CAA is Listening

[eric_s]

The CAA is quite a large organisation compared to the other ones and i think that's a good thing. I even wish it would be much larger. I also like that it has a serious, competent and professional appearance (the website etc.) and seems to be well connected (part of the XMRV Blood Working Group, for example).

Kim McCleary is healthy and well paid. I don't mind the 180'000 or how much it is, if her work is worth it. Give her 300'000 if she can get us a treatment in a reasonable time. But from a healthy person that is not a volunteer we can demand good results. And this is not convincing to me.

 

[safari]

Unfortunately, we have neither the time nor expertise to engage on [the ICD-10-CM plans to move CFS to R53: Malaise and fatigue]. We have no clinicians on staff, and no expertise in making the case for how diagnostic codes will have a negative impact on reimbursement. The IACFS/ME or CFSAC might be in a better position with the right expertise.

Jennie,
This is the BEST you can do as an advocacy organization? This is the best you can DO?

 

[justinreilly]

I have to agree that it's hard to understand Kim McCleary's comments.
http://edition.cnn.com/2011/HEALTH/02/17/chronic.fatigue/

What does this mean? Does she want these services to be available and reimbursable in the USA? I think she should have made herself more clear.
At best it is very defensive, saying that it does not matter for USA patients as it is not something that's available there. Wheter that is a smart strategy, i don't know.
I understand an organisation like the CAA can't be very radical and wants to be mainstream, but you can't evade and hide, you have to take a position on something so central, i think. Correct me, if i'm wrong.

This was on CNN! One of the most important media outlets in the world probably. It matters what you say there. If we want to succeed, we can't fail in such a critical place.

What about this study of a Fukuda-defined cohort for example?
http://www.ncbi.nlm.nih.gov/pubmed/21234629

Right, the Spanish study was better in that it used actual people with ME!

McCleary goes further in the NPR piece (her comments are from 2:00 to 2:30)
She agrees that GET and CBT provide some benefit.

http://www.wbur.org/npr/133865482/p...e-look-best-to-treat-chronic-fatigue-syndrome

Also, see my blogpost:

http://forums.aboutmecfs.org/entry.php?809-CAA-to-CNN-amp-NPR-More-GET-and-CBT-Please!

 

[eric_s]

Here's another example how one can respond to this:

http://forums.aboutmecfs.org/showth...ercise-Helps!!&p=158168&viewfull=1#post158168

 

[justinreilly]

Conflicts of Interest

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

 

[eric_s]

There seems to be an upcoming CBS news piece about ME/CFS and the PACE trial. I hope that in case the CAA is contacted for a statement they will use that chance to represent us in a good way.

 

[cigana]

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

I would also like to see a list of conflicts of interests for donors. This is not just a request, this is something that must be done if we are to have any faith in the true objectives of the organisation. If the CAA has nothing to hide, it would not mind publishing the names of all major donors.
I would rather not receive any money from someone who is not willing to expose their identity.

Having dubious donors would certainly go a long way in explaining the CAA's attitude and total lack of seriousness/urgency.

Mark

 

[eric_s]

In the articles/comments linked to on the CAA's Facebook page there's a least some critique of the PACE trial study. Why did this not make it to the news articles where the CAA is quoted? What good is the analysis and critique if it does only reach those who mostly already know the UK approach is crap? Our problem is with the public, doctors and with government agencies and courts. So the information has to get out. CNN would have been a very good platform to get information out...

 

[CBS]

In the articles/comments linked to on the CAA's Facebook page there's a least some critique of the PACE trial study. Why did this not make it to the news articles where the CAA is quoted? What good is the analysis and critique if it does only reach those who mostly already know the UK approach is crap? Our problem is with the public, doctors and with government agencies and courts. So the information has to get out. CNN would have been a very good platform to get information out...

Kim McCleary gave the quote on 2/18 or 2/19. The CAA critiques were posted on 2/20 and 2/21 - a day late and a dollar short. I have to wonder if KM gave her comments without having read the PACE study or did her full critique begin only after the outcry from patients. Either way, her original comments are out here and they are all that most people will ever see.

 

[Hope123]

Kim McCleary gave the quote on 2/18 or 2/19. The CAA critiques were posted on 2/20 and 2/21 - a day late and a dollar short. I have to wonder if KM gave her comments without having read the PACE study or did her full critique begin only after the outcry from patients. Either way, her original comments are out here and they are all that most people will ever see.

I agree with CBS. Initially I asked them to respond and got the impression that they would not be issuing a statement. Later on, when the statement was released, I urged them to get it out to the media as much as possible. I still hope they do this although as my brother says, 'No one reads the correction or addendum on page A16 or Section C of the paper."

 

[WillowJ]

I've been gone and I come back to find no answer from CAA.

Why not? There has been a full work week since some important questions have been asked. These are not light matters.

Please call a meeting and answer us.

We want to know:

1) why CAA feels comptetent to comment on treatment but not coding, or what you're going to do about the ICD-10-CM

2) whether CAA plans to (a) institute an immediate plan to timely say something useful and forceful about CBT/GET trials such as the PACE trial--and do all in your power to correct the statments currently, or whether you will (b) instead defer reporters' questions to someone who will say something timely which is useful and forceful (such as Dr. Lenny Jason, some of us, one of the other advocacy orgs...)

3) Whether McCleary is going to (a) get in harmony with the patient community or (b) be replaced (and without any input by her, in choosing her successor)

4) List of major donors

others feel free to carry on with the list if I missed something

 

[justinreilly]

According to John Herd:

[CAA] have reportedly been very aggressively speaking and acting behind the scenes to blackball WPI from meetings, government committees and grant funding.

http://johnherd.wordpress.com/2011/03/01/the-transforming-faces-of-the-cfids-association-of-america/

Any light you can shed on this?

 

[WillowJ]

Jennie, I understand now that the delay was probably because you are caring for your mother. I wish her the best.

I see that you mentioned a diversity in CAA. I believe this is so. I appreciate your PEM articles and the fact that you come and talk to us.

And I know CAA does have some good information, but there are just too many instances where the first thing said to the press is way off (even if what's later posted to the site is better), and where the info on the site is sadly lacking (like the congressional advocacy letters). I'm pretty convinced there are some other people there who either do not understand this Disease, or who cannot effectively communicate (especially not verbally). Either way, such persons should not be taking interviews from the press.
Edit: the written comments on the PACE trial are still problematic /edit

Please do bring our concerns to the board, and call a meeting if needed so the discussion can be timely. Question (2) above also refers to other issues that do come up from time to time. I understand that the reporters were prepped to answer objections, but CAA can prep, too, and should always expect to do battle at any interview. Or defer to someone with more game face. This is war. It has always been a war. Wessely school and CDC declared war decades ago, and most of NIH and the Media have joined their side (Media is starting to waffle, and we have a few defectors from NIH, but the field is still tilted in Wessely school favor). If CAA is not prepared to do battle in this war of ideas, then CAA needs to defer interview requests.

If CAA wants to participate quietly from the sidelines using inside voices, that's fine, but if this is the case, CAA needs to stick to reviewing research proposals and making written statements, and please don't take interviews. This is war, and we need interviewees who are battle-ready.

 

[toddm1960]

Sheds some light on the money trail doesn't it Justin, and it all adds up with the statements coming from CAA. One more group to sell CFS down the river, we shouldn't be surprised at this.

 

[Roy S]

CBS, I know exactly how you feel. This also goes back before Jennie was involved. It's 20 years of Kim McCleary.

 

[justinreilly]

I think Dr. Yes has raised some very salient questions in his comments to this article, starting on p.2. I too would like to hear directly from Dr. Vernon about her views on CDC, its studies and the Reeves Empirical Definition and what she is going to do to raise hell about and end the travesty of the Reeves Criteria. Disavowing it on an inside page of the CAA website is tremendously insufficient. She contributed to it. She has a moral obligation to get it undone.

http://forums.aboutmecfs.org/conten...ng-Our-Measure-of-Our-Leaders&page=2#comments

 

[justinreilly]

I'd like to hear whether CAA has decided to fire McCleary and change direction or to wind down and liquidate it's assets.

 

[justinreilly]

Ms. McCleary could learn a lot from this stud of a team-player:

http://www.youtube.com/watch?v=WYSZ8TUa3Vg&feature=related

 

[Jackofit]

CAA is Listening ... to CDC and Insurers?

I'd like to hear whether CAA has decided to fire McCleary and change direction or to wind down and liquidate it's assets.

This conversation has been going for a year and things have only gotten worse, with McCleary's damaging supportive response to PACE and Vernon's offhand dismissal of the proteomes in spinal fluid study. This is what McCleary gets $177k for? How much does Vernon get for her ridiculous comment? How much money has the CAA wasted getting nowhere over the last 20 years - I would like to hear the answer to that.

They have proved that they are not listening to us, the CAA website still looks like a copy of the CDC website and directs professionals to the CDC website, so the question about who their donors are doesn't take much guessing. There is no mention of the well-characterized and WHO recognized disease M.E. and how it suddenly became an unexplained ill-defined syndrome of chronic fatigue in 1988, most likely due to the early brain scans and immune tests showing it to be a possible AIDS-like disease, and the truth of that is now becoming very clear.

CAA remains a very secretive organization, an organization that has never represented the truth about this disease and has never represented the needs of patients. We can stop pretending that they care and demand the end of this silent arm of the CDC and ensure that they never speak for (or is that against) us again. The CAA is listening to CDC and insurers who stand to benefit financially if the cause is never found and that seems to be what CAA is aiming for in criticizing and not supporting WPI.

The bundles of money available from liquidating their assets should be given to WPI, where we don't have to question where they stand on the urgency and devastation of this pandemic, and who we can trust to use that money wisely to help us get correctly diagnosed, treated and hopefully get our lives back. WPI is listening to us and they have the research world listening and acting too, so liquidate the CAA and let's see what WPI could do with those bundles of money.

 

[justinreilly]

CAA IS HARMFUL TO ME PATIENTS

A few years ago when the Phoenix Rising thread "CAA is listening" was active (it is the longest thread in PR history with over 1,500 posts, the vast majority scathingly critical of CAA) I said that in my opinion CAA's board was clearly breaching its fiduciary duty to the organization which includes a duty to act in the best interests of society as well as ME patients and demanded the entire board resign.

As CAA got somewhat better in the past two years, I was still opposed to CAA, but no longer felt the board's conduct was so egregious that it was unlawful. However, when CAA came out in support of the IoM study (which support it has subsequently maintained), my opinion reverted back to that the board is acting unlawfully in breach of its fiduciary duty to society and ME patients.

This view has been further reinforced by Carol Head's repeated refusal (in personal email conversations) to answer my question of whether she met CCC criteria and/or had post-exertional relapse when she was sick. I can only conclude she had Idiopathic CF and met the Fukuda criteria, but not CCC. Once again, will she please answer the question?

The central problem has been managements' "capture" of the board facilitated by the fact that the board is self-perpetuating.

When Mark Iverson and two waves of board members resigned many years ago, over Kim McCleary's conduct, the remaining board apparently was not opposed to her conduct. It seems apparent to me that this must be because the remaining board members were naive, constitutionally unable to stand up for patients, were not in fact ME patients but people with Idiopathic Chronic Fatigue who met Fukuda criteria, and/or were 'captured' by McCleary ("capture" being a political science term for management effectively taking control of the board because the board must rely on management for information).

Because board members are sick, like other ME patients, it is easy for management to capture the CAA board because the board must rely so much on the information provided by, the judgment of and reassurances of management.

The fact that the board is self-perpetuating rather than elected democratically by members has served to lock in place this inappropriate deference to management.

On that PR thread a few years ago I asked Jennie Spotila why the board was not elected. She responded that the board was told by a legal or tax advisor that it was more tax advantageous to not have members who could elect the board.

That is not accurate, at least according to Nolo Press' Starting & Building a Non-Profit, March 2011. On p. 3, author Peri Pakroo, esq. outlines the only reason: "Why You Probably Don't Want Voting Members: If your members have voting rights, they can have a major say in steering your non-profit."

Perhaps the law changed before or after publication; I do not know. Will CAA please respond to me with the appropriate IRS code section or other site for this claim?

I have also posted this in two places on CAA's Facebook and emailed to CAA for distribution to all directors and the CEO. I will post here on anything I hear.