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

[Cort]

Thanks Fresh Eyes (love the avatar by the way).

I think that a big undertow of anger or upset at the CAA has built up over the years. I don't feel that way - I feel like they've consistently been doing good work - but its certainly there and alot of it has to do with CDC and their interactions with them to get them to fund the Media Campaign - which the CAA ended up running.

For that and other reasons (name change and more) some people are really upset at the CAA and they bring that with them.

The CAA, though, has done alot of good work over the past two years; they've gone after the CDC, they substantially upgraded their research program, they created a fantastically successful (and good) physician education program and they're creating a potentially ground-changing Research Network.

I don't know how anyone doesn't want (really want!) all of those things. This may not be the group everyone thinks it is. ...

 

[jspotila]

About the importance of patient characteristics in studying XMRV in CFS:

From the Q&A at the CFS Advisory Committee meeting (http://aboutmecfs.org/Rsrch/XMRVQA_CFSAC.aspx):

Dr. Daniel Peterson: Im not going to speculate as to what the findings would be, but I would [say], along with validated assays we have to validate the clinical group that we are looking at and I cant make that point strongly enough, especially in publishing validity studies. If I dont understand what patients they were looking at, it will really mean little to me as a clinician.

Dr. John Coffin: I completely agree with Dr Peterson that validating assays with a very well defined set of samples from a well defined set of patients, where you know everything you really need to know about them and then using that as a benchmark for the quality of your assay sensitivity, specificity and so on, also well defined sets of controls I might point out, is really critical to being able to do these studies in a meaningful way.

Chapter on host interaction from Dr. Coffins textbook on Retroviruses:
http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=rv&part=A3421


About the two versions of Xplained:

The original version posted on Oct. 15 reflected the information about patients/controls that was available in the Science article and its supplemental materials. It was updated on Nov. 3 to reflect additional information about patients/controls provided by Dr. Peterson at the CFS Advisory Committee. The current version of the article clearly identifies the source of the newer information.



About the BMC article that came out last week with Kim, Terri and Kasia as authors with Reeves:

http://www.cfids.org/about/whats-new.asp (3rd or 4th item down)

It does not use the empiric definition of CFS, nor did any of the materials distributed at the health care professional conferences described in the paper.

 

[hvs]

Looking back on this thread.

I think that this thread and other discussions like this one have been useful. I suspect that it has served as a good place to publicly air our problems with the CAA on the one hand and a place to defend the CAA on the other. I suspect that it along with other important venues has brought some serious grievances to the attention of the Association.

I just took a moment to go back and read my first post that started out this long thread. I actually proposed a pretty focused thesis: that the Association had failed in the first few weeks of the XMRV era.

My feeling is that even the staunchest supporters of the Association sense that the CAA flubbed it a bit--the CAA worded public statements about xmrv unfortunately, their Facebook postings didn't help them, maybe they were slow out of the gate in articulating their stance, ...even the CEO stated something about not nailing "content, tone, and timing."

On the other hand, there are those of us who feel that, for an organization who we pay to be world-class communicators, they let the patient community down tremendously. Some go so far as to say that this was the last straw: it goes beyond the immediate failure to reinforcing a pattern of greater, even terminal failures.

Neither side (and no one anywhere on the spectrum) has a monopoly on superior judgment in this debate. Generally, the folks on these fora are sharp and classy debaters. They make their case and support it with evidence. The only losers in the debate are those who imply that others who disagree with them are hysterical.

-----

Looking forward, I believe that we might know just about all we need to know about the CAA based on their reaction to the first replication study or few studies.

I believe that we have a confused picture of how the federal government is running the first replication attempt. We have different points of evidence regarding what kind of individuals they are actually testing. Will it be a legitimate test on real Fukuda- or Canadian-defined patients? Or will it be folks with Reeves' Disease? And, if both are in the same study, in what proportion will they be found?

How will the CAA react if the study is an almost complete failure? How well will they critique the study's methodology? Will they, for example, interview Dr. Silverman, the world's expert on XMRV to get his assessment of any failure? What if the federal replication study comes back finding 20% of individuals have positive test for active infection?

Again, I think their reaction will let us gauge what role they envision for themselves in the new XMRV era; whether they actually want to see a new XMRV era, whether the CAA as an institution that sort of "concretized" under one disease paradigm will resist a new paradigm out of an institutional instinct to preserve the status quo.

 

[Marylib]

For Char. fund raiser

Thanks for that.

I am happy to be educated further -- about just about anything! Including how scientists use language. I guess in the past, I have gravitated to reading science papers that were perhaps unique, in that the authors were somehow able to put their findings into a context I could relate to. So probably I have just avoided the others without consciously knowing I was doing so. .

(I regret using the term "buy it" when I did. It connotes a quarrel of some kind, and I am not a fan of quarreling. Especially when my brain works as poorly as it is working now )

 

[Marylib]

Answers for Cort

I'm defending them because they're doing excellent work. I think I'm making a great case for them actually. Let me ask you this.

• Do you consider that those are good research topics? Do you believe that they may help ME/CFS patients?
• Do you believe our national organization should go after the CDC when its appropriate? Do you believe the CAA did that?
• Do you believe an ME/CFS physician education program is a good thing? Do you believe the CAA did that?

Please answer those questions and tell me why that record of success in the last year and a half or so is not good enough for you. I think the CAA has had a spectacular last two years - its best two years ever actually.

CDC/Physician training program/ Research Intiative/ International Research Network/ Banbury Conference - its good stuff! Maybe people aren't aware of it - I don't know.

Rereading this post, I kind of feel like I have been summoned to the witness stand by an attorney! I am woefully unprepared to be a good witness...I would probably make a horrible witness, but I will try And I must apologize that I am not good with the multi quote-format-text thing, so I will have to just plain old write in what they used to call essay style.

Yes, I believe the research topics are good and may help. I would like to learn more about how they are chosen. Yes, I think the physician training program is wonderful. I would like to know who these physicians are so that people might be able to find educated physicians. Yes, I think a national advocacy org. should go after the CDC when necessary. From what I have read, it seems the CAA has done that many times, repeatedly.

As to why the record of the CAA has not satisfied me, well, I talked about that a while back in a post that was inspired by something Andrew said. If I knew how to call it up in a quote here I would do so, as I just do not have the brain cells at the moment to hash it all out again. So I will just say:

I think there is a groundswell movement at the moment, and I want to take advantage of it. I have been dismayed by the language that CAA has been using since the WPI study came out. I fear it indicates that the CAA is out of touch with us and on the defensive somehow. This sets off an alarm bell in me and makes me want to back away. This is because of personal experience I have had with another non-profit.

I want a new start. If the CAA can start anew as well, great! That would be wonderful. I just noticed that Kim has written a letter to the membership. I haven't read it yet but I am hoping it is indeed an indication that we are about to get a fresh start from the CAA . As hvc said ( I think it was hvc) time will tell how all this pans out. And I am grateful we have had the opportunity to air our concerns here, no matter what our points of view. Hopefully it has all done some good.

 

[Cort]

Thanks very much for your thoughtful replies.

I agree that the CAA missed the boat in terms of tone on XMRV. Its a real lesson for them and they're obviously trying to remedy the situation. It points out that to some extent they've been out of touch with the patients. I don't want to overdo this; alot of their public stuff is good but they've allowed, I believe, 'the conversation' over the years to get away from them particularly in the forums. I think they're realizing this has been a big mistake.

I'm reading Bill Clinton's autobiography - it reminds me of the situation in his first few years as President when he actually got a tremendous amount of legislation passed but was viewed as an ineffectual President because he allowed the conversation (the haircut, gays in the military) to be dominated by the wrong subjects.

When I step away from the conversation I see that organization doing ALOT of good. I worry greatly about them because I don't any one else doing anything on their scale - yet the logical conclusion of the general conversation is that they will gradually fade away and become less and less effective. This would be a huge loss in my opinion.

 

[Marylib]

This is great, Cort

When I step away from the conversation I see that organization doing ALOT of good. I worry greatly about them because I don't any one else doing anything on their scale - yet the logical conclusion of the general conversation is that they will gradually fade away and become less and less effective. This would be a huge loss in my opinion.

I really appreciate your post, especially the paragraph quoted above. It so much helps me understand better where you are coming from. I understood the facts you have brought up but was somehow missing a context. It helps me to know this, as I greatly value understanding the perspective of others but it often takes me quite a while to get there! Thanks for hanging in with me.

 

[hvs]

So when Vernon or anyone says something like (to paraphrase), "we need some data; it's not in the paper," they mean just that. There is nothing to read into it. They really do need some data and it's not in the paper.

It has nothing to do with the quality of the research or even necessarily anything to do with WPI. It's possible that Science Express told them they couldn't fit it in.

Right, but charity, the CAA is not a set of scientists commenting on the work of another lab. They're our paid communicators. They're supposed to be experts at crafting the message and guiding the agenda. When they raise questions about the WPI's methodology that imply that the WPI was not thorough, they inadvertently serve the Reeves of the world.

Honestly, this isn't a fine point. They need to be shrewd and disciplined in all of their public statements. That, far more than their relatively tiny research budget, is what we pay them for.

 

[fresh_eyes]

...the CAA is not a set of scientists commenting on the work of another lab. They're our paid communicators. They're supposed to be experts at crafting the message and guiding the agenda.

hvs, this really struck a chord with me. I know a bit about PR, and one big problem we have is that the "brand" CFS (and CFIDS, ME, etc.) is really, really tainted (whether the CAA is responsible for this, I can't say - though people seem mostly unsatisfied with their one big PR campaign).

If there's ever been a time to "re-brand" this disease, it's right now - but the CAA doesn't seem to be doing it. I think it could be fruitful to discuss exactly how we'd like to see public perception of our illness change, and how we think that might be accomplished. (The AIDS quilt comes to mind as a success story of this kind of grassroots "re-branding".)

 

[mvwu]

Cort, thank you for explaining more where you are coming from. JSpotila, I am glad you are a part of this discussion, for it gives me more confidence the CAA is listening to patient input. Speaking of patient input -- below are two specific ideas, given the problem with the original Xplained, of things the CAA could do to improve its timing, tone AND content.

----When a spokesperson for the CAA believes she has a valid criticism of the work of a research institution, she could talk to the researchers who did the study about her criticism before publishing it. In the Xplained case, Dr. Vernon may have; it appears that she did not.

-----When the CAA finds it has been somewhat off in its public criticism of a study, it could issue a public correction, not just erase the erroneous criticism from its website. In the Xplained case, I think this was particularly important to do, for the original article left the impression with some of your membership that the WPI study had a serious flaw.

Both these suggestions are consonant with standard journalistic practice. Implementing them would increase the confidence of the membership in the CAAs leadership and create harmony between the CAA and the research organizations working to find a cure for this dreadful disease. We all want that.

 

[fresh_eyes]

-----When the CAA finds it has been somewhat off in its public criticism of a study, it could issue a public correction, not just erase the erroneous criticism from its website. In the Xplained case, I think this was particularly important to do, for the original article left the impression with some of your membership that the WPI study had a serious flaw.

I was one of those left with that impression. I think this is an excellent suggestion.

 

[mvwu]

I was one of those left with that impression. I think this is an excellent suggestion.

Thanks, FreshEyes.

I think it could be fruitful to discuss exactly how we'd like to see public perception of our illness change, and how we think that might be accomplished.

I couldnt agree more. I think well be rebranded pretty quickly if XMRV turns out to be causing CFS, autism, FM, and some cancers, but best to start now with our best foot forward. Im new at this. Do we need a new thread?

 

[starryeyes]

This thread has been very helpful to me. I apprecitate hearing the different views of our CFS community here. I've learned a lot more about the CAA and what it's doing and not doing for us from reading this thread. I appreciate all of the viewpoints here, for CAA and against CAA. I think this is one of the most important discussions I've ever seen on a CFS message board. The CAA represents us, the patients, and now we can finally get together and discuss how we feel about what they are doing. This is very important to us.

 

[Marylib]

For charity fund raiser

The rest is- sorry I know I'm blunt- talking in circles, venting, and complaining.
.

Like Teej, I also think this thread has been very valuable to us as a community. But I understand that it has not perhaps served your interests in gathering practical ideas about PR, etc.

Maybe you could start another thread in the advocacy section to stimulate ideas along these lines. You could certainly give it a try and see. It would perhaps save you having to read through threads that don't have much meaning for you.

 

[fresh_eyes]

I think we’ll be rebranded pretty quickly if XMRV turns out to be causing CFS, autism, FM, and some cancers, but best to start now with our best foot forward. I’m new at this. Do we need a new thread?

Hi mvwu. I've thought the same thing, that if everything went perfectly, XMRV would take care of our rebranding. If I had to hazard a guess at this point, though, I think things are likely to remain inconclusive for some time. If everybody was testing XMRV+ it would be game over, but it doesn't look like that's happening, not yet anyway. I'll go ahead and start a new thread.

EDIT: OK, it's under Advocacy, as "help 're-brand' CFS". Come on over and chime in, y'all.

 

[mvwu]

Request to JSpotila

I slept with this forum dancing through my head – not exactly sugarplums – but woke up with an idea. Putting together several observations:

--many members believe that the CAA doesn’t listen to patient input
--there are a number of ideas here that could use a direct response,
--the Chairman of the Board, Jennie Spotila, is reading and participating in this forum.

Perhaps Jennie Spotila would be willing, if we were to start another thread devoted only to concrete suggestions for change, to respond to those suggestions.

Jennie, would you? You could say, “Hey, great idea, I’ll take that one to the board.” Or, I’ll talk to Suzanne Vernon about that.” Or, “Good idea. Actually we are already doing that. See this link.” And so on.

The CAA is certainly aware we natives are restless post-XMRV and may be willing to make changes so as not to lose membership. This may be a great opportunity for membership and leadership alike to sit down (or lie down as the case may be) and talk.

 

[fresh_eyes]

I slept with this forum dancing through my head – not exactly sugarplums – but woke up with an idea. Putting together several observations:

--many members believe that the CAA doesn’t listen to patient input
--there are a number of ideas here that could use a direct response,
--the Chairman of the Board, Jennie Spotila, is reading and participating in this forum.

Perhaps Jennie Spotila would be willing, if we were to start another forum devoted only to positive member suggestions, to respond to these ideas.

Jennie, would you? You could say, “Hey, great idea, I’ll take that one to the board.” Or, I’ll talk to Suzanne Vernon about that.” Or, “Good idea. Actually we are already doing that. See this link.” And so on.

The CAA is certainly aware we natives are restless post-XMRV and may be willing to make changes so as not to lose membership. This may be a great opportunity for membership and leadership alike to sit down (or lie down as the case may be) and talk.

Totally with you on this mvwu. Perhaps you could pm Jennie to make sure she gets this message, and maybe cc the other board member here - can't remember his name.

One thought - I'm not sure if "positive suggestions" is the best to phrase it, because we don't want people to feel they can't have any negative feelings toward the CAA. Perhaps "concrete suggestions for changes" is more like it?

EDIT: Upon rereading, I see you said "another forum" - do you mean a whole 'nother forum, or just another thread/section on this forum?

 

[mvwu]

Totally with you on this mvwu. Perhaps you could pm Jennie to make sure she gets this message, and maybe cc the other board member here - can't remember his name.

One thought - I'm not sure if "positive suggestions" is the best to phrase it, because we don't want people to feel they can't have any negative feelings toward the CAA. Perhaps "concrete suggestions for changes" is more like it?

EDIT: Upon rereading, I see you said "another forum" - do you mean a whole 'nother forum, or just another thread/section on this forum?

I will pm Jenny and copy the other board member. And I'll edit the above post to "concrete suggestions for change." And you are right -- I meant "another thread." I'll edit that too. Thanks.

 

[Cort]

A great idea but that's already been done by Khaylal recently actually. Jeannie is reading them over now.

 

[Cort]

Again, I think their reaction will let us gauge what role they envision for themselves in the new XMRV era; whether they actually want to see a new XMRV era, whether the CAA as an institution that sort of "concretized" under one disease paradigm will resist a new paradigm out of an institutional instinct to preserve the status quo.

Here's what I think will happen. Actually I would be surprised if this doesn;t happen. Unless XMRV tanks completely -which I can't imagine - a certain percentage of patients will test positive for it. The patients will state that means they have XAND and they are a new subset and have a different disease.

The CFIDS Association will react cautiously; they'll call for more research and point out that that doesn't indicate that the virus causes the disease and that's absolutely true. Think for instance, if only really ill people have the virus - in that situation they could be simply be collecting viruses. Some patients will react negatively to that and accuse of Association of not being with them or being against the WPI or having their own agenda. Instead they'll be reacting in a prudent manner.

The CAA has nothing to lose by having XMRV be the cause and everything to gain; more members and money for them as CFS gains recognition and legitimacy, a great research topic for their research program, a great hammer they can use to ask for more research funding on the Hill (they do that every year). They're not funding any single topic - they don't have all their irons in one fire - their research program is very diverse and they'll easily be able to incorporate XMRV into it. As you might have read Kim's husbands mother and her daughter both have CFS; if XMRV works out a win for her personally with her family and FOR EVERYBODY.