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

[Cort]

Dr Vernon could have come out after the Dutch study and said "this study is of no value to advancing the understanding of the neuro immune disease ME, as it used outdated criteria which at best has never been recognised as offering value anywhere in the world". She chose not to.

I understand that that's your opinion. She simply does not believe that that was the issue. That's her scientific opinion. Personally I think we should think about that. Is simply using the Oxford definition a reason to reject an entire study. I would say that in this context - no.

If the study had found just 10% positives or just 20% positives then I think you have a very good case saying "Aha - that's the Oxford definition at work. If they'd had more real CFS patients and fewer people who actually were depressed and didn't have CFS - then the number would have been 50%." But they didn't find any positive patients there or in the two other studies. Given that, for me I don't see the Oxford definition or any other definition playing a deciding role. For what its worth I don't think that she's right about her idea that the Science patients were very different. I think its all or mostly all methodology.

Time will certainly tell.

 

[gracenote]

Most ME/CFS patients are not dependent children. CFS hits more of us as adults. We are sick adults. On the other hand, I have watched breast cancer awareness grow. Women who get breast cancer are otherwise healthy. Suddenly they get a diagnosis that might be a death sentence. They have a tremendous amount of energy that gets mobilized and they have used that energy to make changes. Also, when friends and family hear cancer, their response is often immediate What can we do?

I am ill with ME/CFS and have been for 28 years. At no time have I gotten even a smidgen of the offer of help and support that my sister did when she was diagnosed with breast cancer. People were offering to raise money, clean her house, go with her to chemo, go with her to the fundraisers, bring meals. I saw this same kind of response with my sister-in-law when she was diagnosed with ovarian cancer.

I went with my sister to her chemo appointments, but because I was much more ill than her, she had to drive me! My sister-in-law was able to be more active while undergoing chemo than I have been for a long time.

We, as patients, don't have the energy. Most of us are no longer cute kids who got sick. ME/CFS will not kill us (quickly). No one feels like they can really do anything to help, or if they do help it won't feel like it's making any difference. Our problems go on and on and it doesn't seem like anything ever changes.

It's like there is no there there.

People want to help in ways that makes a difference. We are all more energized when we can see a clear goal, when there are obvious steps to take towards that goal, and when there is the possibility of actually someday reaching that goal.

Thank you, Cort, for being here all these years and for working hard for all of us. Thank you.

 

[Cort]

I resisted the temptation to respond in the affirmative when you said that if we thought you were in "la la land" we should say so.:Retro wink:

Thanks

The fact that you defended the article on GET/CBT for a long time before admitting you hadn't actually read it....then stated some criticism of it, gave me the impression that your loyalty to CAA was stronger than the facts warranted.

Its it's true that either I'd either never really looked closely at the SPARKS document or it never really struck me the way it did this time. It's a difficult area. Clearly tradeoffs were made; the CAA did the media campaign and the got the word out to the public that this is a serious disease - that can only help - but the treatment part of the SPARKS campaign was very conservative and that validated for me some of the anger and suspicions towards the CAA. I can see how Sarah would think, seeing that, that the CAA was focused on healthier patients.

On the other hand I think it was a judgment call. I don't mind debating whether it was the right judgement call at all. I think alot of people have legitimate concerns. What perturbs me are sweeping characterizations about the CFIDS Association, questions about their integrity, etc. My experience of them is that they are entirely committed to helping CFS patients and that they've made a positive impact in many different areas. Whether they're doing it the way I might want them to do it is to some extent immaterial to me. So long as they're making progress - and they are making progress in several very important areas - then I'm going to support them. I would never withdraw my support from that organization so long as they're moving forward in important areas even if some other areas are lacking. We have very, very few people working for us.

Change is possible - I think they've also shown that you and I can make a difference - that they can change. They took that article off, they created a new FAQ page, Jennie is taking comments back to them. I would be very surprised if, when the SPARKS contract is up, that they don't replace that information with the information with the physician education program they did for MEDSCAPE. On the other hand, there are things they're probably not going to change them that some people would like. You have to decide if that's worth not supporting them in other areas.

There are definitely holes. The treatment aspect is a hole. They made up for that in a big way with the physician education program but that information is still not on their website and treatment information for patients is obviously not what it could be.

Research - I loved their physician education program but my heart is in the research. I believe their Research Network with the Patient Biobank and Data Biobank and increased research collaboration is the most important thing going (other than XMRV). If XMRV works out it'll be that much more valuable. It's big (it really seems almost too big for a small organization with a small budget), it's innovative, it has vision - it should make a HUGE difference - they're shooting for the moon there - for that alone I'll be supporting them heavily for several years.

 

[starryeyes]

justin wrote: I do think that having Dr. Vernon speak out would give far more bang for the buck than her other duties. Obviously we disagree on this point. I'm wondering what others think on this issue including the Board.

We absolutely need Dr. Vernon to constantly speak out about how the CDC has completely betrayed us not just once. We need to see it on the CAA's website and in their newsletters as an ongoing issue. Because, it is ongoing. Or did the CDC suddenly change and completely back ME/CFS and we didn't notice?

 

[starryeyes]

This is my take on advocacy in CFS.

Last year I created a group on this forum that was designed to take the CDC's program on CFS down at the CFSAC meeting. I did everything that I believed the CFIDS Association was not doing. I used deliberately provocative language. I emphasized how important the goal was and what a golden opportunity we had. The CDC was about to present a draft of its five-year plan. If we could show up in force to get some media attention perhaps we could really get their attention.. We knew that ME/CFS professionals were going to be there and testify - we just needed the patients. I presented this - as it was explained to me - as a once in a decade opportunity to make a difference in the CDC's program.

I sent an invitation to everyone that subscribes to the newsletter - about 3500 people. I sent an invitation to everybody on the forums. I put a big ad on the front of my website.

I got 48 people. After that I pretty much stopped blaming the CFIDS Association for their lack of success at advocacy. I was looking back at old Chronicle that dated back to the time of the CDC scandal. It was right during the Congressional hearings on the subject. The CAA was able to get about 50 people to their lobby day that year.

It's not them or just them - its us as well! We have a pitiful record on advocacy. Dr. Peterson has talked about it in very blunt terms and its true.

I'd love to be there with bells on but I'm way too ill. That is the situation for many if not most PWC and if they are able to work that's all they are able to do. But I do appreciate your effort and I want to see the CAA do the same as you did. Why didn't they?

 

[Cort]

We absolutely need Dr. Vernon to constantly speak out about how the CDC has completely betrayed us not just once

I know that sounds like a good idea but I don't believe that that's how researchers work. Researchers do not get up in the media and blast each other like that. She would lose her credibility in the Research community if she did that. Dr. Mikovits has done some of that - she's basically questioned the integrity of some research groups - and that really isn't done much that I can tell and honestly it can't help her I don't think. Dr. Vernon is a Research Director; if she's going to be an effective one she needs to stick to the parameters of that job.

Like someone said its Kim McCleary's job to do that and she she did do that, as I've stated many times - and provided evidence for )) - over the past year and a half. You may have disagreements with the CFIDS Association stance towards the CDC before 2008 but it's really hard for me to see how you could have problems with them after that.

Dr. Vernon did her job with the CDC - she obviously provided the CFIDS Association with lots of inside material on the CDC, and they went after them very aggressively.

 

[starryeyes]

Thanks Cort for all your hard work on our behalf.

I have worked on other (really important) local environmental issues here in Santa Cruz, and I know EXACTLY what you're talking about. We were (and still are) under the threat of being sprayed with aerial pesticides here--to kill a stupid harmless moth. I got VERY involved in this issue, made a documentary film about it, and did my damnedest to rile up community interest about the dangers of that pesticide spray program. When the time came to act and really make our voices heard, it was ALWAYS the same 40 people who would show up. Everyone else that I spoke with (many whose doors I knocked on personally, exhausted as I was!) would show genuine interest and make sincere promises to help, UNTIL that moment when we REALLY needed them and then.... where were they? Good question, that I never got an answer to.

I don't do politics anymore because of this. Just too frustrating and too exhausting. But I really appreciate those who do, and will help out when I have the energy.

Awesome Dreambirdie! Thank you. I know we were scheduled to be sprayed that summer, just when everyone gets outside to swim and run and bike. I am eternally thankful to you and the other advocates for getting that spraying stopped especially since the scientists were all proving it was unnecessary.

I saw some of the best YouTube videos for that campaign and YouTube became a place where people in the Bay Area could meet other like-minded individuals and create community campaigns together. I was kept in the loop even though I couldn't do much but write some letters, just like I am only able to do that for CFS.

Why doesn't the CAA make some excellent YouTube videos and have a strong presence there? YouTube is free. I'm sure some of us like me would be happy to make videos for the CAA for free as well. That's one other thing I can do. I just can't show up anywhere in person.

 

[Cort]

and he

I don't feel the CAA represents the disease I have. The CAA represents people who have idiopathic fatigue and respond well to exercise and CBT.

I think I know where you're coming from - the SPARKS document. Of course you're choosing to ignore, for whatever reason, the Physician Education program on Medscape that came after that which posited a wide range of treatments for chronic fatigue syndrome. You're also ignoring the Research program, the research network etc.. none of which are devoted to CBT or GET. You're also ignoring the public documents for the CFIDS Association took the CDC to task for proposing to do cognitive behavioral studies.

You're basically saying that the endogenous retrovirus research, the research on lactic acid levels in the brain, the research on blood vessel problems constricting blood flow to the brain, etc, etc. is all focused on people who have idiopathic fatigue and respond well to exercise. That includes the repeat exercise studies that the CFIDS Association funded!

You do have a point but it's lost for me in your desire to categorize the organization in such a blunt fashion. If you said something like The Sparks document provides little help for people who do not respond well to cognitive behavioral therapy and exercise - that's something that I could probably agree with.

respond well to exercise

This, of course, suggests that all you have to do is exercise and you'll get well - which the SPARKS document does not say. It says, as I remember, that very gradual exercise can help improve health - and there's no talk of a cure. I would have put that many patients need to actually cut back their activity levels and that it doesn't work for everybody and that only a certain level of progress can be achieved. But thats very different from simply stating - patients respond well to exercise.

 

[Cort]

But I do appreciate your effort and I want to see the CAA do the same as you did. Why didn't they?

They do it several times a year. They target an issue and they have an easy (and from what I've heard very expensive) e-mail program to get the word out to our representatives. They provide talking points and encourage patients to see representatives in their own towns when the reps come home from Washington every year. They used to have a Lobby Day in which patients with actually see their representatives in Washington.

Dr. Vernon and Kim McCleary just met in Washington for three days with federal officials about CFS. I think we'll learn about that in the next CFIDSLink.

 

[jackie]

This is a bit of a rabbit trail...but addresses "the where is everybody?" issue. Just my personal experience...although I did have a desktop computer for some years - I couldn't use it. About 7/8 years ago (during one of my better periods) I "found" PH, read for a few months, suffered a severe relapse and that was the end of the Internet for me.

I asked that my computer be set up as close as possible to my bed - but was STILL unable to use it (I even tried dragging the keyboard over and resting it on my stomach to attempt to type..if you can imagine that!...of course, I finally gave up). So frustrating...the whole world waiting for me, a few feet away...and yet I could not sit up long enough to "discover" it! I had to depend on others to do bits and pieces of "research" for me...not very successfully.

It wasn't until someone bought me a lap top last summer that I found Corts forum...I jumped on the bandwagon (from my bed) and I haven't left. Thank you, Cort! You really are responsible for changing my life. Everything I learn here...I "spit" back out to everyone within earshot! (my family and friends are still recovering from the initial explosion of information...and I'm sure they wish I'd shut up!)

Interestingly, they are also confused by what, to them, is "new" information! I'm always being asked "When did you find THIS or THAT out?" or "Are you SURE this info is correct?" No matter that much of the basic "facts" are the same as those from the last 20 years!

In fact...most of the people in MY life are shocked by ANY info regarding me/cfs...that's how little access to the facts we've had - and I've been DISABLED (as in SSDI) for over 12 years.

(This could be ONE very SIMPLE explanation for the meager numbers, as I'm sure this must be the case for many others as well. The other obvious one is that many don't even have a computer OR the internet.)

I have a feeling that there are actually MORE PWC's than what has been reported. In the past several years I've been contacted by at least five "professional" people with varying degrees of disability, who have been trying to "hide" me/cfs because of the lack of support and their perceived stigma of the disease! Very sad!

jackie:Retro smile:

 

[starryeyes]

Tina and Mezombie--

I think that Sock It To Me banners are going to be a fun project for us--less stressful and crazymaking than some of the hard core politics and lobbying involving government agencies. (My hats off to all of you involved in THAT!) Who knows how far we can go with the Socks... but knowing us we will find a way to go farther than we thought we could!

I'm hoping Teej's video will be a hit on youtube. I know she's in process with that. And maybe we can make another video about the making of the Sock Banners, once we get that going.

I wrote a song a few months ago about CFS, which I am still too tired to record, but in the future I hope to get that up on youtube as well.

I think we can apply what skills and talents we have, whenever we have the energy to do so. And hopefully we can SUPPORT each other in the BIG process of bringing attention to this nasty disease.

We are all in this together. We all want to be well.

We need someone to make YouTube videos for the sock project and I'd be happy to help but I need healthy people who will take video of the socks themselves and it would be great if somebody, healthy or ill would do some video footage explaining the project.

I'm so bummed we can't use the music I love in YouTube videos anymore. We need bands that can make good music for us like Cinderbridge did.

 

[MEKoan]

Total aside: Cort, would you identify the person you are quoting please because it's so easy for me to totally lose the plot. Thanks!

 

[starryeyes]

Thank you, Tina, for your thoughtful post (#565). I think you articulated many of the issues surrounding advocacy work, and I agree that "opposing" sides are usually not very far apart.

You and others have touched on one of the big barriers we have in CFS advocacy. People are too sick to show up, and/or have such limited resources (because they are so sick) that they cannot travel to an event. I participated in marches (back in the day) and you need thousands and thousands of people to make a blip on the radar. And much of the awareness raising for other illnesses, like the breast cancer campaigns, are backed by huge corporate money. Autism Speaks grew because a tv executive had a grandson with autism, and he used his connections and resources to put a big campaign together.

The CFS community has a problem mustering big numbers, either corporate money or people-wise. So we either need a way to muster those numbers or a way around these obstacles. And what do we do in the meantime?

Jennie, I've never said the CAA is responsible for the fact that we can't make it to events where we can do advocacy for CFS. Please look at what I and others here are saying that the CAA should do right now. It's all free! It's something the CAA can and should be doing. Until they do, they don't represent me or ME/CFS.

And yes, as oerganix said, the CAA should be putting pictures of brain scans up on their Faces project and they should be explaining them in layman's language. This is a no-brainer.

 

[talkingfox]

We need someone to make YouTube videos for the sock project and I'd be happy to help but I need healthy people who will take video of the socks themselves and it would be great if somebody, healthy or ill would do some video footage explaining the project.

I'm so bummed we can't use the music I love in YouTube videos anymore. We need bands that can make good music for us like Cinderbridge did.

Yes, we DO need vids of the Sock Project. And I'm sure once it's launched we'll be able to find ppl to do just that We're still pushing for a May 12th launch. And members of the healthy community are beginning to step up to help.

As far as music goes anyone making vids is more than welcome to use any of the music that my hubby and I have produced. It is non-vocal however...

 

[starryeyes]

Jennie,

Are you going to do the traditional Lobby Day around the May 12 Awareness Day this year?

What is the CAA doing for May 12? The CAA should have some major advocacy action stated in large letters for May 12 on their front page right now! I'm very brainfogged, so tell me, did they do this and am I just missing it? Here's the front page of their website: http://www.cfids.org/

ETA: I just saw your answer Jennie, and I am not happy with it. What I said above stands. I think the CAA should be doing SOMETHING for May 12. They should at least be advertising that it's ME/CFS day on their main page on the web and encouraging letter writing. Again, this is absolutely free.

 

[starryeyes]

I have made a personal commitment to myself that any call to participate in any kind of public awareness I will participate in.

Don't we have somewhere here where e-mails were being collected for call to actions? I think I signed up for it.

Tina

Thank you for reminding us of this Tina. I signed up for it too. We need to get the Sock It To Me/CFS project on that ASAP. You can find a thread about it here in Advocacy.

And yes, Tina, Kim McCleary should be doing advocacy for us. I completely agree.

And Cort, there's nothing puzzling about why parents of kids with ME/CFS aren't advocating. Most of the kids I've heard from online say their parents don't even believe them or at least believe that ME/CFS is as debilitating as it is.

Again, I blame the CAA for their lack of knowledge and I can only hope and pray that these parents haven't read the online Sparks! program by the CAA.

 

[starryeyes]

I know that sounds like a good idea but I don't believe that that's how researchers work. Researchers do not get up in the media and blast each other like that. She would lose her credibility in the Research community if she did that. Dr. Mikovits has done some of that - she's basically questioned the integrity of some research groups - and that really isn't done much that I can tell and honestly it can't help her I don't think. Dr. Vernon is a Research Director; if she's going to be an effective one she needs to stick to the parameters of that job.

Like someone said its Kim McCleary's job to do that and she she did do that, as I've stated many times - and provided evidence for )) - over the past year and a half. You may have disagreements with the CFIDS Association stance towards the CDC before 2008 but it's really hard for me to see how you could have problems with them after that.

Dr. Vernon did her job with the CDC - she obviously provided the CFIDS Association with lots of inside material on the CDC, and they went after them very aggressively.

I hear what you're saying here but the CAA needs to continue to expose the CDC. I don't care WHO does it at the CAA. Whoever makes the bucks and is in charge should be seeing to it that it's being done.

 

[flex]

Flex quote
"Dr Vernon could have come out after the Dutch study and said "this study is of no value to advancing the understanding of the neuro immune disease ME, as it used outdated criteria which at best has never been recognised as offering value anywhere in the world". She chose not to. "

I understand that that's your opinion. She simply does not believe that that was the issue. That's her scientific opinion. Personally I think we should think about that. Is simply using the Oxford definition a reason to reject an entire study. I would say that in this context - no.


If the study had found just 10% positives or just 20% positives then I think you have a very good case saying "Aha - that's the Oxford definition at work. If they'd had more real CFS patients and fewer people who actually were depressed and didn't have CFS - then the number would have been 50%." But they didn't find any positive patients there or in the two other studies. Given that, for me I don't see the Oxford definition or any other definition playing a deciding role. For what its worth I don't think that she's right about her idea that the Science patients were very different. I think its all or mostly all methodology.

If that is her scientific opinion - well that just says it all for me!! If you really think that the Dutch study was ever going to come up with any % xmrv positives you are being over dangerously, may I say, naive. The study used a useless definition which deliberately manipulates the cohort to be 100% idiopathic fatigue patients used frozen blood samples from 1991, made no attempt at replication and was run by people from the psychiatric bias lobby.

If her scientific opinion is based on not understanding such basics then her opinion has no value in an advocacy sense. Saying she would loose credibility for deriding the Dutch study is bizarre as she had no problem questioning the WPI one. After all she works for an advocacy organisation. If she had the guts to speak out it would save the WPI people from being embroiled in the media debate and they could get on with doing valuable science.

Cort it only appears to be you who believes this:

"Is simply using the Oxford definition a reason to reject an entire study. I would say that in this context - no."

Also if she, like you - and most of us, believes there are methodology issues then why is she not pointing out these obvious bias flaws via her CAA position. She seems to have an issue with a group who can find XMRV rather than groups who are unwilling or incapable of finding it. Why is that?

 

[starryeyes]

Yes, we DO need vids of the Sock Project. And I'm sure once it's launched we'll be able to find ppl to do just that We're still pushing for a May 12th launch. And members of the healthy community are beginning to step up to help.

As far as music goes anyone making vids is more than welcome to use any of the music that my hubby and I have produced. It is non-vocal however...

TF, remind us of this again okay? I'd like to hear it but let's continue this discussion in the Sock It thread. Can you post a link to your music there?

And Jackie, I'm so glad you made it here!

 

[starryeyes]

flex wrote: Cort it only appears to be you who believes this:

"Is simply using the Oxford definition a reason to reject an entire study. I would say that in this context - no."

Yep. We have long threads here at PR to prove this is true.