CAA on Facebook

[Kati]

Here is their comment today on Facebook:

" Privacy tip: When submitting personally identifiable health information (diagnosis, medications, etc. linked to your name and contact info), make sure the site is secure (encrypted) and has a privacy policy about how such information will be used, stored and protected"

This in my opinion was directly aimed at WPI and their online questionaire. I don't want to open a can of worm here, but why don't they deal with this issue with WPI directly instead of puting it out there on Facebook?

WPI is not for profit-
WPI deserve respect after the recent discovery
WPI is privately funded- CAA is publicly funded
WPI wants PWC to get better-

I commented on Facebook discussion that the more people getting out of the closet on how they have been treated during the course of their disease, the better it is for all of us to uncover lies, betrayals and horrible treatments. The world has to know what has been going on in the last decades. This is not about privacy, it's about going public. It's about finding a cure.

 

[Marylib]

CAA vs. WPI --- but not coming out and saying it...

"This in my opinion was directly aimed at WPI and their online questionaire. I don't want to open a can of worm here, but why don't they deal with this issue with WPI directly instead of puting it out there on Facebook?"



Haven't you noticed? Very few people ever deal directly with each other...it is very sad.

 

[anne]

I don't blame Andrea one bit. I agree that it was transparent and undermines the WPI. It makes me think they feel threatened by them financially or some such.

It might be nice if the people who do agree make a comment. It's at least the second time they've posted something that appears to be undermining the CAA, and even it's an accident I think they need to be more careful.

 

[hvs]

This in my opinion was directly aimed at WPI and their online questionaire. I don't want to open a can of worm here, but why don't they deal with this issue with WPI directly instead of puting it out there on Facebook?

Given the timing, it's hard to see this as anything other than directed at the WPI.

Some of you will remember my deep disappointment at the CAA's complete failure to prepare the patient community and others for the inevitable and imminent CDC/NIH failed replication study. ...This little bit of cattiness from the CAA does not enhance my estimation of them.

 

[Kati]

. A careless and inadequately protected online survey response, for example, could impact my disability case down the road.

.

Shiso, please explain in which way they can take that against you??? I am curious here because I am also going through the disability procedures.

thanks,K

 

[Marylib]

Wondering why....

Okay, let's all face it. It is pretty clear that there are tensions between WPI and CAA.

Does it all have to do with money and who gets funding? It must.
I myself have never seen what the CAA actually does ..sort of like the pink-ribbon Cancer Society. Never understood all this flag waving fund raising.

I know I am over-simplifying, but why spend all the money on administrative salaries and on "media awareness" campaigns -- which have not made any inroads in educating physicians or politicians obviously. Obviously. Otherwise we would not all be here still wailing. We would be more like the MS community.

Aren't organizations like CAA and the Cancer Society in danger of becoming self-perpetuating cheerleading institutions? And costly ones at that?

I know Cort and others are really behind the CAA, but frankly...I want all the money into research and into finding a political patron who can actually has clout...maybe we all need to start over.

Okay I am done. And admittedly ignorant of all sides of the issue.

 

[Kati]

Okay, let's all face it. It is pretty clear that there are tensions between WPI and CAA.

Does it all have to do with money and who gets funding? It must.
I myself have never seen what the CAA actually does ..sort of like the pink-ribbon Cancer Society. Never understood all this flag waving fund raising.

I know I am over-simplifying, but why spend all the money on administrative salaries and on "media awareness" campaigns -- which have not made any inroads in educating physicians or politicians obviously. Obviously. Otherwise we would not all be here still wailing. We would be more like the MS community.

Aren't organizations like CAA and the Cancer Society in danger of becoming self-perpetuating cheerleading institutions? And costly ones at that?

I know Cort and others are really behind the CAA, but frankly...I want all the money into research and into finding a political patron who can actually has clout...maybe we all need to start over.

Okay I am done. And admittedly ignorant of all sides of the issue.

Marylib, I agree with you 100%. We don't need a cheering institution. Kim McClearly is being paid 177 grands per year- to do what??? What has the CAA accomplished throughout the years, and are they worried for their jobs at all?

Usually one of the main cause of disagreement is fear- and control. CAA wants to be in control of where the research money goes, and here came WPI, self funded, who came up with a brilliant research and looking for more money to pursue further research on our behalf.
This kind of control that CAA had allowed them to keep their jobs, so far. In my opinion, CDC and CAA have not brought solutions to our disease, just calmed the storms along the way, keep it quiet and under the carpet.

To have change happening in the history of this disease, we have to let go of the old patterns, and move together where success is and where the real leaders are.

In these times of tough economy, the purse holders have to be aware of what is irrelevant, redundant and unhelpful, and direct the maximum ressource where success and hope is.

 

[zero]

Kim McCleary's response on the CAA Facebook page:

Sorry, all. The post was intended as a reminder for people on this page and related to other questionnaires/surveys (the WPI survey included) where *anyone* (insurer, employer, disability company, marketers) can link your name, diagnosis and treatment information. We have received inquiries recently about whether Facebook or other sites are ... Read Moreprotected by HIPAA, or other privacy laws. Many people use internet connections/accounts provided by their employer and most companies have a policy that enables them to read and store any information sent through accounts. Ashley S-K makes an important point above. Others have asked us if there are settings we can use on Facebook to de-identify the posts (there are not). With all the recent questions/replies about specific treatments (and info disclosed), and budding interest by commercial entities in this "market" it seemed prudent to post a reminder.

No negative tone was intended. I searched for another resource to link to, but am having a slow recovery from H1N1 and ran out of steam when I didn't find one comprehensive enough to cover the types of questions we've received recently. Here's one: http://wikiadvocacy.org/index.php/Educating_Membership_about_Research

 

[Marylib]

"no negative tone was intended"

My alarm bells go off then I read remarks like that in the passive voice (hope I have that grammar terminology right!)

Kind of like saying "mistakes were made."

But hey, just my humble opinion...

 

[cfs since 1998]

Caa

When I saw Kim McCleary call Dr. Reeves "courageous" at last year's CFSAC I wanted to vomit. They also broke the scientific embargo on the Science publication. What good are they doing us?

 

[Marylib]

Huh?

When I saw Kim McCleary call Dr. Reeves "courageous" at last year's CFSAC I wanted to vomit. They also broke the scientific embargo on the Science publication. What good are they doing us?

She said that? Good God.

 

[anne]

Now, I think you're being too harsh. It takes a lot of courage to spit in the face of all scientific evidence and still call yourself a doctor.

 

[Cort]

She didn't say that! Nobody has been more after Dr. Reeves over the past year than the CAA. They dug into the files at the CDC and unearthed some pretty devastating evidence against them. They tried to get the CFSAC involved early in going after him and they refused. In fact the CDC believes the CFIDS Association of America is in a plot to get them (and that the patients would love them otherwise!).

That was a spectacularly inartful post about answering questionnaires by the CAA and the CAA does that at times. Sometimes I shake my head at what how they approach things. The CAA may very well be correct in the matter - they're very careful in that area and quite frankly that questionnaire was quite poorly done from several angles (see the post on WPI and Research Tab) and I'm not surprised that they messed up in the privacy portion but there better ways to communicate this.

There appears to be a real communication problem between many of the organizations. The HHV6 Foundation is mad at the WPI, the CAA is mad at the WPI, the WPI is mad at the CAA, and everybody hates hates the CDC - its really crazy how often these organizations step on each other's toes. I think its really a problem.

The WPI didn't send anybody to the CAA's big Banbury ME/CFS brainstorming weekend. Then CAA didn't jump on the XMRV bandwagon. The CAA questioned the WPI questionnaire. Of course we are the ones that don't benefit when everybody can't get together.

I don't know Andrea Whittemore but I can tell she's very passionate!

The CAA is trying to pulled together this international research network that will set standards for research, share samples and data and hopefully put a firecracker under the research community. Will the CAA and the WPI be able to interact together to do that? It would be crazy if they couldn't but only time will tell.

 

[cfs since 1998]

She said that? Good God.

She said, "It was Bill Reeves who took the courageous step to provide evidence about funding irregularities in the CFS program."

http://www.youtube.com/watch?v=bRaXeGWtcQI

 

[Cort]

Jeez, did you read the rest of the paragraph? Honestly that is really unfair. Just after that - and she was referring the whistleblowing he did ten years ago when she said that - she said "Now it is Dr. Reeves who is at the center of these problems." The entire presentation showed the CDC in a very bad light.

The video was listed under the statement "Kim McCleary illustrates gross mismanagement of the CFS program at the CDC".

If you want to read the entire statement its right here. I think you'll get a dramatically different picture of it if you read it.

http://www.cfids.org/advocacy/testimony-mccleary-oct2008.pdf

 

[Marylib]

Communication

It would be great if people could talk to each other instead of at or about each other. But this is how it is everywhere. Common to all humans. And so often there is so much at stake.

 

[cfs since 1998]

Cort, maybe I overreacted to that sentence but the CAA really just rubs me the wrong way. They seem disingenuous and self-serving to me.

Out of curiosity why is the HHV6 Foundation upset with WPI? Dr. Peterson is on the board so he can't be too mad at himself

 

[Cort]

Because they weren't communicating with them actually! I was doing some press releases for the WPI's Symposium on Viruses last year and Dr. Ablashi was burning at the WPI. He felt they were shutting him out. I asked him about the WPI and I got this barrage. I was completely shocked. (Annette Whittemore helped start the HHV6 Fdtn).

The WPI didn't send anyone to the three day Banbury Conference where many of the ME/CFS researchers met to brainstorm. Maybe they were just too busy - or maybe it was because of that Fundraiser they had -but that certainly raised some feathers at the CAA.

Now the CAA does statement: I agree it could have been communicated better. I posted this comment on their Facebook site.

I think everybody has a point. Honestly its hard to avoid the conclusion that this post was associated with the WPI questionnaire and if I was Andrea I would have felt hurt as well. On the other hand if there are problems with encryption or other issues with the questionnaire its good that the WPI knows that. The WPI is a relatively new organization that is learning how to do these things as they go along and, of course, its important that they do this particular project correctly.

The most important thing from my point of view as a patient is that everyone work together and communicate, communicate, communicate.This little spat suggests that for whatever reasons the two groups are perhaps not, for whatever reason, communicating as well as we all might hope (??). Hopefully we can all work together.

Really no one seems happy with the other! It could be that they're not communicating with each other - so this is how they communicate - through Facebook!

 

[hvs]

Aren't organizations like CAA and the Cancer Society in danger of becoming self-perpetuating cheerleading institutions? And costly ones at that?

The CAA could be saints--absolute saints--and they would still have to consciously or unconsciously struggle with this paradoxical conundrum. --If something fundamental about the CFS situation changes the entire organization is out of a job.

I am not at all saying a single one of them would ever consciously slow progress. No way. Even if there are professional bureaucrats and lab rats at th top, I'm sure many of the staff are there precisely because they have friends and family who are ill, etc.

I am saying that there is going to be a natural compulsion to react to things that threaten the institution in ways big and small.

I personally believe that the deal with the WPI is fundamentally different because of its interests and funding structure. First, the Whittemores are doing this because they believe they are in a race against time to save their daughter. Their mandate is to perform research and then translate it into treatment as quickly as possible. Forward, forward, forward. Try this, try that.

They would love to get this done today. After that, they can stop spending millions of their own dollars. Solve CFS and they can moderately support their institute and the institute can spend the rest of its lifetime seeking new grants and researching other neuro-immune disorders, etc.

 

[Marylib]

Well said, hvs

Yes, I think you are right. Whenever there is an impulse for change, for growth, the "old" institutions usually have to break. There is a book by Thomas Merton called "Contemplation in a World of Action" which speaks to this -- although in an entirely different context!

I think the world of CFS/ME has indeed changed -- the Whittemore's stepped out and made it change. They were the catalysts. So the CAA is in danger of becoming irrelevant and may come increasingly under attack.

And as you said, the people at the CAA could have the best intentions in the world, and hearts as big as saints, but their demise would still need to happen as we move forward.

If however, the CAA could be really brave, and really flexible, it could be less painful.

Just my musings...It will be interesting to see how it all plays out...