Time for the Big Talk. How's the CAA doing?

[Cort]

The NCF did some nice research with ciguatera and undoubtedly they have some nice research going but their pattern of slamming virtually, and I mean everybody, caused me to back off. They tried to ruin Dr. DeMeirleir - absolutely ruin him - over something that made no sense. I'm not surprised at all that they've dissed the WPI's findings; that's been their MO for years. Honestly, I just stay away from them. It's too bad they can't just focus on research.

 

[Cloud]

I really don't know much of the history on the integrity of the CAA, nor do I base my opinion on others bias'. I tend to give everyone the benefit of the doubt and in fact to my own detriment at times. I'm also a fan of focusing on the positive because......"that to which we focus our attention grows stronger". But I have to say that some of the CAA's actions cause me concern as well. I watched the CAA immediately publicly criticize what they perceived as shortcomings with WPI study, and yet not say a word about the truly flawed CDC replication study. So, if they are just being cautious about everyone involved using proper scientific technique, why is nothing said publicly about the CDC study?

 

[Cort]

Actually CAA lead the way on documenting the CDC's lapses. They were the first to openly call for Dr. Reeves resignation - based on their documented evidence of wasteful spending. If only, if only - the other groups had gotten in behind them a year ago - we might have a very different story on our hands now with the CDC. Unfortunately they didn't and we're where we're at - with a CDC program that's going on basically as it did before.

 

[Cloud]

Thanks Cort....Like I said, I don't know the history that well and I appreciate your views. I was only going on what I see them post (or not post) on FB regarding these xmrv studies. I hadn't seen anything there about this current flawed CDC study, and that had me concerned.

I am concerned about the current CDC replication study for obvious reasons. We have top researchers stating that they are very concerned about this study and it's use of different selection criteria that will undoubtedly yield damaging results. No one can answer why the CDC gets away with doing this when our private researchers are held to the strictest of scientific standards. This flawed CDC replication study seems like a re-run of the DeFrietus tragedy which could leave us with another 20 years of unnecessary suffering. So, I feel that our advocacy groups should be screaming very loudly about this flawed study!!

 

[anne]

Agreed, Ross.

 

[Andrew]

One other thing Hillary Johnson contributed. See the photocopy on her site of the internal government letter that requested the investigation of the CDC. Her book was cited as the reason for launching the investigation. So it may well be that her book set the dominoes going and Reeves whole whistle-blower thing was a classic case of CYA.

As for the criticism of the CAA, I don't see any of it pointing at all the work they did in the early years of research and activism. It begins when the CAA entered into a partnership with the CDC. The claim is that they compromised their mission as advocates to facilitate their partnership with and funding from CDC. Frankly, I've seen evidence of this. Their joint "faces" campaign sounded like it was written by someone who had never spoken with a pwc. It also pointed to bad information at CDC.

But even if the CAA did go over to the dark side, it is also possible for them to come back from there. I hope the groups can make peace. It hurts use if we can't at least appear to stand together where we agree.

 

[fresh_eyes]

"faces" campaign

I've read a number of comments critical of that CAA "faces" campaign, but I didn't pay much attention to it at the time and can't find much about it now - anyone want to fill me in on what they didn't like about it? What did it say?

 

[George]

Hmmm

The "faces" campaign; is that the "SPARK" The Campaign to Ignite CFS Awareness? Question about that. . . I noticed that they have not updated their site in the science and research area since 2008, Anyone know why?

Does anyone have information on the number of CFS cased diagnosed in say, 1970 vs. 1980 vs 1990 vs. 2000?

I have the outbreak numbers from 1934 to 1984 and it shows a definite growth pattern but I'm concerned my numbers aren't accurate. I was wondering if there are are a good set of statistics out there?

Thanks for any info. I'm a newbie

 

[Marylib]

the CAA

Well, I never could figure this group out. Never could.
Marylib

 

[Lisette]

The Vacuum

When the CAA is not effusive with praise for various research studies, it seems to expand the vacuum that is created by the CDC's mumbling reasons for ignoring them.

In the world of science, caution is a virtue, but in the world of advocacy it is a whisper of unbelief. It feels like a politician trying to "distance himself" from some one or some activity he's ashamed of.

And we all know, when there is a vacuum in the medical science, the Wessley school is primed and ready to fill it in with their "studies" and comments and insistence that biophysical research is unnecessary. They are a tiny group but they have itchy wanderlust feet and highly polished shoes.

The role of advocacy that the CAA holds should not be threatened by this, because they have the patients behind them. They can make the clarion call that fills that vaccum-- we are interested in supporting research into biomarkers and medical treatments and we are not bound to any institution that has a different agenda.

 

[Andrew]

I've read a number of comments critical of that CAA "faces" campaign, but I didn't pay much attention to it at the time and can't find much about it now - anyone want to fill me in on what they didn't like about it? What did it say?

I traveled to see the "event," which turned out to be a bunch of photos of somber people. There were pamphlets attached to the display, with the theme of "Get informed. Get diagnosed. Get help.” My first thought was "Are they kidding. What do they think I've been trying to do. How about telling me something useful, like where to find a doctor who can do this. Or how to deal with the insults. Or how to make some sense of what I'm feeling." And then the rest of it was just the marginal information from the CDC website. I felt it was worse than nothing, because just getting to and from this display caused me a crash. But I spent the next month looking at the pamphlet for a grain of something to hang onto. It wasn't there.

They spent over 1 million dollars on this. If they had taken that money and spent it on accomplishing a name change, it would have done a lot more good than a bunch of photos and useless information. It could have brought just as much publicity, and sent an important message. But that's what happens when you get into bed with the CDC.

And now the CAA has a new style of newsletter, which contains less information and has pages that are so big I can't read it while lying down. And even if I could read it, I wonder if it will just be more patting themselves on the back.

I can't say I'm thrilled with the National CFIDS Foundation either. Many of their attacks on others are ridiculous. And it is difficult to sift through their newsletter, because the anger is over the top. But I can say that their articles (other than the political ones) are among the most helpful I've read. I've actually learned some things that my doctor and I are looking into implementing. And I like the research they do.

I think I might also give CAA another chance. They seem to be changing their approach. I'm still very upset, though. But maybe I can get past that.

BTW, Pandora looks like an interesting group.

 

[Cort]

I don't think the exhibit was really meant for CFS patients - I think it was meant to educate the general public. Yes it had very simple and general information but I think that's the way most of these things go; they're targeting a very wide audience.

The CDC paid for the media campaign get the word out about CFS of which the traveling exhibit was just a part. (The CDC is never going to pay for a name change effort I'm afraid.)

Of course they're constricted when they deal with the CDC or the NIH or any other federal agency actually; they're all very conservative and I don't think any of us are going to be ever really satisfied with anything they put out for the public. That conservatism is one reason CAA developed their own physician education program.

Personally I thought it was very tastefully done - I loved the pictures and the descriptions of the patients - looking serious yet not grim. Its not easy to portray the face of illness without turning off a public that doesn't like to see negative things. I liked the way the big panels stood out - I thought that for what it was it was very nicely done actually.

 

[Jerry S]

The CAA's "Faces" campaign

"Faces" came here to Chicago and was displayed at a downtown Michigan Avenue mall. It has had zero impact, as far as I can tell.

I was too sick to go see it. It came and went, and things go on here the same as ever.

When I had to go to the emergency room last year for chest pains, I listed CFS as an existing condition. From the reaction I got from doctors and nurses, that's the last time I'll even mention "CFS" to non-specialists.

 

[Cort]

I think that's a good idea Jerry.

We are starting out at a very low point and its disappointing to see little progress but a big part of the problem is the federal government's unwillingness to do virtually anything significant on our behalf.

Even though the Traveling Exhibit did not impact your experience at the hospital it was the first time that anybody had ever gotten any part of the federal government to attempt to communicate about chronic fatigue syndrome to the public using the media. Just getting the federal government do that was in itself quite an accomplishment.

 

[Andrew]

Of course they're constricted when they deal with the CDC or the NIH or any other federal agency actually; they're all very conservative and I don't think any of us are going to be ever really satisfied with anything they put out for the public. That conservatism is one reason CAA developed their own physician education program.

This is why I think it was wrong for the CAA to be partners with the CDC. They should not have been partners in this kind of conservative constrictive approach. They should have been clamoring for change.

FWIW, there are studies that show the name "chronic fatigue syndrome" is harmful to us. There is no reason why the CAA can't take this to members of congress and try to get them to bring pressure on the CDC to change the name. Assuming the CAA even supports a name change.

 

[cold_taste_of_tears]

I think CFS will stay as CFS under the CDC. (There's too much money to be lost in giving up a label of chronic fatigue and handing out anti depressants, counselling, psychological therapies). CFS is a wonderful tool to cover up environmental illnesses which may increase over the next few decades due to increase contamination/pollution.

To remove CFS now, would mean there is no scape goat - and the patient can no longer be blamed. This is what the brilliance of CFS is. It's mutli tasking - it can 'fit' any state of chronic fatigue. So big businesses, government and of course, psychiatrists - love it.

Anyone with XMRV doesn't have CFS by nature of what CFS is classified as. As long as we do test positive for XMRV, then CFS doesn't matter anymore. It's a misdiagnosis. Just as if an HIV sufferer met the criteria for CFS - and never had an HIV test. Once they are HIV+ this is their new designated disease label.

We shall have to wait and see I guess if the people on here very sick all test positive within the next year, or a small percentage.

 

[hvs]

While this thread is seeing renewed traffic, I'll just raise this issue:

When the German study failed to find xmrv in certain tissues of prostate cancer patients, the CAA provided a link and declared the news a "cautionary tale" for CFS patients. After taking some flak for appearing to implicitly cast doubts on the WPI Science study, they explained that they were rather "throwing a protective tarp" [not sure I have that verbatim, but close] over the patient community to keep off any eventual rain of disappointment.

Now, when a CDC/NIH replication study is imminent-- a replication study that must necessarily fail because its subjects will not be ill with the same disease as the WPI's subjects at the same rate--where is the CAA's "tarp"? Why, why, why aren't they warning their membership that their family and neighbors are about to see headlines heralding that vaunted federal institutions have squashed the WPI study?

How am I not supposed to conclude that the CAA won't mind it if the WPI gets humbled?

 

[Advocate]

Why, why, why aren't they warning their membership that their family and neighbors are about to see headlines heralding that vaunted federal institutions have squashed the WPI study?
?

I'm trying to hope for the best. Maybe they have PR releases and Letters to the Editor ready to go the minute that study comes out. Maybe they are planning a huge campaign to discredit it if a watered-down cohort is used.

 

[George]

Now, when a CDC/NIH replication study is imminent-- a replication study that must necessarily fail because its subjects will not be ill with the same disease as the WPI's subjects at the same rate--where is the CAA's "tarp"? Why, why, why aren't they warning their membership that their family and neighbors are about to see headlines heralding that vaunted federal institutions have squashed the WPI study?

Wait, wait! we sometimes forget that there are 7 replication studies going on right now. Take a minute and think about that. Out of the 7 at least 5 of them want XMRV to be correllary. If a correllation is found (not cause just link) then it will open up 10's of millions of dollars for research. Some of the money will be from goverments but much more will be from Pharma and diagnostic companies with money to make down the road. Heck right now a dose of Ampligen runs $150 and a person needs two doses a week. That's like $1200 a month. I remember when the HIV med cocktails came out it was running these people between $2,000 and $3,000 per month!

Even if the CDC numbers come out with something like 20% to 2%. The 2% number is going to keep this thing going. Even if other studies come out low if there is any number in the healthy population it will keep it going. In addition, the other side (our side) can simply pull out the fact that the criteria is a mess. How can you get good numbers if no one is using the same patient population??

Personaly I don't believe it matters what numbers the CDC pulls out of their . . . ahem, hat, and the CDC powers that be know it. The study to watch is Dr. Paul Jolicoeur The University of Montreal, Canaida. The Canadians have the strictest criteria, if their numbers are even close to the WPI's numbers the CDC becomes illrelevant.

 

[Katie]

I just did a quick google of Dr Paul Jolicoeur and I'm very happy with his credentials. Just this sentence on Wiki made me think 'he's the type of guy I want looking at my blood'

His principal specialisms are the detection of new oncogenes, the study of degenerative neurological illnesses and research into AIDS.

I look forward to his results, I've got a crush on the Canadian Criteria