Caa poll

Someone emailed me to ask where CAA said "XMRV is not related to ME, case closed" as I put it. They didn't literally say that in 'the iteration of X' (whatever that's supposed to mean). It was just my summarizing of the tone I felt they were strongly trying to put across.

It seems to me they are deliberately not saying those words, so they can't be accused of saying that, while saying lots of "wrapping it all up and moving on" type talk to give the feeling that it's all done and we need to move on now. like someone got fired (WPI and XMRV) and the boss is saying "well they failed, but we learned a lot from their mistakes and we wish them well in their leaving to pursue other opportunities."

That may seem like reading too much into it to some, but I really feel that way, so I'm saying it.

I don't like CAA, but I don't think it helps our cause to put things up in quotes that they didn't say, based on an idea that maybe they think it.

OTOH, I'd like to take this opportunity to appeal to the board to remove K. Kimberly McCleary as the Association's president & chief executive officer. I think enough reasons have been stated in threads here. And I realize some accusations have not been supported, but there are others that have. So I think it's time you started a search for a replacement. I'm not asking for a radical who never questions new research, but I would like someone who is committed to doing right by patients.

Think about it. What is a board supposed to do? Just simply be yes-men for the boss, or to do what's best for the people the organization is supposed to represent. Why not show patients you are willing to do your jobs by searching for new candidates. And it's not that I don't realize you have limited energy. But I think you can see that as the years go by, your membership dwindles and more and more patients speak out against you.

I agree. I thought my use of the word 'attitude' indicated that it was not a quote. This is what I said:
'CAA's attitude of "XMRV is not related to ME, case closed" is absolutely unacceptable.'

I have added the following to clarify:
'(this is not a quote, but my perception of their attitude in the last CAA email article "Iterations of X").'

I'm hoping that the fact they didn't get any money in the second round, despite WPI endorsing them, sends a strong message to CAA that the current management must go! But I'm not counting on it.

Someone forwarded me an email from CAA board member Amy Devine asking people to vote for CAA. No mention of WPI. I am disappointed as usual by CAA's failure to get fully behind WPI.

I think all this situation with CAA is really bad for both sides. We, the patients are losing so much because of this conflict. CAA wasnt successful with advocacy but will we give them chance to show us if they are competent in research area?
I dont know if there was already some kind of talks with CAA but if not I would propose to make a public meeting between CAA and patients community to talk to them where is a problem and what we expect from them. Their budget is more than 1 mil. USD, CAA has a lot of supporters. Except WPI which organisation has more money? So I think its in interest of both sides to find a good solution. A lot of people say that we just lost 40 000 USD in Chase community giving because of this fight but I think we are losing much more......

Tuha, there have been attempts by patients to discuss the situation with CAA ad naseum. They have a huge amount of written criticism from patients so they know what changes patients want. They don't want to listen.

Here's a thread on CAA with 1700 posts:
http://forums.phoenixrising.me/show...-Talk.-How-s-the-CAA-doing&highlight=talk CAA

I think the CAA got out of the patient advocacy business because of all the criticism they received. And maybe they figured that focusing on research would fix things. But McCleary has caused so many problems, I think anything short of replacing her will not allow differences to heal. I think it might also be necessary to replace Vernon, because she seems to be part of the McCleary approach to things.

Leaving aside other problems, they don't need all the ridiculous overhead McCleary, Vernon and the CFO drain out with their huge salaries to manage a tiny research granting fund. This could even be done with volunteers and say $100K in overhead (inc salaries).

There has recently been a proliferation of five-star reviews of CAA on guidestar.com. These reviews say patients should stop saying bad things about CAA because we are only hurting ourselves; how great Kim McCleary and Vernon are and that they are our only hope and their advocacy is so great!

Everyone, PLEASE put up a review saying what you feel about CAA. Let them know what PR patients think of CAA. A couple of sentences is all it takes to have an impact. Click on the 'write review' tab on the left side of the page:

http://www2.guidestar.org/organizations/56-1683450/cfids-association.aspx

Thank you!

Well, that was fun, Justin. I had already written a CAA review on Guidestar, and thought I could not write another, but I was mistaken.

I am fairly sure that the CAA inner circle have been blowing their own trumpet with those five star reviews.

So CAA is still billing itself as 'patient advocates' and 'a patient group.' They also really should change their name since they do not have members, only donors, the vast majority of patients polled oppose them and the fact that they have declared they are out of the advocacy business.

Today's Science magazine article:
"Even disease advocates who welcome the attention XMRV has brought to CFS believe the time has come to put this line of research to rest. It's hard to say that this has not received a fair appraisal, says Kimberly McCleary, president of the CFIDS Association of America, a patient group in Charlotte, North Carolina.


Today's Washington Post article:
"Advocates for patients with the syndrome were disappointed.

We share the deep disappointment of many CFS patients and scientists that the initial data did not hold up. Whether you have been diagnosed recently or have been ill for decades, this news comes as a blow to hope for rapid advances in the care available to CFS patients, said Kim McCleary of the CFIDS Association of American in a statement."


Today's NPR article:
"And Kim McCleary, head of the CFIDS Association, an advocacy group for people with chronic fatigue syndrome, says it's time to look for something else."


Today's WebMD article:
"Patient advocates say it's time to refocus research efforts on credible science.

We share the deep disappointment of many CFS patients and scientists that the initial data did not hold up. Whether you have been diagnosed recently or have been ill for decades, this news comes as a blow to hope for rapid advances in the care available to CFS patients, says Kim McCleary, president & CEO of the CFIDS Association of America, in a prepared statement."

We've continued to see comments in newspaper articles from Kim McCleary, taken from the CAA website and also from emails from Kim to media outlets.

Here's an interview of Dr. Vernon in the Saturday Evening Post, 10/24/11:
http://www.saturdayeveningpost.com/2011/10/24/wellness/medical-mailbox/cfs.html

I'm surprised to say that most of this article isn't bad. However, the Headline and last things people read are usually what people take away and this is what they will take away:

"Conquering Fatigue" and "Many people with CFS don't have a psychiatric disorder."

Also the false impression that the 'scientific community' is all over the "CFS" problem.

Plus, what about the fact that CAA is now "laser-focused" only on research and not being in the media. I guess that's not true. In fact Vernon is now saying they are 'laser-focused' on making "CFS" "widely understood", among other things. I guess doing interviews with the media is part of making "CFS" 'widely understood." : (

Just listened to excellent patient testimony at CFSAC, including that by Jennifer Spotila, CAA board member. Thank you, Jennifer! I agree 100% with everything you said... except, you validly lambast CFSAC for not ensuring HHS comply with its recommendations; you specified the recommendation that all govt agencies use the term "ME/CFS." How can you be mad at that if you and CAA only call the disease "CFS"? Why has CAA said that it will only start using anything but "CFS" after CDC does (even though NIH already uses "ME/CFS")?

Why doesn't CAA make basic free and low-cost changes that will help us and have been requested over a year ago by a number of patients such as all of the following (except re Rituxan), How about calling the disease ME? How about requiring patients in the biobank to have ICC and CCC ME? What about making it clear that while XMRV proper is dead, HGRVs may have just been born (pending further published evidence)? Why doesn't CAA work to make changes on the content of it's website info that many patients recommended here a year and more ago? Why doesn't Vernon go on national tv and call for the crime against pwME known as the Reeves Criteria to be rescinded? Perhaps the answer is that she's an author of it.

The following isn't low cost, but crucial: why not provide or raise emergency funding for a Rituximab trial? Why are the salaries of the execs still stratospheric while their performance is not?

CAA has made marginal improvement, but we need you to speed up these important and/or low-cost measures!

"Kim is good with working with Washington and getting the issues in front of politicians"

That depends on what they present as our issues. People in a position to know inform me that the CAA has acted against our interests.

I've met Kim. She struck me as a midlevel HR employee that struck gold getting a better gig. She didn't demonstrate any personal understanding of or connection to the disease, but did throw a bunch of BS about how the CAA had an 'innovative research model bridging the financial dead zone' etc etc. This is not someone I would allow, much less pay, to represent me to Congress.
There are plenty of people who are worth $150K + perks. McCleary is not one of them.

--- whoops, I just saw that the last entry is from 2011. Don't know how I stumbled across this thread.