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

[CBS]

WHAT is the CAA doing?

One of the most surprising themes that was evident by the questions posed is how much larger and mightier the Association appears to some people in the community than it really is. Our Board is comprised of 14 (unpaid) volunteers, each of whom has deep personal connections to CFS and the Association’s work. Our staff is just 8 people, working from very modest office space in Charlotte , N.C. Based on the feedback I received, the expectations that the community has as a whole for a single organization, the CFIDS Association, are vast. If anything, it’s clear that the CFS community needs more organizations taking complementary approaches to the complex and interconnected challenges of CFS.

Jennie (can I address you in such a familiar manner? Everything else seems a bit odd now that I've read so much of what you have written),

Thank you for this response.

I've been thinking that there are many needs in the CFS community and that expecting one group to do it all is unreasonable. Perhaps one question this brings us to is not "How's the CAA doing?" but instead, "WHAT is the CAA doing?" And what else needs doing?

I expect that just as tension exists between individuals, there will be tension between patient advocacy groups. So long as this tension comes out of honest differences and good faith efforts I expect it will be a good thing.

Shane

 

[jspotila]

My Pleasure

Khalyal, islandfinn, ComeBackShane, and all,

I thank you for your kind words, your persistent engagement with advocacy, and asking great questions. This is what we should all strive for.

And you may call me Jennie, jspot . . . I seem to be acquiring monikers here! I'm just happy to be a part of the dialogue.

 

[fresh_eyes]

Hi jspot . (The many monikers are a badge of honor, I think.) Thanks from me as well. I think you're really onto something about people perceiving the CAA as bigger and more powerful than it is. It seems in some ways that CAA has become the victim of its own success in branding and positioning. Perhaps moving forward we could all put our heads together on how to clarify what CAA is working on (research, primarily, at this point in time?), what other groups (and individuals) are working on, and whether there are ways we can support one another and make the movement more effective as a whole, which is surely one thing we all want.

 

[Cort]

My understanding is that the membership dues have basically only gone to support publication of the Chronicle and that the CFIDS Association runs its day to day business based on donations.

This has really confused some people who have asserted that drop in membership levels over time has damaged the Association's ability to do business . I certainly cannot speak for them, and of course, the drop in membership levels can only hurt, but looking over the CAA's annual reports some time ago my feeling was that the CAA has been quite effective in getting donations over the past 10 years.

 

[Dolphin]

Hm, was the membership fee $35? If so,

Membership Dues 118,672

118,672 / 35 = ~3390.6

Don't know why it doesn't divide evenly unless I got the fee amount wrong...

But it sounds like they've done away with memberships. I paid membership for one year but it didn't really seem to be any different from not being a member except for the print mailings, which I chuck anyway and go online to get the digital version if there is one.

Who uses paper anymore? As a donor, I actually hope non-profits don't spend any of the money I donate on sending me anything in the mail!

Another interesting number might be number of donors.

Membership was more if outside the US (not sure what it was for Canada).

However, a lot of groups have the problem that people will often pay their membership less regularly than every 12 months.

In Ireland and probably in lots of other places, not everyone is on the Internet.

 

[hvs]

FWIW, I have started a "Part II" to this thread here.
Thanks to everyone who's made this discussion so smart and important.

 

[justinreilly]

Cort,
I think it is fair to say that Hilary Johnson has done more to further the cause of awareness of ME/CFS/CFIDS, as one individual, than the entire CAA with all its member over the entire course of its existence. Credit where credit is due.

Well said.

 

[justinreilly]

Hi dkesh,
[R]ight now I'm longing for a national organization that is more in touch with what the sickest patients are thinking, feeling and wishing for. I long for a national organization that will speak for them.

For example, has the CAA written any letters to the editors of major newspapers that capture the excitement that many patients are feeling about XMRV? Have they pointed out that the WPI study had built-in XMRV replication by the Cleveland Clinic and the National Cancer Institute? Have they publicly and forcefully expressed outrage that Reeves Disease criteria (that was one of my favorite moments in yesterday's hearing) may be used to try to replicate the XMRV results?

I long for an organization that will use patient outrage at how they've been treated to get a congressional hearing on the unscientific and malevolent CDC and NIH psychiatric approach to CFS.

I really don't want the CAA to fail, but I think they are missing the boat. And then what will we do?

I share your dream!

 

[justinreilly]

Good point Advocate. I left out talking to editorial boards in my long article because it was getting too long. The Washington Post needs to be cattle prodded and the people that could do it are there for the CFSAC meeting. Everybody in Washington reads the WP, and it has influence.
But Kim McCleary's salary last year was only$177,517.00. We shouldn't expect too much.

Excellent post, Roy. Thank you.

 

[usedtobeperkytina]

I think we need someone to rally the troops behind public awareness, media attention, than government lobbying.

We need a campaign for public acts, demonstrations if you will, corporate sponsorship, or something to get public on our side. Congress will respond to media pressure, in my view, rather than lobbying. Every other disease needs funding. And there are so many knocking on the doors of politicians every day. But get public demonstrations (something unique, not just a ribbon or "marching" in Washington) to bring media attention. Then the real pressure will be on.

We have not had the media attention. We have no corporate sponsor (such as Campbell's and the "Go Red" campaign) and we have patients with a lack of direction of what they can do to bring this illness into the public's radar.

Tina

 

[justinreilly]

I think we need someone to rally the troops behind public awareness, media attention, than government lobbying.

We need a campaign for public acts, demonstrations if you will, corporate sponsorship, or something to get public on our side. Congress will respond to media pressure, in my view, rather than lobbying. Every other disease needs funding. And there are so many knocking on the doors of politicians every day. But get public demonstrations (something unique, not just a ribbon or "marching" in Washington) to bring media attention. Then the real pressure will be on.

We have not had the media attention. We have no corporate sponsor (such as Campbell's and the "Go Red" campaign) and we have patients with a lack of direction of what they can do to bring this illness into the public's radar.

Tina

I agree, Tina, that public awareness is #1 and it should be dramatic. Corporate sponsorship. I like that!

I do think gov't lobbying is important also, because just the fact that we get sooooo little is a glaring injustice that CAA should be able to get some Members interested in, plus of course plowing money into coffers of key members who get things done for us. We shouldn't have to pay, but this is how it's done, so might as well do it.

 

[starryeyes]

I see no point in asking the CAA to do anything for us until they remove all of the harmful literature they have online that teaches our doctors and other medical professionals to use CBT and GET for CFS. If they ever remove all of these materials the CAA would also need to reassure us that these materials and/or CBT and GET were no longer being used to "educate" doctors about how to treat CFS.

A retraction and explanation about how they were very wrong to ever promote these "therapies" to us and to our doctors would be in order too.

 

[talkingfox]

well said Teej.

 

[justinreilly]

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.

Wonderful distillation of a key problem at CAA. Thank you, Lisette

 

[justinreilly]

re: Faces CDC campaign. 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.

It was just another excuse to waste money on putting out the milquetoast message of 'you tired people should really be getting more informed and looking for more help to make you less tired.' More useless CAA and CDC activity.

 

[justinreilly]

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.

Of course they don't support a name change. They know for there to be any traction to a push for a name change, they have to get the ball rolling by using the name themselves. Instead they've gone backward to using "CFS". Everytime they say "CFS" is a slap in the face of us ME patients. et tu Brute.

 

[justinreilly]

Neither the CAA or the NCF have done advocacy. I know because I have two other diseases and saw how advocacy works. When I was diagnosed with Crohn's disease in '65 I asked my doctor to bring me a textbook. There was less than a page and most of it described the patient as having a "passive mother" and other psychiatric nonsense. I had just had my blood supply replaced twice, had part of my intestine removed, had a positive pathology report, but it was still a "psychiatric diagnosis."

The "Crohn's & Colitis Foundation" (that was not the original name: Crohn's had eleven names) formed in '66 and started with an alliance of a few gastroenterologists and savvy board members. THEY SPENT SEVEN YEARS WORKING ON DISPELLING THE MYTHOLOGY. I did see a psychiatrist who told me Crohn's was NOT a psychiatric illness and I cried for half an hour (he really must have thought I was nuts) because I wanted him to say it was so he could talk me out of it. I had had five near death experiences in three years. When I went into remission I kept the Crohn's a secret because people were not getting hired for jobs because it was assumed they were crazy. Young doctors I meet now are stunned when I tell them this.

Same thing when I got interstitial cystiits, which I'm sure is related to CFS and FMS. Urology texts said it was a psychiatric dx caused by female hysteria. The Interstitial Cystitis Foundation pounced and got the textbooks changed and recruited urologists. No one thinks you're crazy anymore but there is only one good study....

I did p.r. and placed PSA's for the Crohn's & Colitis Foundation. Advocacy is not for the patient: it is to wake up the world around them to the patient's situation. E.g.: The most riveting advocacy breakthrough in cigarettes was having the former Marlboro Men who were dying of lung cancer do PSA's on TV. These virile cowboys were now deathly ill and looked it. They were attached to their oxygyn machines. Some had died of lung cancer and did voiceovers. Obviously, this was terrifying to anyone who had lung cancer but that was not the focus.

This is what CAA's advocacy should be like. Thank you, andreamarie.

 

[justinreilly]

I don't think without more information we can blame Vernon for the definition. She worked under Bill Reeves doing CFS--she probably did some part of the research or something, but that's her job. She was delegated something and she did it. We don't even know if she had any idea what the whole of the project was. Her place as the second-to-last person on the study implies her role or status was insignificant.

She vas just fvollowing der orders.

 

[justinreilly]

re: CAA:
We are in a fight for our lives, and I don't have time for excuses on why this can't be done or that can't be done... I'm weary of "can't".

Khaly keeping it real.

 

[justinreilly]

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.

Emphasis added.
This says it all. When will that 'at some point' be when CAA goes toe to toe with CDC and NIH? I'm not holding my breath.