The problem with this is that CAA talks to reporters. They do not stick to what they are good at, such as funding the Lights (which is great).

Instead they go out there and say crazy things like defending the use of Oxford [what, they'd never heard of Holmes or Ramsay?], spinal tap is not a nice thing so imply it may not be useful in ME/CFS, saying the problem with the CBT/GET study is that this type of therapy is not available in America (not that that there was a high incidence of refusal and dropouts, that the inclusion criteria was invalid for CFS [actually what we call CF in America], that the effect was insignificant and given who the authors were that this was likely to be due to brainwashing rather than actual improvement, and most importantly that this is not an appropriate use of funds because all diseases show similar response to CBT in studies but what's really needed is to better understand the biomedical causes and this needs serious research and funding). And get Reeves whistleblower protection, etc.

 

[Ernie]

Susanne Vernon and Kim McKleary both know what they are guilty of. Everyone else is just figuring it out.

 

[Cort]

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.

I don't think you can have it both ways. .....Do researchers have bank accounts in which you can funnel money into their research? I doubt it...and its not going to happen anyway. People are not going to take the trouble to contact individual researchers and give them money. If you're going to decide to stop supporting the CAA because of their advocacy problems then you're going to pull the plug on their research efforts as well....

You've essentially decided that their inadequate advocacy outweighs any impact their research might bring.....If that works for you -and my guess is it works for most people -then that's fine but lets not suggest its anything other than what it is.

I support the Research Network and the Biobank because I believe that, outside of XMRV, they have more potential to impact my life than any other CFS research effort that I know of. I love the research....I read it avidly and its what moves me the most and that's why I stick with the CAA despite all these other problems. I'm really so tired of them kicking themselves and that project in the teeth. I wish they could just get out of their own way.

 

[jace]

I don't think you can have it both ways. .....Do researchers have bank accounts in which you can funnel money into their research?

The WPI do! Join Count Me In, and give what you can afford, from a single dollar up, next month on the 20th. Don't worry, people, I'll remind you

ETA For those that want to do something now for the WPI, Andrew has a new matching fund, which will double your money if you are quick http://forums.aboutmecfs.org/showthread.php?10294-WPI-Matching-Fund-2-27-2011-3-31-2011

 

[CBS]

I don't think you can have it both ways. .....Do researchers have bank accounts in which you can funnel money into their research? I doubt it...and its not going to happen anyway. People are not going to take the trouble to contact individual researchers and give them money. If you're going to decide to stop supporting the CAA because of their advocacy problems then you're going to pull the plug on their research efforts as well....

You've essentially decided that their inadequate advocacy outweighs any impact their research might bring.....If that works for you -and my guess is it works for most people -then that's fine but lets not suggest its anything other than what it is.

I support the Research Network and the Biobank because I believe that, outside of XMRV, they have more potential to impact my life than any other CFS research effort that I know of. I love the research....I read it avidly and its what moves me the most and that's why I stick with the CAA despite all these other problems. I'm really so tired of them kicking themselves and that project in the teeth. I wish they could just get out of their own way.

I don't think you're in a position to question my support of the researchers who are getting seed money from the CAA. As for having a negative impact on the amount of money being donated to research, I'm afraid that the CAA is their own worst enemy, specifically when it comes to getting donations from the patient community. If it works for you to disregard the patient communities deep concerns about the CAA, that's fine but lets not suggest that that is anything other than what the CAA is doing.

As for getting money for researchers via a conduit other than the CAA, I'll simply say that you just might be surprised in a few days.

 

[CBS]

The CAA is hiding behind the "don't hurt the research" argument up as their only defense like a negligent parent holding the baby over their heads while in a stand off with the Department of Family/Child Protective Services.

 

[toddm1960]

Changing leadership will not change the direction of this or any other corparate group. Direction and goals (stated or unstated) will be set by funding, who's giving millions to this group. Research will then be taylored to fit the goal of whomever is funding them, so I don't think we need to be worried about losing any current research coming from them. It's been said a few times on this thread.....follow the money......I think all of our energy needs to go into who's supporting this group. My guess is we'll be able to predict the results of all of their reaseach based on this.

 

[SallyQ]

Have to change drastically to even advocate for us. They remain in the dark.

 

[silicon]

It's too bad that WikiLeaks never focused on CAA donors!

I wonder how many people are privy to the information about large CAA donors, and whether they would be amenable to commenting about it...I can't imagine that the CAA itself would ever release that information voluntarily (I would expect that such large donors want their identity safeguarded at all costs).

Follow the money, and the rationale for the CAA's behavior may become more clear.

 

[harley]

After watching for a long time and becoming educated, I thought I'd finally add my two cents worth. This is what I see:

1) The CAA does not appear to be in very good financial shape, according to Guidestar's 2009 990. Their funds are dropping year after year.

2) It is a small organization. Is this all there is to show after twenty-something years?

3) They have chosen to focus on research because that is one of the few avenues left open to them where they have not run into a dead end.

4) The dead ends are complicated, but at least partly of their own making. The present is shaped by the past, as someone said. They are unlikely to acknowledge any responsibility for failure. Instead, they will pat themselves on the back.

5) They failed at advocacy--the funds for CFS research are pathetic, and we still have to deal with the CDC homepage.

5) They failed at defining the disease. We still have to deal with the GET and psychiatric labels and with the lack of Canadian criteria.

6) They failed at being a membership organization. In fact, it seems they have no interest in being accountable to patients.

7) They are playing footsie with the federal government. The experience with the CDC taught them nothing.

8) Even thought they have failed to get substantial funds from the government, hope springs eternal.

9) Getting more money for their research is more important than advocating for the patients. They are in a compromised position, which limits their ability to be effective advocates.

10) They are competitive with the WPI and other research organizations, which complicates their ability to lead and coordinate.

11) They are not national, regional or local, nor are they an association.

12) The CAA board seems to have an irrationally high regard for their leaders.

13) The CAA doesn't seem competent to lead the advocacy efforts that are so desperately required. Since the announcement of the XMRV discovery, what they have FAILED to do is far more consequential than anything they have done.

14) They want the authority but they don't want the responsibility that comes with it, nor are they interested in being accountable to anyone but themselves.

15) Anyone who expects them to change is foolish. What you can expect is to get dizzy from the spinning.

 

[justinreilly]

harley, good summary. Good point that they are not an association, they're a loose canon.

Don't know if we can find out who the donors are. i think it would prob take a lawsuit (but could be wrong), which isn't a good option, imo.

 

[harley]

harley, good summary. Good point that they are not an association, they're a loose canon.

Don't know if we can find out who the donors are. i think it would prob take a lawsuit (but could be wrong), which isn't a good option, imo.

I don't think they are required to make that information public, and as the CAA is not very transparent, I don't think we'll ever know. It is a shame that it necessary to ask in the first place, or that they would feel the need to hide that information.

Personally, I would be curious as to whether any drug companies or agencies are giving them money and if so, whether those companies have access to the Biobank. That isn't necessarily a bad thing at all, but it is the sort of information that, in my opinion, should be disclosed to patient blood donors if it is the case.

 

[justinreilly]

Dr. Vernon Spoke Out Against Us in the Media, Why Doesn't She Speak Out For Us Now?

I am reposting from my comments to Cort's "Guilty" Article.

Dr. Yes found this gem:

Michelle Akers believes that her CFS resulted in part from emotional problems in her childhood. “Let’s just say I had some difficult family challenges to work through” is how she puts it. Most CFS researchers wouldn’t argue with her assessment. “Early life adverse events—abuse, neglect, long-term malnutrition—can really mess us up and change the architecture of the brain,” says the CDC’s Vernon.

[emphasis added]
:headache::headache::Retro mad::Retro mad::Retro mad::Retro mad::headache::headache::Retro mad:

(http://www.maryafischer.com/oprahmagazine1.html)

Dr. Yes said:

That comment seems to reflect a perspective drawn from some of the worst 'research' to come out of the CDC, namely the attempt to connect CFS to a history of childhood abuse.

In the quote in bold above, Dr. Vernon was promoting a view, derived from the most scientifically bankrupt CDC research, that CFS may be related to early life abuse and neglect. That raises some serious questions, such as:

-Has Dr. Vernon changed her mind about that research since 2006, or does she still think it's valid?

-As a scientist, how could she ever have evaluated the experimental design and conclusions of the CDC's child abuse-CFS studies and still agree with them?

I entirely agree. This is very serious and shows she has spoken to the media in support of the CDC lies which were based on the Reeves definition. I have criticized her before saying that since she was a co-author on the paper, the Reeves criteria are one of the weapons most used to oppress us and that she works for CAA now, she needs to actively speak in the media about this travesty.

Some said, well, maybe she should in a way, but she is a scientist and maybe she feels uncomfortable speaking in the media. OK, so now with this evidence that she is comfortable speaking in the media against us with knowing misrepresentations as a government scientist, why isn't she speaking for us as our paid representative, exposing the Reeves criteria and demanding they be scrapped?

Posted by Cort:

This is what I was talking about -looking at a body of work ...and yes, what Dr. Vernon said is right; I was chagrined to find out that similar studies have been positive in FM and IBS (we are not alone) and there may be a portion of the population that they apply to....

[emphasis added]

Dr. Vernon was right? She was promoting a study done by CDC with the Reeves criteria. You can't extend that conclusion from Reeves criteria tired people to actual ME patients. Invalid definition = invalid study. Period.

 

[harley]

I entirely agree. This is very serious and shows she has spoken to the media in support of the CDC lies which were based on the Reeves definition. I have criticized her before saying that since she was a co-author on the paper, the Reeves criteria are one of the weapons most used to oppress us and that she works for CAA now, she needs to actively speak in the media about this travesty.

Some said, well, maybe she should in a way, but she is a scientist and maybe she feels uncomfortable speaking in the media. OK, so now with this evidence that she is comfortable speaking in the media against us with knowing misrepresentations as a government scientist, why isn't she speaking for us as our paid representative, exposing the Reeves criteria and demanding they be scrapped?

I agree. Has she ever disavowed that statement? I imagine her previously close relationship with Reeves and co-workers has made it difficult for her to be too critical. Reeves refined his research skills while working with prostitutes who were required to show up for "smears" on a regular basis. A short leap to CFSers from there!

 

[harley]

For further reading on the subject of Reeves and his work with prostitutes, please see: http://www.jstor.org/pss/30123050

 

[Andrew]

To echo a sentiment posted earlier, it is not good to contact news agencies and tell them CAA does not speak for us. It makes us look bad. Instead, tell them who does speak for us. The negative approach almost always backfires.

I think in many ways McCleary is shooting herself in the foot. She has received enough feedback to understand what is wrong with her style of presentation, but she chooses to do nothing about it.

Here is a press release from the IACFSME, who by nature of being an organization of academics, scientists, and health practitioners is expected to release low-key statements. Yet their release is powerful when compared to what McCleary does.

 

[Dreambirdie]

To echo a sentiment posted earlier, it is not good to contact news agencies and tell them CAA does not speak for us. It makes us look bad. Instead, tell them who does speak for us. The negative approach almost always backfires.

I agree. I think Mindy Kitei would be a great spokesperson.

The WPI also. Why don't they speak up more publicly on our behalf?

 

[WillowTree]

Originally Posted by Andrew
To echo a sentiment posted earlier, it is not good to contact news agencies and tell them CAA does not speak for us. It makes us look bad. Instead, tell them who does speak for us. The negative approach almost always backfires.

I also agree. So far, from what I have seen, I have been impressed with the work and the press releases issued by the ME/CFS Worldwide Patient Alliance. They do have a place on their website where the media can contact them. This may be another organization to which we can direct the media.

 

[Ernie]

Follow the money, and the rationale for the CAA's behavior may become more clear.

The truth always ends up coming out. It's only a matter of time.

 

[leaves]

I agree Andrew: I won't sign the petition for that reason.