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

[Otis]

Time to takeba stand, or three

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.

I haven't had a chance to keep up with all the threads but it seems we need the CAA to take a VERY strong stand on DSM-5 or we're all going to shuffled off to shrinks unless XMRV is the magic bullett and rapid treatments are available very soon. See the link below on DSM-V.

http://wwbw.forums.aboutmecfs.org/showthread.php?3062-DSM5-Ticket-back-to-Reevesville

Time to try this sleep thing.
Otis

 

[jspotila]

[The public awareness campaign] was just another excuse to waste money

The awareness campaign generated hundreds and hundreds of stories in national and local print, television, radio, online and wire stories between 2006 and 2009. The photography exhibit appeared in 36 public locations, 9 medical professional conferences, and generated coverage in the top 25 media markets in the US. The tv and radio PSAs generated over one million impressions. There are hundreds of thousands of people who heard about CFS who otherwise would have heard nothing.

Of course they don't support a name change.

Please read the Association's statement on the name change.

When will that 'at some point' be when CAA goes toe to toe with CDC and NIH?

Please read about the Association's efforts to get the CDC to spend meaningful money on the right kind of research.

it seems we need the CAA to take a VERY strong stand on DSM-5

The Association plans to submit public comment by the April 20th deadline.

 

[anne]

She vas just fvollowing der orders.

Justin, I didn't deserve this, and neither does Dr. Vernon--or really anyone else.

 

[jackie]

The statement regarding the "name change" was dated seven years ago.

As difficult as the past seven years have been for me personally - housebound, bedridden - I can't imagine what another seven (if I live that long) will be like...IF nothing changes.

The horror of that thought devastates me. I no longer remember what it feels like to be well.



I will be 66 years old.

j

 

[MEKoan]

The statement regarding the "name change" was dated seven years ago.

That's shocking.

Please Jennie, let the CAA know that it really is time to listen. It's time to listen without defending or justifying. When we defend and justify, people don't feel heard.

People don't feel heard.

Big, big problem.

 

[jspotila]

That's shocking.

Please Jennie, let the CAA know that it really is time to listen. It's time to listen without defending or justifying. When we defend and justify, people don't feel heard.

People don't feel heard.

I don't think it is shocking that the name change statement is from 2003, because the Association's position remains the same. There is still no one on the CFSAC, at DHHS, at CDC, or at NIH who has any political will to change the name of CFS as far as I can tell. The CFSAC said in 2003: "We feel that a change of this name to another name should occur only when there is a better understanding of the pathophysiology of the illness."

The Association said:

This is especially inappropriate in light of its prevalence and chronicity and the fact that the CDC has termed the illness "a major public health concern." We also note the universal agreement both within and outside the CFIDS community that the inappropriate name only adds to misconceptions about the illness. Therefore, we urge the CFSAC to expeditiously propose to the Secretary of Health a series of specific recommendations that would:

aggressively accelerate the breadth, depth and pace of CFS research;

educate the medical community about diagnosing and treating CFS;

actively seek and find ways to address the disrespect experienced by people with CFS.

To that end, we strongly suggest that the CFSAC review its position on the name change as new developments in CFS research arise.

For the past decade, The CFIDS Association of America has actively supported efforts leading to a name change. We remain convinced that a name change is necessary and we will continue to encourage and support the CFSAC's efforts toward that goal.

This is still true. We believe a name change is necessary, and we think the CFSAC should review the name change as research develops.

As far as whether the Association is listening without defending and justifying, why do you think I am here? To listen. To answer questions. Given some of the vitriol directed at the Association, sometimes it is reasonable to explain and/or defend what we are doing. We remain open to all points of view and consider all constructive criticism.

 

[MEKoan]

Jenny,

Thank you for responding to me. The CAA could update statements regarding central issues, of concern to the patients, even if there is no change in policy. This would indicate a sensitivity to the fact that this is an ongoing concern even if it is one with no immediate or easy answer.

Please forgive how plainly I will make this but I am not in shape at the moment to couch this more delicately. When we listen we do not immediately defend. We just don't. When we listen, we do a number of other things: we repeat what we heard, we comment in a way that shows understanding, we rephrase what we heard, we ask questions...

When we immediately defend a position, it just frustrates those who feel they have valid concerns which are going unaddressed.

thanks again,
k

ETA And, you know, when we do those things that demonstrate that we really are listening, we actually listen better. We get calm and people don't seem so hostile. We all get on the same page. It helps everyone.

 

[Kati]

Jenny,

Thank you for responding to me. The CAA could update statements regarding central issues, of concern to the patients, even if there is no change in policy. This would indicate a sensitivity to the fact that this is an ongoing concern even if it is one with no immediate or easy answer.

Please forgive how plainly I will make this but I am not in shape at the moment to couch this more delicately. When we listen we do not immediately defend. We just don't. When we listen, we do a number of other things: we repeat what we heard, we comment in a way that shows understanding, we rephrase what we heard, we ask questions...

When we immediately defend a position, it just frustrates those who feel they have valid concerns which are going unaddressed.

thanks again,
k

ETA And, you know, when we do those things that demonstrate that we really are listening, we actually listen better. We get calm and people don't seem so hostile. We all get on the same page. It helps everyone.

What Koan said.

 

[MEKoan]

Jenny,

I have a thought re what you quoted from CAA statement (your bold):

For the past decade, The CFIDS Association of America has actively supported efforts leading to a name change. We remain convinced that a name change is necessary and we will continue to encourage and support the CFSAC's efforts toward that goal.

Periodically amending this statement to update people as to what the CAA has been doing to "continue to encourage and support the CFSAC's efforts toward that goal" would address this particular issue beautifully.

 

[jackie]

The saddest thing to me (and for ALL the patients and for ALL the Advocates) is that we DON't have a better understanding of the Pathophysiology of our illness...........in seven years times.

Why?



j

 

[Sparklehorse]

It seems to me that there are distinct echoes with your CAA in the US and what happened over here in the UK with Action For ME (AfME). Please heed the warnings and don't let the same happen to you because AfME have been an absolute unmitigated disaster for people with ME in the UK. I see similar things going on that happened over here. The drip drip drip of pscyh propaganda will get louder and louder. You just watch. Better still, don't watch, take action, don't let it happen. Change them or destroy them before it's too late.

 

[justinreilly]

She vas just fvollowing der orders.

Justin, I didn't deserve this, and neither does Dr. Vernon--or really anyone else.

I wasn't directing this at you, Anne. Sorry you were offended.

My point is that millions are suffering. If you put your name on studies that knowingly contribute to that, there isn't really an excuse. And once she is working for CAA I feel strongly that she has a moral duty and a probably a fiduciary duty to CAA and who it represents to be out there raising awareness of what she and Reeves and everyone else at CDC did.

This is someone who was working for our government to 'help' us and now for our patient advocacy org. Her actions on behalf of CDC and now her non-actions are unacceptable. I am glad she put in a sidenote that she doesn't support Reeves def. anymore, but this is not nearly enough.

 

[anne]

Okay, but this criticism of Dr. Vernon for having her name on these studies seems unfair. We have no idea the story there. We have no idea when she realized how bad the CDC was on this. We have no idea what the consequences are of removing your name from a study. And--let's face it--whether or not her name was on that study was going to have no effect on whether or not it was going to happen. She couldn't stop it. Instead, what she did was leave the CDC and join an advocacy organization--and that action really tells us everything, doesn't it? Dr. Vernon isn't a politician. I wish she were a better politician. She's a scientist. She's getting castigated for not fulfilling our ideals of a hero, when in fact what she's done in the real world--defecting the CDC--was a stunning move.

But the more important point is-and Justin I'm just speaking in general, now, I'm not trying to pick on you. This comes up a lot-we just shouldn't compare people to Nazis. I don't care how much they haven't fulfilled our standards of behavior. Did they contribute to the death of millions and attempt complete genocide? No? Then not Nazis. It's an unfortunate kneejerk response that's become okay somehow. And it's such an offensive thing to say to someone. But it also invalidates your argument. You (one) then become someone speaking and thinking in hyperbole and then what you're saying becomes easier to discount. There've been so many good points raised in these thread--by Justin and so many others--and we risk losing. If we want to speak so people listen I think we need to keep our rhetoric from overtaking our message.

 

[MEKoan]

Okay, but this criticism of Dr. Vernon for having her name on these studies seems unfair. We have no idea the story there. We have no idea when she realized how bad the CDC was on this. We have no idea what the consequences are of removing your name from a study. And--let's face it--whether or not her name was on that study was going to have no effect on whether or not it was going to happen. She couldn't stop it. Instead, what she did was leave the CDC and join an advocacy organization--and that action really tells us everything, doesn't it? Dr. Vernon isn't a politician. I wish she were a better politician. She's a scientist. She's getting castigated for not fulfilling our ideals of a hero, when in fact what she's done in the real world--defecting the CDC--was a stunning move.

Yes, Anne, it was a stunning move! And many of us now wish to support Dr Vernon in any ongoing efforts to make good on the promise of what a move like that could mean. We wish to say we are behind her as she speaks truth to power.

We want to say forget the political niceties. We want to say let's just deal with what is, let's be in the moment and lets just speak the plain truth. We want to say, we have her back! And, of course, we want her to have ours.

That's all.

Peace out,
Koan

 

[justinreilly]

Okay, but this criticism of Dr. Vernon for having her name on these studies seems unfair. We have no idea the story there. We have no idea when she realized how bad the CDC was on this. We have no idea what the consequences are of removing your name from a study. And--let's face it--whether or not her name was on that study was going to have no effect on whether or not it was going to happen. She couldn't stop it. Instead, what she did was leave the CDC and join an advocacy organization--and that action really tells us everything, doesn't it? Dr. Vernon isn't a politician. I wish she were a better politician. She's a scientist. She's getting castigated for not fulfilling our ideals of a hero, when in fact what she's done in the real world--defecting the CDC--was a stunning move.

But the more important point is-and Justin I'm just speaking in general, now, I'm not trying to pick on you. This comes up a lot-we just shouldn't compare people to Nazis. I don't care how much they haven't fulfilled our standards of behavior. Did they contribute to the death of millions and attempt complete genocide? No? Then not Nazis. It's an unfortunate kneejerk response that's become okay somehow. And it's such an offensive thing to say to someone. But it also invalidates your argument. You (one) then become someone speaking and thinking in hyperbole and then what you're saying becomes easier to discount. There've been so many good points raised in these thread--by Justin and so many others--and we risk losing. If we want to speak so people listen I think we need to keep our rhetoric from overtaking our message.

Anne, it's true what you say that hyperbole undermines credibility.

I don't think Dr. Vernon is a bad person, much less a Nazi. The point I was trying to convey here is that she is a very intelligent person, lending her good name as an ostensibly objective scientist to these bad CDC papers. The excuse of 'I was just doing what i was told to do' only goes so far when you are a scientist supposedly working in the service of public health.

I don't think she could really say now "I'm a scientist, i don't do politics" when she, in a way, acted politically by giving cover to a nefariously politically motivated organization- CDC CFS program- with her name on papers and now her silence.

Koan said the following very nicely:

Anne posted:
Yes, Anne, it was a stunning move! And many of us now wish to support Dr Vernon in any ongoing efforts to make good on the promise of what a move like that could mean. We wish to say we are behind her as she speaks truth to power.

We want to say forget the political niceties. We want to say let's just deal with what is, let's be in the moment and lets just speak the plain truth. We want to say, we have her back! And, of course, we want her to have ours.

That's all.

Peace out,
Koan

 

[jspotila]

Jenny,

Thank you for responding to me. The CAA could update statements regarding central issues, of concern to the patients, even if there is no change in policy. This would indicate a sensitivity to the fact that this is an ongoing concern even if it is one with no immediate or easy answer.

I think this is a good point.

Please forgive how plainly I will make this but I am not in shape at the moment to couch this more delicately. When we listen we do not immediately defend. We just don't. When we listen, we do a number of other things: we repeat what we heard, we comment in a way that shows understanding, we rephrase what we heard, we ask questions...

When we immediately defend a position, it just frustrates those who feel they have valid concerns which are going unaddressed.

I agree. I would like to see this standard applied equally to all.

 

[jspotila]

The saddest thing to me (and for ALL the patients and for ALL the Advocates) is that we DON't have a better understanding of the Pathophysiology of our illness...........in seven years times.

Why?

Because the US government is not investing in CFS research in proportion to the size of the problem.

 

[MEKoan]

Jenny,

God love you, you are a fine woman! Thank you for your humanity. Let us continue a productive dialogue. We have your back!

Peace out,
Koan

 

[Angela Kennedy]

Because the US government is not investing in CFS research in proportion to the size of the problem.

Don't you mean the US government (and the UK government) are not investing in BIOMEDICAL research proportion to the size of the problem. A lot of money seems to be going on PSYCHIATRIC research, certainly far more than on biomedical research, on both sides of the pond.

And are you saying that 'lack of research funding' is the only reason?

 

[Robin]

Don't you mean the US government (and the UK government) are not investing in BIOMEDICAL research proportion to the size of the problem. A lot of money seems to be going on PSYCHIATRIC research, certainly far more than on biomedical research, on both sides of the pond.

This is a detailed list of NIH funding for CFS research.

The CDC doesn't have a nifty little table of current research projects, but, here is a summary of their research with links to recent publications.

I agree with jspot, it is unconscionably underfunded.