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

[oerganix]

I realize that and I appreciate that you tried and had such negative aftereffects. We have the most difficult time of probably any disease advocating. Certainly it's frustrating on many levels - its frustrating to you, I'm sure is frustrating to the CFIDS Association, and its frustrating to me. It's a difficult situation.

I even wonder if maybe there aren't so many CFS patients as we think. The statistics suggest about 200,000 people have been diagnosed with CFS in the US. But here with are - I believe in the biggest CFS Forum on the internet - with about 1,500 people. I have wondered for years where is everybody? It could be that the size of the community is really much smaller than we think.

I was at one Lobby Day in Wash DC - an hour and a half away from the Big Apple - and I think there was ONE person from New York. How could only one person show up for the biggest city in the country which is right next door? I was just bowled over by that; that really stuck with me.

I've heard several leaders in the community also state that CFS has never really gotten the support from the parents. One guy was in the non-profit field before he came down with CFS and he stated that the parents of other people with diseases played a huge and vital role in advocating for them. They were healthy, they had resources and of course they had their perspective talents that they brought to support organizations. While, of course, some parents have contributed mightily in general that has not happened with CFS. Its a puzzle.

Re numbers of CFS sufferers: I think it may be that many of them are doing what I was doing; that is basically hibernating and surviving all the "benign neglect" that was sucking our energy without giving anything to hope for. I got to the point I just had to accept my life as it IS right now and not "waste" anymore money or energy on supplements that didn't work, treatments that didn't work, support groups that brought me down. Other forums were basically a place to bemoan our symptoms and commiserate and I'd had enough of that. I had to stop reading about and yearning for treatments that work for some, because they are all still EXPERIMENTAL, after all this time, (something I curse the CDC for causing or at least not preventing), and therefore not being available to the impoverished CFS sufferer.

So, I don't think there are fewer of us at all. I just think there are fewer of us willing or able to join forums and do something. I know I have greatly curtailed my activities just because I am so tired of being undependable...not knowing whether I'll be able to follow through...and feeling so bad when I can't. I can think of several reasons why people not be joining online forums....or at least I did think of them a few seconds ago...duh...

Re: parents. Yeah, that's big part of the puzzle. The psychologizing of the illness has encouraged many parents and siblings to reject, judge or just be puzzled by their CFS-suffering offspring. Mine still don't get it. It, then, tends to alienate sufferers from their families, either willingly or by default. It's one of my biggest regrets, that family and friends and spouses/lovers who SHOULD have known better, it seems to me, succumbed to the psych lobby and decided my illness was all in my head. With my history, they should have known better, but the CDC did their hoodoo and their voodoo and people I thought I could count on were won over. So, yeah, I'm really over sensitized to any promotion of 'it's all in your head' ideas. I believe it has deprived me of support I might have had if the CDC had done its job back in the 1980s and got to work on the problem, like they did with AIDS. So when I read, as I did this morning, of a conference in 2007 or 8? on the possible viral component in CFS, and there is a bio of Dr Vernon, stating that she "led the CDC research effort" on CFS for 17 years, I can only think: yah, so what?

And the parents of children with CFS have a whole extra load of worries in addition to the illness itself. Like being accused of child neglect or abuse, having the kids taken away, etc. etc.

Having said all that, coming back to the NOW, I agree that CAA has some good research going on, and I DO appreciate it. I'm just not going to take a poke in the eye, like the GET/CBT stuff or the doctor education materials, or the weird response to the failed European studies, without hitting back. Feels like self defense to me.

 

[oerganix]

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:

Yes, that's how I see it, too.

It costs me around $60/month to have internet at home. That is something I reconsider every month when I have to pay it. I think of dropping out entirely from using the internet for anything...back to basics, blah, blah, blah. Then I pay up...one more month. I could get 4 massages or 4 acupuncture treatments a month for that money....

My other alternative is to go to an internet cafe in a noisy public place, sometimes with smokers and jokers nearby, or kids being 'babysat' by their parents leaving them to play noisy computer games online while they slip off to....whatever it is they slip off to do. If I were healthier, I could stand this, but I'm not, so I can't.

I've been through times when I didn't have a working computer and couldn't do anything about it. I now have a laptop, bought on a credit card. I will probably still be paying for it (at 18% interest since the credit card companies just raised interest rates for no other reason than they could. grrr!) when the laptop dies. Once again, I may have to decide that being connected is just too costly.

 

[Lily]

Re numbers of CFS sufferers: I think it may be that many of them are doing what I was doing; that is basically hibernating and surviving all the "benign neglect" that was sucking our energy without giving anything to hope for. I got to the point I just had to accept my life as it IS right now and not "waste" anymore money or energy on supplements that didn't work, treatments that didn't work, support groups that brought me down. Other forums were basically a place to bemoan our symptoms and commiserate and I'd had enough of that. I had to stop reading about and yearning for treatments that work for some, because they are all still EXPERIMENTAL, after all this time, (something I curse the CDC for causing or at least not preventing), and therefore not being available to the impoverished CFS sufferer.

So, I don't think there are fewer of us at all. I just think there are fewer of us willing or able to join forums and do something. I know I have greatly curtailed my activities just because I am so tired of being undependable...not knowing whether I'll be able to follow through...and feeling so bad when I can't. I can think of several reasons why people not be joining online forums....or at least I did think of them a few seconds ago...duh...

Re: parents. Yeah, that's big part of the puzzle. The psychologizing of the illness has encouraged many parents and siblings to reject, judge or just be puzzled by their CFS-suffering offspring. Mine still don't get it. It, then, tends to alienate sufferers from their families, either willingly or by default. It's one of my biggest regrets, that family and friends and spouses/lovers who SHOULD have known better, it seems to me, succumbed to the psych lobby and decided my illness was all in my head. With my history, they should have known better, but the CDC did their hoodoo and their voodoo and people I thought I could count on were won over. So, yeah, I'm really over sensitized to any promotion of 'it's all in your head' ideas. I believe it has deprived me of support I might have had if the CDC had done its job back in the 1980s and got to work on the problem, like they did with AIDS. So when I read, as I did this morning, of a conference in 2007 or 8? on the possible viral component in CFS, and there is a bio of Dr Vernon, stating that she "led the CDC research effort" on CFS for 17 years, I can only think: yah, so what?

And the parents of children with CFS have a whole extra load of worries in addition to the illness itself. Like being accused of child neglect or abuse, having the kids taken away, etc. etc.

Having said all that, coming back to the NOW, I agree that CAA has some good research going on, and I DO appreciate it. I'm just not going to take a poke in the eye, like the GET/CBT stuff or the doctor education materials, or the weird response to the failed European studies, without hitting back. Feels like self defense to me.

Well said, Oerganix and I have to agree. I think there are far more PWCs that are so physically, emotionally and financially impoverished they don't have the energy to care or hope anymore, and don't even have computer access. There are many, I imagine that don't even know of XMRV.

It's my belief that many are misdiagnosed and have actually succumbed to the idea that they are mentally ill and are going along with the diagnosis of major depression. Probably some have even been convinced to try ECT, and as a last ditch hope went along with it. This would not be surprising at all. I imagine some have tried the newer treatments such as vagal stimulators and magnetic whatevers.....(can't remember)

I also believe in many aspects that the stigma attached to this disease is worse than even what HIV or mental illness use to be. It's actually more acceptable these days to admit to disabling depression that CFS. It's not surprising to me that parents or others are not out there advocating because of the stigma. Even though a lot has changed in medicine and doctors aren't seen so much as Gods anymore, there is still the idea held by most people who haven't actually experienced this disease that if numerous physicians and highly specialized practitioners cannot find anything wrong, then there really can't be anything wrong.

The CAA has some good stuff going with research and the bio bank and Dr. Vernon needs to get that credit. But something else is still wrong at the CAA - just doesn't feel right. I really think the leadership just isn't strong or savvy enough. Time for some new blood with new strategies, ingenuity, great passion and belief that something more can be done. It's going to be difficult to overcome the damage the CAA has done in order to win back the support of former contributors. Not sure it can be done and it might be better if they stick to research. I know they've done some good things, and we don't have many advocates, but at this point I'm still not convinced they haven't done more harm than good. Yes, I know I'm beating a dead horse......

 

[mezombie]

Well, that is frustrating. I Googled "Sock it to me banners CFs" and could not find any information of what you are referring to. I don't know anything about it.

Tina

"Sock it to ME" is a project being discussed on this forum. Sorry I wasn't more specific. I've added the URL to the thread on my original post and will add it here again for you and others:

http://www.forums.aboutmecfs.org/sh...blic-art-project-to-raise-awareness-and-funds.

 

[mezombie]

Re: Number of people on forums

Just wanted to add that Orthostatic Intolerance isn't the only reason people with ME/CFS aren't on the internet.

There are many whose cognitive problems and/or light sensitivity prevent them from participating. If one can't read, forget forums. If one can't figure out what one is reading, forget forums. If one look here creates a crash (as merely searching for a the post I quoted from above and then posting this is), forget forums.

And then there are those who are able to work (just barely) and come home to collapse. The last thing they want to do is go back on a computer (and that's assuming they are able to).

The stigma of "CFS" and its impact on attitudes of healthy family and friends definitely has left us with even less people power.

Ironically, I found advocacy easier to lead and engage in prior to the internet. And I was involved in advocacy for other causes before coming down with this disease.

 

[Roy S]

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!

I've already asked him to do that and I'm not the only one. He does it on the other groups too.

 

[usedtobeperkytina]

That's the understatement of the year:

"...getting somebody to go the a rally in Washington is a much bigger commitment than joining an internet forum."

 

[justinreilly]

We and the Public Need to Hear it Straight from Dr. Vernon; There is No Substitute

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.

Drastic situations call for drastic measures- such as telling the truth.

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 bet when Kim McCleary went to meet with CDC with info from Dr. Vernon to get Reeves out, the CDC director didn't just say 'ok, thanks for letting us know, Ms. McCleary; we'll get rid of Reeves.' It's likely they said 'well we'd like to hear it straight from Dr. Vernon before we decide anything.'

When making big decisions like in the above situation or in a court of law or in the court of public opinion people need to hear the story live straight from the horses' mouth. This is why CAA can not delegate this 'information dissemination' to someone else like Kim McCLeary. (And noone at CAA is putting this story out to us and the public anyway)

 

[Otis]

Some follow-on thoughts to Lity's

Well said, Oerganix and I have to agree. I think there are far more PWCs that are so physically, emotionally and financially impoverished they don't have the energy to care or hope anymore, and don't even have computer access. There are many, I imagine that don't even know of XMRV.

For me my energy and passion waxes and wanes - as does everything else. Finding this group has reenergized me right now. But if this old laptop dies I can't afford to replace it. Then my access will be limited to the times I can sit at a keyboard, which isn't often at the moment.

I also believe in many aspects that the stigma attached to this disease is worse than even what HIV or mental illness use to be. It's actually more acceptable these days to admit to disabling depression that CFS. It's not surprising to me that parents or others are not out there advocating because of the stigma. Even though a lot has changed in medicine and doctors aren't seen so much as Gods anymore, there is still the idea held by most people who haven't actually experienced this disease that if numerous physicians and highly specialized practitioners cannot find anything wrong, then there really can't be anything wrong.

I have developed enough severe pain to be 'borderline' Fibro and that's usually how I describe myself to people I meet due to the stigma and general lack of awareness associated with CFS. As I get to know people I roll out the CFS details. Most people, especially women know someone with Fibro and 'get it' much more easily. I probably need to work harder in my little tiny circle of influence to talk more about CFS.

I think there's also the fact that there are Fibro 'treatments' with a major drug company buying TV time and magazine ads that brings awareness and acceptance. It's sad that it takes a marginal treatment with the big $ behind it to get better awareness.

The CAA has some good stuff going with research and the bio bank and Dr. Vernon needs to get that credit. But something else is still wrong at the CAA - just doesn't feel right. I really think the leadership just isn't strong or savvy enough. Time for some new blood with new strategies, ingenuity, great passion and belief that something more can be done. It's going to be difficult to overcome the damage the CAA has done in order to win back the support of former contributors. Not sure it can be done and it might be better if they stick to research. I know they've done some good things, and we don't have many advocates, but at this point I'm still not convinced they haven't done more harm than good. Yes, I know I'm beating a dead horse......

I agree that something doesn't feed right and I think if there's serious passion within the walls of the CAA it doesn't seem to leave them. If you read Kim McCleary's words from the statement to the CFSAC last year, the message is pretty good but in watching the video she just doesn't demand attention. She pretty much reads her notes in a monotone. I'm a crappy public speaker but I'm an engineer :Retro smile: not a CEO of an advocacy organization.

Give me the choice between "We're mad as hell and we're not going to take it" that might put off some people but that might light a fire in some vs. "We're still pretty upset and we're still taking it" I'll take the former every time.

I think we need to find a way to spin up Wanda Jones - I would not want to get in her way if she were on a mission.

Otis

 

[usedtobeperkytina]

This is 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."

That being the case, hard to get people to do anything beyond what they have to to survive.

Also, hard to rally patients except us on these sites. If CAA wanted to get the word out of a campaign, there is no doctor and no support group in my city for CFS. How would they get the word to CFS patients in Birmingham, AL, a city of over 1 million.

As we all know, there is no one specialist that treats CFS.

Tina

 

[Lily]

If you read Kim McCleary's words from the statement to the CFSAC last year, the message is pretty good but in watching the video she just doesn't demand attention. She pretty much reads her notes in a monotone. I'm a crappy public speaker but I'm an engineer :Retro smile: not a CEO of an advocacy organization.

Give me the choice between "We're mad as hell and we're not going to take it" that might put off some people but that might light a fire in some vs. "We're still pretty upset and we're still taking it" I'll take the former every time.

I think we need to find a way to spin up Wanda Jones - I would not want to get in her way if she were on a mission.

Otis

Otis, I thought Ms. McCleary's statement to CFSAC was very revealing. The message was there, but the written and oral delivery was far from compelling.

 

[usedtobeperkytina]

Well, I am thinking of this idea. It will be the simplest thing we can do.

I say we all flood other message boards on May 11 telling about CFS and the May 12 effort. We can even preface it with our own limitations and difficulty in getting news coverage. We spend so much time on this and the other CFS message board, we could be posting on other message boards and getting the word out. I am talking about any message boards, sports, community events, politics, any of them. It doesn't cost anything.

It will take some energy, but much less than traveling or even writing a letter. And on message boards, we can answer questions.

We can explain doctor problems, government problems, etc.

It is a thought. I may do it on my own even if no one joins me. (Although, I still disagree with the May 12 date.)

If anyone is interested, let me know. I might start accumulating some facts.

Tina

 

[Hope123]

RE: participation. When the methods takes into account how sick people are, they do show up. The two broadcasted CFSAC meetings last year had 800+ viewers live per DHHS (I don't know how many more looked at the archives), all the speaker spots were filled when phoned-in testimony was accepted, and the online talk by Dr. Mikovits had 800+ live viewers also before it shorted out and we had to watch the rest later on.

Jspotila, if you are still looking at this thread and if you missed my past post, please ask the CAA to consider MERGING your registry/ biobank with that of the WPI. Makes it easier for patients and researchers. This is no time to fight over turf.

 

[_Kim_]

I've already asked him to do that and I'm not the only one. He does it on the other groups too.

I have asked Cort to use the quote function as well. More than once. It's impossible to engage in dialogue if you don't know the source of the original message that is being referenced.

Is this a matter of not knowing how to use the quote function? I can explain it, if that is the case.

 

[MEKoan]

Me too! It's impossible to follow if people don't identify who they are quoting!!! I asked for the same thing recently!

PS See how great the Quote function is? I can click on that little arrow thing next to Roy's name - which I just did - and discover that he was talking to...

me!

 

[Stuart]

Wait? What!

Since when is commentary on research, research?

When are statements questioning an extensive study research?

When is effectively saying 'oh this creates some doubt' to a series of rapid, poorly executed 'studies' that didn't go through what the initial study did, and used a PCR technique that has been shown to have limitations under the best conditions, (which by the way a for profit company providing the first testing for XMRV found Zero positives with), be somehow research and not advocacy?

When is deciding what research to fund, in fact not a sort of advocacy as well.

Vernon is not doing research, she is advocating, administrating, and doing PR.

It is exactly the Advocacy she Has done in the Press Releases that have many giving up that the CAA has changed behavior.

Really Suzanne, who is playing the weak hand?

 

[Lisette]

I used to have a subscription to the CAA-- then I let it lapse because I didn't feel they were talking about anything as relevant as what was being discussed on PH and now here. It was the advocates like MEZombie and others that opened my eyes to what goes on behind the scenes-- not the CAA. In other words, people were informing me for free, and the information was backed up with links to documents and so forth.

Things that I would read on the CAA just kept sounding like repeats of "we are committed to continuing to encourage..." I don't know what that means in terms of any aspect of advocacy or research. I don't feel their commitment, or their encouragement, regardless of how hard they perceive themselves to be offering these very things. They seem committed to maintaining a foothold in the D.C. public forms, and I can appreciate what a monster of a job that must have been in the beginning to establish.

But now the statements feel as hollow as "Go, be warm, be fed..." and the sorts of meaningless blessings that were bestowed by religious leaders, without finding out why the people were not fed nor warm.

The things that disappoint me the most are the "damn with faint praise" sorts of reactions to the WPI study. I was especially disappointed with Dr. Vernon's headline for an article called "Playing a Weak Hand Well". I read it twice trying to figure out if she meant that the WPI had a weak hand, or if the PLosOne journal had a weak hand, but were playing it really well. Either way, it felt like the opposite of advocacy.

It felt like a researcher wanting to be part of the main action, but rather was forced to make commentary from the sidelines in a detached manner of, "we'll just have to see what happens in the last quarter".

So, now I am confused as to what the priorities are-- research which remains neutral, or advocacy that keeps people focused on the incredible urgent crises that patients are in. If I can't tell, after several years as to what the primary mission of the CAA is-- and it can only have so many if it is truly that small and underfunded, then my guess is that they themselves don't know and are sort of trying to "hit the high spots" on everything which is going to make no one happy.

As the old saying goes, "if you trim yourself to please everyone, soon you will have whittled yourself away to nothing." I would hate to see this happen.

I'm not usually this outspoken but this is how someone who is not a political activist by nature is feeling, and I probably represent a lot more people like me.
Lisette

 

[alice1]

I really like your honesty Lisette.
To the point and simply said

 

[Dolphin]

Well, I am thinking of this idea. It will be the simplest thing we can do.

I say we all flood other message boards on May 11 telling about CFS and the May 12 effort. We can even preface it with our own limitations and difficulty in getting news coverage. We spend so much time on this and the other CFS message board, we could be posting on other message boards and getting the word out. I am talking about any message boards, sports, community events, politics, any of them. It doesn't cost anything.

It will take some energy, but much less than traveling or even writing a letter. And on message boards, we can answer questions.

We can explain doctor problems, government problems, etc.

It is a thought. I may do it on my own even if no one joins me. (Although, I still disagree with the May 12 date.)

If anyone is interested, let me know. I might start accumulating some facts.

Tina

Might work (I haven't put much thought into it).

I've seen a few bloggers talk about ME/CFS specifically on that day (or around that) which can also be good.

Could probably done with other social media e.g. Facebook, Twitter (might need to link to something interesting - maybe a YouTube video, etc), etc.

 

[Dolphin]

RE: participation. When the methods takes into account how sick people are, they do show up. The two broadcasted CFSAC meetings last year had 800+ viewers live per DHHS (I don't know how many more looked at the archives), all the speaker spots were filled when phoned-in testimony was accepted, and the online talk by Dr. Mikovits had 800+ live viewers also before it shorted out and we had to watch the rest later on.

Jspotila, if you are still looking at this thread and if you missed my past post, please ask the CAA to consider MERGING your registry/ biobank with that of the WPI. Makes it easier for patients and researchers. This is no time to fight over turf.

Although technically, listening is a bit more passive than actually doing something (in terms of the 800s) (also the first CFSAC meeting had a much lower viewership than the second, I thought?).

I know there are plenty of people everywhere interested in treatments for themselves. But that doesn't always convert to them being willing to do something for the cause/doing something for the cause.
If one looks in financial terms, quite a lot of people will have spent over $1000 on treatments, many over $10,000 over the course of their illness but haven't given anything to research which could lead to new treatments, knowledge of current treatments (which might work/won't work, etc). Same applies in other areas - often very few people will reply to bad media coverage e.g. send a letter to the editor. Basically, we need to keep encouraging people to support the cause/get involved (which can help them in the long run) - otherwise they'll leave it to one of the other million with the illness (but often in reality, it's left to quite a small group in relative terms).