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

[Marylib]

Proof is in the Pudding

So whatever the history, whatever the motivations, what matters now to me is if CAA throws their support into WPI and the replications of the findings.

I do not understand why a patient advocacy organization is not using this development to full advantage, rather than holding back.

Throwing one's full support does not mean one says "yes XMRV is it! -- the alpha and the omega!" Throwing full support means cheering on further research into XMRV, regardless of the ultimate outcome. Good loud cheering.

Does the CAA not understand that this is a watershed moment that could be used to further unify the CFS community and draw attention to its needs -- no matter what the final outcome?

As far as Hilary goes, she is a writer. She writes. She stirs the pot. She is not an advocacy organization, requesting donations.

 

[starryeyes]

CAA and NCF

Throwing one's full support does not mean one says "yes XMRV is it! -- the alpha and the omega!" Throwing full support means cheering on further research into XMRV, regardless of the ultimate outcome. Good loud cheering.

I completely agree. I have to say that overall, I think the CAA has made more positive moves in supporting PWC by splitting from the CDC but I am not pleased with how they are responding to the XMRV research.

As for the NCF, I've felt that in the last couple of years they seem to have lost their way. But then again, I thought I'd heard that the WPI thinks that XMRV fits in with Ciguatara Poisoning so maybe the research from the NCF will end up dovetailing nicely with the WPI if the NCF is willing to play nice.

The thing I've come to realize about the NCF after finding out from them that they do not support the XMRV finding is that if they had found it, they'd be shouting "BREAKTHROUGH in CFS" from the rooftops. You know that they would. Ditto for the CAA.

 

[Cort]

Boy, Eucalypta, I hope you can find some evidence supporting your claim that CFIDS Association is spending millions designed for research to refurbish their offices! For one, their Research Initiative raised $1 million not millions and although I've never been to the CAA's offices my understanding was that they were pretty threadbare. Nor do you get an award from a nonprofit watchdog group for turning over a high percentage of your funds to directly work on the issues by spending millions on refurbishing your offices or padding your salaries.

I understand the dismay that the CFIDS Association does not appear to have jumped on the XMRV bandwagon. But I disagree that they are trying to hamper WPI's efforts In the kind of environment we're in right now and there's so much excitement it's difficult to inject a note of caution without coming off as a party pooper. Yes, it would have been nice to see the CAA be more of a cheerleader and I think their unwillingness to play that role has hurt them.

But that's the way they've always been. Particularly with research findings they've always played a wait and see role. My impression of the CAA is that they are rather cautious as well as a very professional organization. That professionalism will serve us well if XMRV does turn out to fulfill our expectations. It does not work well at rallying the patients.

Its true that the ME/CFS community has been burned several times by research that didn't pan out as fully as we'd hoped. The most recent example was Dr. Montoya's initial study that showed a complete return to health from a group of really disabled patients taking Valcyte. The second bigger study completely flopped! They're thinking about that and about that kind of select first group of patients in the Science studies. I think they're taking Dr. Mikovits statements with a grain of salt. They're being quite cautious in our time of glory - more cautious than many of us would like.

I too would have liked to see the CAA be more enthusiastic - one of their roles is to be something of a cheerleader for us and give patients hope. I think they missed an opportunity here to do that but I don't question their motives at all. There's no reason to think that they won't to jump on board if XMRV turns out to be it for at least some of us.

I would also say that it is a time of great opportunity but that also brings with it the other side of the sword possibly big pitfalls. This time we really did capture the attention of the world. God forbid this doesn't work out! I think it will.

 

[Roy S]

I thought I was too exhausted, too spent and too fried to laugh.

I'm not! Thanks for that!

Laughing ruefully...

koan

Thanks, at least someone got my joke. This week has been a bit stressful.

 

[MEKoan]

Good morning all,

I meant just what I said and no more. It is unwise, unfair and immaterial to speculate on another person's thougths and feelings. That said, I have done so myself with Reeves, Wessely and White.

In my experience, as an observer from outside the US, I have been aware of Hilary Johnson bearing the standard in this illness since the Rolling Stone article. I am unaware of what the CAA has done. Thanks, Cort, for filling me in on some of that.

I'm going to try to stop speculating on what Reeves, Wessely and White are thinking and feeling. I never felt good when I did it and it is immaterial. Their actions and words are material.

This kind of self control is not easy, I know that.

Wish me luck!

Peace out,
Koan

 

[anne]

Very good points Cort. I think my issue with their response, here, was that it did not seem to be politically astute, and given some of their job is political, it troubles me. Unfortunately, so much of the political job of advocating for CFS is discrediting the words of the CDC, lest everything think we are all victims of sex abuse who can't handle stress. And Reeves' words in the Times were startlingly negative, discrediting the study and discrediting Science for publishing it. And when our advocacy organization--out of caution, certainly--echoes some of those words, it gives them all credence. Suddenly it's the CDC and our own association implying there's something suspicious about the sample.

Instead of trying to protect us by dampening expectations, I'd rather they protected us by working to frame the debate--by working externally instead of internally. There's a way to do that while still being cautious. Does that make sense?

If they are going to be too cautious, if they are going to focus on "constructing a tarp" instead of constructing a message, I think their ability to function an advocacy organization becomes questionable.

 

[Cort]

I think Hillary's feelings towards the CAA are pretty clear. Perhaps I should have said she has demonstrated a long history of utter disdain towards the organization. My reference to her occurred because she was highlighted in the first post in this thread. She appears to be reconsidering some of her positions or at least her wording of them - in my opinion that's good.

She's a very powerful writer. I think everybody - from Hillary to Kim to Annette to all of us - wants to see this disease solved. They may be going about it in different ways or have different viewpoints about how to get there - but their core motives are good.

If we could just start from that place I think we'd be doing pretty darn good.

The CAA can be a bit tone deaf at times. Its clear to me that this has hurt them and their membership. They miss opportunities to insert themselves gainfully into important issues. Take the Physician education course they created; that course has taught 28,000 physicians! Its been a great success - yet you'd never really know about that from them! They're just not that good at that kind of stuff. They're getting better for sure - the Facebook was a good start but they haven't done well - at least with the public - with the XMRV finding and thats important. Its like a politician honing their message - they need to hone their message more.

I have trouble with this 'echoing problem'. Its possible that Suzanne Vernon made that statement about replication before Dr. Reeves made his. She also wasn't the only one to make a statement like that. Dr. Reeves said the study wouldn't be replicated; Dr. Vernon said we need more information to ensure that its replicated properly. She also said this could be the 'Game Changer" we've been looking for. That's been totally forgotten. It is about knowing your audience and what their listening is. They couldn't hear what she was trying to say.

They're all over the CDC and yet they missed an opportunity with some of Dr. Reeves comments to score some points there.

That said they're doing an awful lot of good work. I just learned more about the International research Network that they're building - its absolutely dynamite stuff. It's really good. My impression is that their public relations 'top' is lacking but their work under the surface is going well.

 

[MEKoan]

If we could just start from that place I think we'd be doing pretty darn good.

I agree!

Thanks for that!

 

[Warbler512]

Grays Hats on All - 1

Besides his journalism overall, I give Cort credit for one thing, even if I don't always agree 100% - trying to remain level headed, which isn't easy in our thing and never was. Perhaps I fail here as well.

I respect Hillary's work, and most of her passion, when that doesn't boil too far over and sometimes it has. I don't know all of why HJ dislikes CAA to this day, though Oslers , by which she was as close to the bowels of the beast as most of us get, gives many hints - just start from the index on (CAA and funding) and trace back - one being, who pulled the plug on DeFritas and Martin after funding them? I don't know what Dr. Bell feels now (since he helped with the "Face" exhibit, which I thought was ridiculous), but he's pretty much quoted as saying he felt CAA cut DeFritas loose after a point to retain and build ties with CDC/NIH, who of course were already hosing us. Suddenly, after hammering DeFritas for replication, Grossberg gets a seed fund and CAA doesn't care how long takes or what's replicated early on.

This was still with Iverson on board, though I doubt Iverson relished doing so. It hindsight, it can be argued that CAA was a victim themselves as they tried to learn from mistakes in the game and swung far the other way - being pressured and played by Uncle Sam all along. In the end, Iverson himself joined DeFritas as a casualty of political "needs" as well.

From reading HJ's site, there's also seems some contention over who should share credit for blowing the whistle on the first funding diversions. In her view, she played a crucial role too, before Reeves came out and pulled his little stunt. I've never heard this side before. In the end, I'm sure they were both involved; perhaps HJ feels left out of the picture, and especially hurt because CAA and Reeves got the spotlight and this is where Reeves really started playing the CAA himself.

And even if Walter Gunn was part of that pressure to distance from DeFritas and Martin, he obviously went as far as he could've possibly gone to give them a chance . He was our best if not only ally in CDC, and it cost his career too. Reeves, though, as Cheney said, was never our buddy.

 

[Warbler512]

Grays Hats on All - 2

Cort is also diligent to at point out the shortcomings of the CFSAC. Whether the CAA is pushing them, I don't know, but in May (when I first started to really tune in, literally), only Jason and Oleske really came close to challenging CDC. In the end, they just couldn't bring themselves to say then and there, get rid of Reeves. It could be argued there, too, that the immediate counterargument - if you don't like CDC's plan, state yours precisely - had some merit. What they all said this week, I have to see the rest of the tapes.

By their nature as grant applicants, rather than grant approvers, CFSAC is obviously compromised, and Reeves has taken them for a royal ride too. Klimas, Jason, etc. have their names on the CDC's training courses, as does Linda Bateman whose sister died of this damn thing. You could see in May for Oleske and Jason that playing politics really sucks for them and with Reeves out of the room, it's a different ball game. You could see Klimas and Bateman coming out much stronger this week.

 

[Warbler512]

Grays Hats on All - 3

As for NCF - so much for Rich vK's statement that they among others can't remain silent in all this XMRV business, remarkably, NCF has done almost exactly that. For all their hooting about finding a virus, when someone appears to finally have (we'll see) - absolute silence. Check the web site - nothing. In fact, the first I heard from them about WPI, they were anonymously blasting the IACFS conference there.

That could be interpreted a couple of ways. Many would say it's because NCF didn't find XMRV themselves. It could also be that their research dovetails with this somehow, and they just don't want to get caught in all the political crap. It could be they really do disagree.

Their research is intriguing. It may be going after stopping some of the processes by which this disease destroys the body. Blue-green algae toxins: this could be seen as a different "puppet master," or even another one. Dr. Martin uses a ciguatera test in conjuction/in-place-of a virus culture and goes through a lawsuit with U Hawaii over that test in getting a world patent. EPA also gets a world patent. What struck me about their "green paper" on Oklahoma, of all places, is that U. of Oklahoma (Tom Glass, et. al.) is the only separate major entity Martin's CCID ever allowed in on his work, after hiding whatever he had from everyone else.

If Byron Hyde, though, is the only other person on the planet who has looked at the "neoplastic (whatever that means)/malignancy" aspect of CFS/ME, I'd love to know his take on NCF's current work. (There, Cort, you have another assignment!)

I have no doubt NCF has some medically and technically brilliant people working for them - but I don't know how anyone can be "proud" to be their (regular) member. First, hate takes precedence over science as their fundraising tool. "Passion, not Bashin'"? If HJ is over the top at times, NCF is like that extreme on an enclosed Bose system in continuous reverb. They take a lot of pride in telling it like it is, but as for many individuals who do, that means needlessly cutting people to shreds, and Jill McLaughlin's just for starters. Everyone's name's in black. One second your a hero, then you're a part of the problem, if not outright villified, then back again, however you fit what they wish to say at the time.

Second, NCF may not be getting the "millions" that Kim McLeary is stuffing into her purse as CEO. (I agree that salary's a little high given the years and stakes for her non-profit). On their ultra-efficient budget, though, they do a horrible job of connecting the dots for us, let alone in some way that doesn't require a medical degree. Just what does all this algae stuff mean in the big picture? Was everyone at Tahoe swimming or breathing blue-green funk? Did the North Carolina orchestra eat bad seafood? Was rural Lyndonville full of algae blooms that people were breathing? Are we all being food-poisoned? Is CFS/ME a global warming phenomenon?

'Thing is, NCF isn't going to tell us - we have to pay up and wait. First Martin's a big deal. Then, except for ciguatera, he wasn't doing anything of note - just, in passing, working with the FDA and insect vectors. Then, PIV is the "new paradigm." Then that's gone, and we're onto algae. Years ago, the "truth" was Don Scott and Common Cause, of Visna-Brucella fame.* But NCF only cares about us patients, not their image. It's one thing to follow the science. When you're asking for money and doling out journalized hate-mail though, it's a poor way to do business. If it's all a cover to keep Uncle Sam from shutting them down and stay productive and save lives, it's debatable how well it really works. Maybe it's the best counterintel' cover since the Manhattan project - I don't know.

 

[Warbler512]

"Gray Hats" 4

Now, you can take this for a grain of salt or as you wish.

The Scotts of Common Cause, supposed Canadian ex-pats with the "truth" as NCF once put it, are curious, and is what you can "learn" by following their trail. Is the Brucellosis Triangle, etc, verifiable? To a point - but very soon you're into the realm of AIDS and CFIDS/ME being manufactured in a laboratory, and it's quite a roller-coaster. It's mildly interesting that Peterson's XMRV ancestry starts with Moloney-MLV, only because Moloney is one of those whom Common Cause calls out with Brian Mahy in the earlier CFS funding scanda. But, by Common Cause, everyone else is guilty, including Robert Gallo, Hillary Koprowski, Garth Nicolson as creators of HIV under the Special Virus Cancer Program, etc. etc., sheep virus + cattle bacteria = AIDS. (As bizarre, Nicolson's bunch in Huntington Beach had Scott under their wing for a while - Martin, too.) Go that route - including the book The River, which admittedly must have really gotten under some skins for the medical world to stand up and defend themselves against it - and you're into the realm of conspiracy theories and whether AIDS and CFS/ME was accidental, on-purpose, etc. Was there a virus cancer research program under Nixon? According to a black lawyer/rabbi who took the U.S. to court for creating HIV, it appears so. Is there a U.S. patent for the AIDS "cure" he supposedly took (a silver compound that electrocutes viruses in the body! - wow)? Actually, in the USPTO, I kid you not, there is; you can look it up yourself. (The inventor has moved on to skin cream.) Said lawyer/rabbi and Common Cause also believe we're under the domain of neo-nazis and it's part of a conspiracy against Jews, AIDS for blacks, and CFIDS for extra white people overpopulating the planet. True, I have yet to see or talk to a black person with CFS/ME. Nevertheless, there's a lot of very questionable stuff here - some of which, Dr. Martin, a question mark among question marks, heartily endorsed (Emerging Viruses by a dentist who had a heavenly revelation after pulling all this "truth" out of a Boston library).

Obviously, there's "truth" here mixed with Boloney if not outright disinformation from whomever. How much it's worth anyone's time to spare, who knows.

Well, Cort, that'll add to the "irreverant" aspect of your site. Just keep us on the straight path, will 'ya? And BTW - look forward to what you have to say on NIH.

 

[PoetInSF]

I suggest that we have a serious discussion about the CFIDS Association of America and their role at the dawn of the new XAND epoch.

There is no such a thing as XAND yet. The study hasn't been replicated yet even with exact WPI criteria, let alone general CFS population. CAA has healthy approach, given all previous works with initial sensational claims, only to fizzle out at the end. I'd have problem if CAA were to jump on it with unwarranted enthusiasm.

 

[PoetInSF]

Very good points Cort. I think my issue with their response, here, was that it did not seem to be politically astute, and given some of their job is political, it troubles me.

Politics is necessary, sure. But advocacy is one thing, putting science ahead of politics is another. Personally, I think CAA will get more bang for the buck in advocacy/lobbying to secure more funding for CFS, but I'd hate to see CAA degenerating into another Abigail's Alliance that is all politics and no science. That's when I'll stop supporting CAA.

 

[anne]

Nothing I have said suggests putting politics ahead of science, nor have I ever suggested they abandon science for the politics. What I am saying, simply, is that they must think of politics as they discuss the science, that's all. You seem determined not to listen to me. We are not going to convince each other, and so I would prefer you didn't engage with my comments any more.

 

[Marylib]

For Poet in SF

Hello Poet,

I need to rise to Anne's defense. This woman has enough to deal with in her life without supposedly "like-minded" folks in a forum like this calling her on the carpet.

I do not mean to be calling you on the carpet, either. But I request that you show her some respect. It is only kind and decent.

Marylib

 

[citybug]

I haven't paid attention to the CAA in years. Today I sent them an email asking them to give research money to WPI and point out which congress people we should write to (then I found that on their site). I think PWC should be telling them what we want now. They're lobbyists and now we need lobbyists. They do have the XMRV findings on their home page. I think they spoke against Reeves at the CFSAC meeting.
Now that there is something for everyone to get behind maybe it can happen. The CFSAC meeting was more together than I ever imagined. It's only been a couple weeks since the announcement. Maybe it's possible more groups can get it together too.

Kathy http://www.iGive.com/WhittemorePeterson

 

[andreamarie]

Since I'm less than a week old, I will write ONLY about what I have experienced personally. When I first was dx with CFIDS, I joined the Mass CFIDS association. I was stunned by the first newsletter, however, which was done by Gail Kansky. I had been doing an award winning newsletter for the Crohn's & Colitis Foundation and Gail's was so full of obvious medical errors, etc. that I was shocked. Negative is not the word; for someone newly diagnosed it was terrifying. Fortunately, I knew most of it appeared to be "made up." Mass CFIDS did very well for a group with no money run by very sick people. We had speakers like Nancy Klimas, etc. Then Gail Kansky started attacking the CAA and anyone at Mass CFIDS who didn't want to renounce them. It got VERY ugly. Dr. Komaroff, who always spoke at one meeting a year, looked directly at Gail, and said that attacking members is destructive. I know; I was sitting behind her. Ultimately, Mass CFIDS ended it's meetings and newsletter; Gail had a lot to do with it's demise. They still have a decent website. The few times I spoke to her years later, she was still filled with hatred. There are ugly stories that I can't repeat because I never was sure what was rumor, etc. But I can say, having worked for a successful nonprofit for ten years, the NCF is a highly destructive organization. The Kansky's still are the NCF; the address is their home.

 

[Eucalypta]

Being that 'proud' regular NCF member your probably referred to I can only say that I as a new immigrant to this country did some research and comparison to which organization I would like to pledge a yearly contribution to.
I did read the accusations that were made towards the CAA and having someone aboard that was so intertwined with the CDC did not sit well with me. To me the CDC is the most untrustworthy organization I ever came across. So I chose the NCF.
I liked the fact that they funded their own research and that every penny you donate is being spend towards that effort. They have been nothing but helpful to me who needed a lot of information and guidance through the US health care system and physicians.
That's my only explantion of why I like the NCF over the CAA. And to answer Cort; the accusations over the nice offices stem from the NCF and did hint at the CAA and the CDC.

I know nothing of prior politics that have taken place before I moved to this country, things that have been said and what people did 2 decades ago. I based my decision to donate to the NCF solely based on what I learned that they do today. The CAA didn't seem very much involved in research but more in politics.

Another thing, totally unrelated, I see many remarks towards the Tahoe group. I know there was an outbreak but is it the consensus that only that group is the 'real' CFS group? if that's the case that what about the people who were ill with ME in Europe before the Tahoe outbreak? I'm one of them. Maybe I misunderstood but I like to know before making any more funny and off remarks.

 

[anne]

By no means on the Tahoe group. They and those who share their characteristics are a specific subset.