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

[Marylib]

for Khalyal

You go, girl.

 

[Cort]

ME/CFS is full of complex issues. Take this one:

If the CAA, or its leadership, could represent the disease as being exactly what it was based on, and not turn the original descriptors into just another subset of a fatigue disorder, then I would feel like we had some real advocacy going on.

What was CFS 'based on'? Well you could say the original CFS dates back to the descriptions of epidemic outbreaks in different areas. It would be fine to create an organization around epidemic outbreaks that result in a wide range of puzzling symptoms one of which was fatigue. (If you read the original studies you will see fatigue or it's equivalent mentioned prominently in the outbreaks).

You'd probably want to throw Incline Village in there but if go back to the original papers you'll find a significant portion of the people had gradual onset and more importantly the authors - ie Cheney, etc. - could not differentiate between the symptoms described onset patients had an acute onset patients.

But what about the many people who come down this disorder after getting infectious mononucleosis? They don't fit in the original outbreak pattern. And then what about people who have a gradual onset? What about people who had an infectious event and then seemed to recover and later gradually got ill.

If the CFIDS Association is going to represent chronic fatigue syndrome they're going to have to represent everybody that falls under the current definition - no matter how poor it is.

But when the patient fact sheets and physician packets describe something that sounds a lot closer to Teitelbaum's disease than it does to Peterson's disease, then there is a disconnect. When the CAA says that Osler's Web is old history and no longer relevant, there is a disconnect. When the Faces of CFS project makes us sound like we are suffering from tiredness, there is a disconnect. When every single XMRV related grant request gets denied, there is a disconnect. When genetic research is based on the allostatic and stressor-related genes, there is a disconnect.

I think you're putting words the CAA's mouth when you say they say Osler's Web is old history and I disagree with your Faces of CFS project assessment - my impression after viewing it was that presented presented chronic fatigue syndrome as a very serious illness. As I remember it illuminated the stories of very successful people who's lives had been turned upside down by this illness. Tiredness does not do that.

I would love to hear what you mean by this: When every single XMRV related grant request gets denied, there is a disconnect.

The genetic research came out of the Pharmacogenomics study. That was an open-ended study; by that I mean they poured enormous amount of data into their databanks and analyzed it and out popped abnormalities in the cortisol and other genes. I'm not sure how you would do science but I think most scientists would take that result and a) see if it's real and b) if it is expand on it. Well the cortisol gene polymorphism results turned out to be real and the further they dug into them the more they got. That's pretty unusual in chronic fatigue syndrome. I'm not saying that cortisol is the be all and end all in chronic fatigue syndrome. Its clear that if XMRV works out that it will far overshadow the cortisol results but we do know that XMRV has a cortisol receptor and something needs to trigger it. At some some point all these different data needs to fit together and it's very possible that there will be a significant cortisol/XMRV connection at some point.

With regards allostatic stress. When I first talked to Suzanne Vernon a couple of years ago she stated in more emphatic terms than she allowed me to publish that she considered allostatic stress a dead-end and none of the studies at the CAA have looked at it.

I agree that the CAA could have handled XMRV better. It's a very, very (very) exciting finding and they turned off people by being so cautious. I think they could've been more enthusiastic and cautious at the same time; they missed the boat on that one. At the same time they are trying to get together funding for a replication study; they are watching carefully to see replication studies are done correctly.

 

[Cort]

I agree we are in a fight for our lives! That's why when I see the only support organization is doing anything significant in this field being torn down again and again I really taken note. When I see nothing about their accomplishments I really really take note. This organization is doing things and those things are not been reflected in your blog or the the conversations about them. Look at the things they've done over the last couple of years.

• Created the first good physician education program and put it on a site where it as for the first time gotten a lot of physicians educated properly about this disease.
  
• Uncovered the horrific financial mismanagement at the CDC and lead the fight to have Dr. Reeves replaced. You could very easily make the argument that the CFIDS Association's willingness to fully take on the CDC created the backdraft that finally blew the IACFS/ME and the CFSAC into action.
  
• Produced a very successful Research Initiative which spawned a very innovative set of studies, the three day researcher brainstorming session at Banbury - something that hasn't happened for many years - and funded several mini studies and went on to get full NIH grants - something that's proven to be incredibly difficult over the years.
  
• Dr. Vernon is now producing An International Research Network that will allow researchers to standardize their approach to this disease, share data and samples and should significantly speed up the pace of ME/CFS research.

I am not saying that the CFIDS Association is the be all and end all or that it hasn't had it's problems or its missteps but I am saying that is a very valuable organization and continually slamming it is dangerous. Who really wins when that happens? I'll tell you two people who do: the CDC and the NIH - both of whom would love to see this disease disappear and love to see the CAA - both of whom consider it their chief adversary - fade into insignificance.

That's right they consider the CFIDS Association to be their chief adversary. They don't give a rats ass to put it bluntly about individual patient complaints. They worry about a powerful national organization that could at some point go toe to toe with them.

If you think the CFIDS Association hasn't worked harder than anyone else on the CDC then take a look at this page. http://www.cfids.org/cfidslink/2009/070108.asp. If you think other organizations were meeting with senators and congressmen in order to push the CDC to to get rid of Dr. Reeves you're wrong. If you think anybody else did a rigorous detailed critique of the CDC - you're wrong there again.

What we need regarding the CAA I believe is a discussion that looks at their strengths and their weaknesses.

 

[Advocate]

What we need regarding the CAA I believe is a discussion that looks at their strengths and their weaknesses.

This is good. This helps. I'm glad that you using a lot of illuminating detail to point out their strengths.

 

[Khalyal]

Discussion

I agree that a healthy discussion looking at pros and cons is worthwhile.

Cons included, Cort.

You read my blog, and you know there was a context to it....the unfolding of the aftermath of WPI's XMRV report and some behavior that a lot of us were unhappy with.

There was also a statement that I had been in contact with Brian Smith and was trying to develop a rapport.

Yet you choose to post everywhere on the internet that I only referred to S Vernon once, and in a negative context.

In fact, I referred to her three times in that blog piece, and all in context to the concerns of the sick population on the back of the XMRV cold war.

And, as I have stated, at the VERY LEAST there is a terrible disconnect and if nothing else a huge branding problem.

I also mentioned this in the context that I don't feel that CAA ever addressed the concerns over S Vernon's ties to the CDC in a way that made us all comfortable.

I am not a "reporter. You are. I find your "reporting" to be quite selective.

 

[hvs]

I agree we are in a fight for our lives! That's why when I see the only support organization is doing anything significant in this field being torn down again and again I really taken note.

Alas, very many of us here see the CAA failing us just as we are entering the battle that will either liberate us from the CDC and the medical profession's ignorance and inertia or condemn us for years and years.

Yes, the expensive "Faces of CFS" thins was an outrage because we have seen what a couple of researchers can do with a million dollars.

Yes, we wish the CAA had helped fund the biggest breakthrough in CFS research ever (at worst, xmrv should provide a huge red flag for a CFS diagnosis).

But the real problem is this moment. It is at this moment that the CAA is dropping the ball--or worse, showing their cards that they are knuckling under to their bureaucracy's mindless compulsion to attack a rival power center in the WPI--with potentially devastating consequences.

 

[anne]

I agree. Regardless of what's happened in the past, they dropped the ball here. Now they need to pick it back up and run the hell down the field. And whoever is doing their Facebook postings probably needs retraining. : )

 

[Marylib]

This debate

I find this debate very educational and thank you all.

Having read Cort's defense, I am certainly better informed.

But I am still leery of the CAA at this point in time.

And why should we not hold the CAA up to scrutiny? What is there in our questions, our criticisms that puts CAA in harm's way? And why are they defensive about the WPI? Because WPI is angry about not have been previously funded? So what? Because Andrea bailed out of CAA? So what? She can do as she pleases. Resent whom she chooses.

The CAA is a publicly funded group, right? They have people working for them who are very well paid, right? No one likes a sh**t storm to come at them, but it comes with the territory when you accept a job..

What, am I all wet here?

Are we missing the obvious point that one research group took one million dollars and totally changed the game? And the CAA was obviously resentful in some way?

Some body tell me I am wrong.

 

[Kati]

I wonder what Hillary Johnson has to say about all of this ?

 

[Khalyal]

Khaly said:
If the CAA, or its leadership, could represent the disease as being exactly what it was based on, and not turn the original descriptors into just another subset of a fatigue disorder, then I would feel like we had some real advocacy going on.

Cort said:

What was CFS 'based on'? Well you could say the original CFS dates back to the descriptions of epidemic outbreaks in different areas. It would be fine to create an organization around epidemic outbreaks that result in a wide range of puzzling symptoms one of which was fatigue. (If you read the original studies you will see fatigue or it's equivalent mentioned prominently in the outbreaks).

You'd probably want to throw Incline Village in there but if go back to the original papers you'll find a significant portion of the people had gradual onset and more importantly the authors - ie Cheney, etc. - could not differentiate between the symptoms described onset patients had an acute onset patients.

But what about the many people who come down this disorder after getting infectious mononucleosis? They don't fit in the original outbreak pattern. And then what about people who have a gradual onset? What about people who had an infectious event and then seemed to recover and later gradually got ill.

If the CFIDS Association is going to represent chronic fatigue syndrome they're going to have to represent everybody that falls under the current definition - no matter how poor it is.

Khalys reply:
No, I dont want to JUST throw Inline Village in there. The Incline Village outbreak is what CFS was named for, as described in Oslers Web. Certainly there were prior outbreaks of ME or an ME-like disease. But CFS was named specifically for the EVIDENCE THAT CREATED IT. What the CDC has done to it since then negates the very people the disease was named for.
What you are saying regarding the CAA being obligated to represent cfs under the current definition is preposterous. One of the things they are supposed to be fighting so hard against, according to you, is the disastrous empirical. How can they fight it and support it at the same time?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Khaly said:
But when the patient fact sheets and physician packets describe something that sounds a lot closer to Teitelbaum's disease than it does to Peterson's disease, then there is a disconnect. When the CAA says that Osler's Web is old history and no longer relevant, there is a disconnect. When the Faces of CFS project makes us sound like we are suffering from tiredness, there is a disconnect. When every single XMRV related grant request gets denied, there is a disconnect. When genetic research is based on the allostatic and stressor-related genes, there is a disconnect.
Cort said:

I think you're putting words the CAA's mouth when you say they say Osler's Web is old history and I disagree with your Faces of CFS project assessment - my impression after viewing it was that presented presented chronic fatigue syndrome as a very serious illness. As I remember it illuminated the stories of very successful people who's lives had been turned upside down by this illness. Tiredness does not do that

.

Khalys reply:
No, I am not putting words in the CAAs mouth. This is what was said to someone regarding a Facebook post several months back. Another branding issue?

I know you disagree with my assessment of the Faces project, you have said so. However, it is not my assessment alone. Many people expressed disappointment in the presentation.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Cort said:

I would love to hear what you mean by this: When every single XMRV related grant request gets denied, there is a disconnect.

Khalys reply:
Here is the list of grants for 2008/2009
.http://www.cfids.org/about-cfids/research-update.asp
The very first one is another Epstein-Barr related study.
There are no grants for any XMRV related grants.
On the November 16 Facebook notes from the CFIDS Association, it was questioned as to why the WPI did not receive grant money for its research. CAA replied,
In November 2008, the Association announced the funding of 6 new CFS studies after a rigorous review process to identify the studies with the strongest scientific and strategic merit of the 21 proposals received. ... We don't disclose details of proposals not selected for funding, but it was a very competitive process.
A miscommunication, perhaps? A badly-communicated response?



~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`


Cort said,

The genetic research came out of the Pharmacogenomics study. That was an open-ended study; by that I mean they poured enormous amount of data into their databanks and analyzed it and out popped abnormalities in the cortisol and other genes. I'm not sure how you would do science but I think most scientists would take that result and a) see if it's real and b) if it is expand on it. Well the cortisol gene polymorphism results turned out to be real and the further they dug into them the more they got. That's pretty unusual in chronic fatigue syndrome. I'm not saying that cortisol is the be all and end all in chronic fatigue syndrome. Its clear that if XMRV works out that it will far overshadow the cortisol results but we do know that XMRV has a cortisol receptor and something needs to trigger it. At some some point all these different data needs to fit together and it's very possible that there will be a significant cortisol/XMRV connection at some point.

Khalys reply:
Cort, you continue to make it out that I am blanketly bashing the CAA. The statements you made prior to this one were points that you brought up and that I addressed. There is no need for Im not sure how you would do science.. Thats a little unreasonable.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Cort said,

With regards allostatic stress. When I first talked to Suzanne Vernon a couple of years ago she stated in more emphatic terms than she allowed me to publish that she considered allostatic stress a dead-end and none of the studies at the CAA have looked at it.

Khalys reply:
That may be, and if so Im glad to hear it. Its hard to imagine, though, what she thinks. Her perception of CFS seems to not be in accordance to what history says it is. Once again, I stand by what I said, that if nothing else, there is a huge disconnect, and a massive branding issue.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Cort said:

I agree that the CAA could have handled XMRV better. It's a very, very (very) exciting finding and they turned off people by being so cautious. I think they could've been more enthusiastic and cautious at the same time; they missed the boat on that one. At the same time they are trying to get together funding for a replication study; they are watching carefully to see replication studies are done correctly.

Khaly's reply:
As I've said, repeatedly, at the very least there is a disconnect and a huge branding issue.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Now, Cort, I have answered all of your inquiries as to what I am referring to and what I've said. I'd also like to reiterate here that everything I said was in a post that addressed the circumstances surrounding the XMRV paper and the CAA response to the paper and to the WPI. I've also suggested to a CAA board member that he allow us all to make our comments and that he take them to the next board meeting to see if there can be any kind of reconciliation between perception and action. You have announced on several formats that I am not interested in being fair, and that I only mention S. Vernon once and can't find anything nice to say about her. You were incorrect on the first count and failed to take into account my repeated statements that my mission was never that of "reporting" the entire good/bad history of CAA, on the second count. My entire blog was directed at the post-XMRV fallout, and I am not a reporter.

Let's end this now. It's one thing for you to point out the good works the CAA has done. I think that's fine, if that's the way you feel. But there is no sense in making it personal. It's silly.

We've managed to get a working rapport with the CAA board, and whether anything ever comes of it remains to be seen. But that was the entire point.

Khaly

 

[JayS]

Cort, obviously you want to try to remain 'objective.'

There would be no reason not to want to.

But, due to extenuating circumstances, it may simply not be possible to retain objectivity on this issue at present. The criticisms exist for a reason, a reason that looks valid to me, though I can speak only as one who is new to much of this after 10 years spent mostly bedridden.

The CAA may change course and move in a direction many can find positives in. At present, they're a punching bag, for what appears to be fairly good reason; and your attempts to remain objective are, strangely, almost seeming defensive.

In this climate it appears folks may be on the correct side of the discussion--unfortunate that there has to be a 'side'--even if they're not being 'objective.' Speak up for the CAA all you like, but...is it me, or are you repeating yourself more than a bit, lately? And I'm not sure they do a good job of responding to what's been written over the past few days by Khaly, Mary, et al, whose blogs, specifically, stand out recently. I would hope you would agree even if you find yourself in disagreement with some of what you see written.

I honestly think the best result, in the here and now, won't be achieved, as the group of patients we are, by spending much time focusing on objectivity. Yes, I know what that sounds like, how that reads, how wrong the very idea seems as written. That's not a permanent view, mind you, but an honest one. For the here and now, when we need grease even if we won't get any without a wheel that needs to be even squeakier, so to speak. When can people collectively drop what I would charitably describe as a chip on their shoulders?

When something changes, for the better. And at that time I would call for objectivity as loudly as anyone. Right now I want the CAA to know that even if they intended no slight towards WPI, it came off that way, and to a lot of people. That's not supposed to happen given that they're supposed to be the ones who are supposed to understand PR. Yet it seems like they have no idea how what they write (Xplained, etc) and what they do (Faces) is actually going to do, how it will influence perceptions...or even if it will matter, vs. being relatively irrelevant, in spite of the best intentions and good info...

...that nobody really gives a sh*t about. That's where Hillary Johnson stands out as the best voice I can think of to impact decades of popular indifference, scorn, and worse. We need the skills she brings to the table now more than ever, even if I thought you were right in criticizing her a few months ago due to what I perceived as unnecessary harshness. That was then. Things have changed.

You have a great site here & have done some very good work. But a knee-jerk defense of the CAA? We get it. Really. But the big picture has changed, shifted, grown. If we all grow with it, maybe the CAA can also. If not, then perhaps even the harshest criticisms have merit that you may be unwilling to consider at this time.

And in a world where personalities inform the tone of discussions perhaps more than they should at times, I would suggest the criticisms might be best viewed as professional, not personal. All the best possible intentions may be present. But something's not working as it should if such a disconnect is present.

I could be encouraging a conflict of interest, I don't know. But outside of ethical considerations? Khaly, I know I should probably answer this elsewhere, but I've been unable to write for days, so...

I'd want to see the CAA address the remarks of the Teitelbaums, Palls, Guptas, Marshalls, et al, and let them know there is a contingent that finds what has been said to be unhelpful at best, and to perhaps consider how their comments may resonate if they wish to issue statements that invoke XMRV while still promoting their products, services, and theories, which of course they have the right to. I'd like to see the CAA ask Dr. Hyde if maybe there was a better way to phrase his rather harsh remarks from a couple of weeks ago. And I'd want to see, if not a partnership per se, at least a professional and ethical cooperative spirit achieved with WPI to facilitate cohesive statements and dissemination of relevant information. I may have missed something that's already happening or being worked towards in this regard, so, if so, apologies for the redundancy. Otherwise...

...does sake go well with turkey?

 

[Advocate]

Hi Khaly,

>>>There are no grants for any XMRV related grants.

Do you know if WPI applied for a grant?

I thought the CAA did a better job of choosing projects to fund in the last couple of years than they had in the past.

But if the WPI did apply, I wonder why they didn't make the cut. Maybe the CAA thought that the WPI had enough money and other research needed the funds more?

I agree that the CAA badly mishandled the WPI findings. From what Cort says, it sounds as though the CAA will try to do the right thing in the future. I think you were right to point out what they need to do, and Cort was right to point out the good that they have done.

I have my fingers crossed.

 

[anne]

On some FB post, someone asked Andrea why they didn't apply for a grant from the CAA) and she said they were turned down for more research into XMRV.

 

[Cort]

Thanks for all your comments. I agree that the CAA has not responded particularly well to the XMRV findings. I've said that several times in several posts and Khaly you really do bring up some good points in that blog and honestly I think they're probably looking at it very carefully - and it will be helpful for them. (You might notice that they just offered an apology).

Khaly, I apologize for saying that you're not being fair. It is certainly essential that the CAA get the message from the patients and you did a very good job of presenting the concerns out there. That's very valuable! I very much appreciate the fact that you're interacting with the organization rather than simply bashing it; thats something that's been missing on both sides.

Basically the history of the CAA and its critics so far as I can tell has been that the critics criticize loudly and the CAA simply doesn't respond. This only ratchets up the level of criticism when advocates feel they aren't being heard.

To some extent my tone results from weariness. I see the CAA doing alot of valuable work but I hardly ever see that represented. I very sincerely believe that a strong national support group is absolutely essential for us. I will say it again and again - this group is doing valuable work! Maybe that's being defensive but if we don't have a discussion that weighs the benefits and cons of that group we run the risk of running them into the ground.

The path to success that I see is for the CAA to become more open and interactive and for us, as patients, to acknowledge the things they have done well and to ask them to change the things they aren't doing well. What I think we need is a discussion - which your blog helped start.

 

[Cort]

Sorry about the Vernon mistake. Dr. Vernon was referred to three times - my apologies.

However the third time was to connect her to Dr. Reeves. The research the CAA is doing under her direction, however, also has little to do with Dr. Reeves focus on CFS; it certainly has nothing to do with sexual abuse, allostatic stress or cortisol; they are very different researchers and have a very different research focus. She's demonstrated that for the past couple of years and I think we should give her the benefit of the doubt. I don't think she should be 'branded' with Dr. Reeves or solely identified with the Empirical definition. Perception is important.

 

[anne]

[Never mind. Thanks, Cort.]

 

[Khalyal]

Cort

Thank you, Cort. It's important that we discuss all of this without personalizing, I appreciate it.

Sorry about the Vernon mistake. Dr. Vernon was referred to three times - my apologies.

However the third time was to connect her to Dr. Reeves. The research the CAA is doing under her direction, however, also has little to do with Dr. Reeves focus on CFS; it certainly has nothing to do with sexual abuse, allostatic stress or cortisol; they are very different researchers and have a very different research focus. She's demonstrated that for the past couple of years and I think we should give her the benefit of the doubt. I don't think she should be 'branded' with Dr. Reeves or solely identified with the Empirical definition. Perception is important.

Here is the context:
Dr. Suzanne Vernons ties to the CDC and to Bill Reeves in particular have come under heavy scrutiny, and I dont think the sense of unease has ever been appropriately abated

So, yes, perception IS important. That was my point....
Khaly

 

[Cort]

Absolutely agree. Its a big question marking hanging over her - which is inevitable given her background. I guess this is really just a natural part of the process of the patient community figuring out who Dr. Vernon is. Its understandable people would be leery - thats for sure.

 

[starryeyes]

I want the CAA to take on HHS and insist that the CFSAC recommendations are acted upon ASAP.

 

[Khalyal]

This is a great first goal for the CFIDS Assn if it wants to prove itself as our advocate: Get the CFSAC recommendations acted upon NOW!!!

How can we bring this to their attention?

Jennie Spotilla, chair of the CAA's board of directors, contacted us over at my blogsite and at Dan Moricoli's, to let us know that they were following our conversations and collecting our responses. I am supposed to email her all of the responses that are collected outside of the blogsite, such as here. I am collating everything over the weekend and getting them to her on Monday.

So we can certainly put this on the communication that will go to her.