Well
Well, I was so thankful to CAA when I first got sick. The first Chronicle I got had an article about tips of how to pace and try to lessen symptoms / crashes if you are working. And follow up issues provided information on studies. I guess this was before I found the other message board and long before I found this one. That was so helpful at that time. Just what I needed and more. Not to mention, the layout and the articles were very professionally done.
Yet, as I learned more about these organizations, CAA included, the CDC, the UK mess, and more, I saw patients not happy with CAA. Given that many are in desperation and the offenses of the local doctor and government, naturally patients will want CAA to speak and push more aggressively.
At first, CAA found that trying to cooperate with government agencies and convincing Congressmen who hold taxpayer purse strings would be the best way. In general, I would agree that often that is the best approach.
As a news reporter, I have often seen that groups on opposing sides of an issue are closer to agreement than they realize, but they become so polarized by the extreme but small and more outspoken portion of their side, and they vilify the opposition to the point they aren't talking. And no talking means these two groups, the majority of which are inches from each other in what they believe, end up struggling instead of finding compromise, or even realizing they actually 90% agree. To make progress, most often, it is compromise from those in the middle, instead of one side barreling over the other by shear numbers and force. So I absolutely understand why there was talking instead of attacking with CDC for a while.
I think CAA was under the misconception that biological evidence would change the view. They underestimated the bigger role that ego, bias and sexism would play in the decisions of CDC.
I have also not seen any effort to reveal to Congress the true public health issue this is. Sorry, figures don't mean anything. A picture of one person sick on the bed doesn't mean anything (sad, but that is one person). I think in the case of Congressmen, they would respond more to public demonstrations that get media coverage. Even figures of cost to economy doesn't mean anything, every illness costs the economy.
And that brings me back to another point. Sometimes aggressive public demands are the only way, despite what I said above. While talking and cooperating is the way of progress most of the time, it does have its limitations when other motivations are stronger. Case in point are the demonstrations that ended the US involvement in the Vietnam War. It was public outcry, thanks in part to media coverage of demonstrations, that put the pressure on politicians that changed their actions. People expressing their opinions or talking privately would not have worked in that case.
So, CAA is now aware. Instead of rallying a public awareness campaign (type of demonstration) or news generating campaign, they are putting their limited funds into research and lobbying still, as they have abandoned the effort to massage CDC into seeing the light. I can't disagree with that, although I think we now have multiple organizations doing research or funding research, can we make that more efficient? But this was another case of figuring out CDC was not going to do it so patients had to fund the right type of research themselves.
But that leaves a void of educating doctors (not passively, a brochure, but actively), and public awareness. (Is CAA working to get knowledgeable CFS doctors to speak at conferences of regular doctors?)
I appreciate CAA's work in the SPARK campaign. And, I also appreciate CDC giving money for that. That was some admission of neglect on their (CDC) part, although no admission of error. Still I don't know if it was executed well. I think the point was to show that it is anyone who can get this and that they may look healthy. If that was the point, the faces were effective. But it didn't show the severity of the illness (in some cases) and did not show numbers of affected (just saying the number isn't enough, a chart, something visual would have been better), and it didn't change minds as to the biological nature of it.
Of course, maybe some of that was included. I wouldn't know, it did not come into my state. My state was missed completely. The Birmingham / Hoover (AL) metropolitan area is ranked 48 in population and we have lots of hospitals and doctors here. I know they couldn't get to everyone, funds being what they are, but I am afraid the SPARK campaign did nothing to help me or the public awareness in my area, and as far as I know, did nothing to educate doctors in my area.
And, I have sent messages to Dr. Donnica asking her if she will take a proactive approach to public awareness in her new responsibilities at WPI. I asked through this board, which she used to post on and through her Facebook account. Weeks now, and I have not gotten an answer. While I believe it would be nice if she did, I now question whether it is appropriate for a research lab to campaign for public awareness of an illness or to spend money on trying to convince public or doctors of what they believe about an illness. It may be seen as conflict of interest since they are supposed to be unbiased researchers. Hard to be advocate and be objective, credible scientists also. So trying to do advertising campaigns might not be appropriate. It would be for CAA, which was set up first as advocacy. But, the problem is, they have very little funds now.
I was talking to someone else in the chat room. This other person has experience in garnering media attention to health issues (not CFS). I have experience on the other side, of what reporters look for to decide what to cover. We were bouncing around some ideas. I would hate to start another organization to do CFS advocacy, there are already so many. But no one is now working to get public awareness, as far as can be seen.
If I was to advise CAA, I would say.... get the public, media and patients on your side first, then the politicians will follow. So maybe lobbying is not the best use of resources right now. When media runs stories of people laying down on the sidewalk to show how sick they are, and it happens across the nation at once, the politicians will take notice. If not that, there are other ways to get it into the public consciousness.
I watch a lot of T.V. So I sit and see "Relay for Life" with everyone wearing pink ribbons. I see commercials for the "Go Red" campaign, sponsored by Campbell's. And all we do is send letters to Congress, every spring, every fall, every spring, every fall. Nothing changes. Just more and more money mostly going to research that hasn't changed CDC, Congress or public. We are not doing anything to bring the illness out of the bedrooms and into the public's eye, right now.
Secondly, I would advise to get information to doctors in way they consider credible. I know CDC was hoped to become that source, but it didn't happen. Move on. Find another credible source.
And, I have an issue with CAA that I have spoken to Jennifer about privately. I will be checking back in a few months to see if it changes. But until that time, I think that when CAA puts the call out for us to participate in any kind of effort, even if it is not to the public or doctors but to politicians, we should support it. In time, surely the void will make someone realize that we have got to do something more public before things will change.
Thirdly, I advise CAA to possibly decide whether funding research is the best use of money, in the absence of public awareness. While research is surely needed, given the lack of it from the government, there are others that are doing that, WPI and more. Is it efficient? Maybe it is. I don't know. But that needs to be looked at. If CAA determines research is priority for them in their mission above public awareness campaign, then maybe we do need another organization to be formed for that purpose. Sad, we are already split into fragments already. And I would hate to draw funding away from the work the others are doing. Maybe if CAA would form a campaign plan, then maybe they would get more funding for it and no new organization is needed. Plus, a lot of it can be done without funding. I have been bouncing around an idea for using the Internet to get the news to people of the nature of the illness.
Another issue, of course, is that we are a cantankerous group, inner fights and no one can agree. Anyone that sticks their head out to do something gets lots of complaints against them (see current thread and the other complaining of the NJ thing.) Because of the past ill treatment, we are very sensitive and frustrated and angry. I often say, "We are a tough crowd."
Anyone who wants to do this, please, come up with something attention-getting that has not been done before. Let's be creative, news people love something different.
Tina
