1/5/07 - Back in NY, back to the grind.
So the holiday trip is over and its back to NY. Back to what has been a blessing in unseasonably warm weather. For some reason, that probably isn't great for the envirnoment but is working out fine for me, this winter has resembled a lot more west coast than east coast. For someone who's lungs aren't in tip top shape this is indeed a blessing. So I felt that being somewhat more relaxed and in the warm climate would do me some good.
However, first night back - I knew I was in NY when I read an editorial piece online entitled "9/11 Illness, Manufactured Mass Hysteria". When I saw the title of this, I wasn't all that suprised, however the site where this appeared did suprise me. It was a worldwide firefighting site. This article was written in October of 2006 and posted on this site for New Year of 2007. Now while I support the right to Free Speech and Free Press to the death, I was left wondering why this site would put this article up. But that is neither here-nor-there, I read the article with a variety of emotions flowing through me. First was confusion, then anger (and we stayed here for a while), then finally determination. This article espoused that the illnesses that the first responders were experiencing from "the toxins, or alleged toxins" (I must say that the balls of this statement threw me for a moment or two, I had to re-read that line 4 or 5 times), were what they were attributing these illness to. The author then proceeds to state that there is no proof that these people got sick from here and that "some scientific papers" support the theory that the illnesses were "psychogenic" in nature.
So after that first 'emotional read', I read it again from a scientfic point of view to see what position this was taking. Primary was that these illnesses were 'psychogenic' in nature and to back this theory up (and to address the information available from sources such as the Mt. Sinai monitoring program) was that the sample used to base statistical numbers was way to small to be accurate. In reading this, and other studies I am frequently reminded of the words of Mark Twain who said, "there are lies, damned lies and statistics." But in the strict sense of the 'scientific word' the author is correct. 9,500 people studied out of the 40,000 that they admit were involved in the recovery effort is a small sample. However 2 things have escaped the authors attention - first (which at a glance would seem to bolster his theory) is that there were a lot more than 40,000 people exposed to these toxins or 'alleged' toxins. This number more than likely is closer to half-a-million, but there are no studies being done that will include these people. The Mt. Sinai program studies first responders. The students, building workers, residents and under-represented cleanup workers are not and will not be inlcuded in these studies. The reason? I've heard the director of the monitoring program speak to a group (a small group, but a group) of 'affected' persons from the WTC distaster. Her postion was that they do not have the money to treat and or follow any more than that are already monitoring. Meanwhile the room pretty much erupted with questions from the audience for the director as soon as she stopped her speach. Everyone who questioned her had a variation on the same question - "why havent I been able to get into your program? I'm ill. I was there. I've been calling for months!" Her reply went straight back to the issue of funds.
So question number one to the author would be; "how do we increase the sample size of the group that we get our data from?" The answer, of course, is; "you cant." This is a clear case of where research meets reality. If we wanted to study the effects of WTC dust on rats, we could buy more rats. Rats that were of certain spefications that would limit variables so that any differences in results would easily prove or disprove your hypothesis. However, this is real life. People were involved in this disaster. People who have all different circumstances. People who are being followed by programs that depend on funds to continue. Programs that need to set limits on whom they can study to best use those funds. So, to the author I say; "Yes Sir, I agree with you! Under 10,000 of the 500,000 possible exposures is too small of a sample size. Now lets get the funds we need to include the rest of them monitored!"
The second thing I would bring to the authors attention would be that there are more than enough studies that document the chemical composition of the smoke and dust that was in and around the WTC after the collapse. How then, can the toxins be 'alleged'? To bolster this 'psychogenic' theory, the author cites two incidents where mass illness was documented in responses to rumors of either poisoning or biological attack. They occured in Lebanon and Bosnia during times of conflict and apparently many people became ill upon hearing that either food had been poisoned or a bio agent had been released. Now, someone correct me if I'm wrong please, but did I imagine the towers collapsing? Was that plume moving real fast and all that dust I was covered in a rumor? Did I imagine the whole thing? If I did, I think I'll be needed some serious anti-psychotic medication and fast! So for my second statement to the author; "while technically speaking your point about the sample size was correct, your point of 'alleged' toxins backed up by stories of mass illnesses based on rumors seems to be absurd".
Now, I'm sure that some reading this may wonder why there was any investement on my part emotionally at all to this article. I'm quite sure that it would have been more emotionally effecient for me to give it as much thought as the headlines of the tabloids that I see in the supermarket check-out lines. However, this is representative of what we, the now ill 9/11 community, have to go through. The author of this paper was listed as a 'senior fellow, who specializes in sceince and health issues' at an institute that analyzes many areas of politics both domestic and forign. When searching this site I found that this person had authored 247 articles in 2 years, however he seems to no longer be on the staff there. (This I can hope is because of articles like this - but honestly I have no idea why). So this would seem to give more reason to ignore it. But here again we touch on reality.
And unfortunatly the reality that we face today is simple. Googling the name of this article turns up 52,300 hits (not all of course dealing with this article in particular) and many of these are reprints of this in publications across the globe. Right now, sick 9/11 responders is not a popular topic for many in the realm of politics. While the exact reasons have never been articulated to me, I can speculate as detached as possible. I think that the sheer numbers of exposures and illnesses that may result has the possibility to be staggering. What kind of health care problems this may cause one can only imagine. Who will pay for all of this? The affected are suffering financial loss now, so it won't be them. The city? I'm not sure that the city has the resources to be able to cover all that cost. The federal government? Who knows! Articles like this one, articles that are picked up and published all over the world are not going to help this problem out. For those who are tasked with finding a way to 'minimize the damage' of this whole event - an article written from a supposed scientific basis is a Godsend. Just the ability to cast scientific doubt on these people's claims may be the basis for turning them away from the benefits that they not only deserve, but desperatly need.
From a personal point I can tell you and the author this, during the time I have spent reading the article, looking up some research of my own and writing this post, (which has not been time 'in-a-row'), I have had to nebulize 4 times. For those of us who are reduced to this kind of life now, we don't need anyone telling us that we can't do what we used to be able to because the 'alleged toxins' are producing 'psychogenic' reactions. What we need is help, both political and medical. But more importantly, to get that kind of help - we need the knowledge, support and demands of the public that the right thing be done.
However, first night back - I knew I was in NY when I read an editorial piece online entitled "9/11 Illness, Manufactured Mass Hysteria". When I saw the title of this, I wasn't all that suprised, however the site where this appeared did suprise me. It was a worldwide firefighting site. This article was written in October of 2006 and posted on this site for New Year of 2007. Now while I support the right to Free Speech and Free Press to the death, I was left wondering why this site would put this article up. But that is neither here-nor-there, I read the article with a variety of emotions flowing through me. First was confusion, then anger (and we stayed here for a while), then finally determination. This article espoused that the illnesses that the first responders were experiencing from "the toxins, or alleged toxins" (I must say that the balls of this statement threw me for a moment or two, I had to re-read that line 4 or 5 times), were what they were attributing these illness to. The author then proceeds to state that there is no proof that these people got sick from here and that "some scientific papers" support the theory that the illnesses were "psychogenic" in nature.
So after that first 'emotional read', I read it again from a scientfic point of view to see what position this was taking. Primary was that these illnesses were 'psychogenic' in nature and to back this theory up (and to address the information available from sources such as the Mt. Sinai monitoring program) was that the sample used to base statistical numbers was way to small to be accurate. In reading this, and other studies I am frequently reminded of the words of Mark Twain who said, "there are lies, damned lies and statistics." But in the strict sense of the 'scientific word' the author is correct. 9,500 people studied out of the 40,000 that they admit were involved in the recovery effort is a small sample. However 2 things have escaped the authors attention - first (which at a glance would seem to bolster his theory) is that there were a lot more than 40,000 people exposed to these toxins or 'alleged' toxins. This number more than likely is closer to half-a-million, but there are no studies being done that will include these people. The Mt. Sinai program studies first responders. The students, building workers, residents and under-represented cleanup workers are not and will not be inlcuded in these studies. The reason? I've heard the director of the monitoring program speak to a group (a small group, but a group) of 'affected' persons from the WTC distaster. Her postion was that they do not have the money to treat and or follow any more than that are already monitoring. Meanwhile the room pretty much erupted with questions from the audience for the director as soon as she stopped her speach. Everyone who questioned her had a variation on the same question - "why havent I been able to get into your program? I'm ill. I was there. I've been calling for months!" Her reply went straight back to the issue of funds.
So question number one to the author would be; "how do we increase the sample size of the group that we get our data from?" The answer, of course, is; "you cant." This is a clear case of where research meets reality. If we wanted to study the effects of WTC dust on rats, we could buy more rats. Rats that were of certain spefications that would limit variables so that any differences in results would easily prove or disprove your hypothesis. However, this is real life. People were involved in this disaster. People who have all different circumstances. People who are being followed by programs that depend on funds to continue. Programs that need to set limits on whom they can study to best use those funds. So, to the author I say; "Yes Sir, I agree with you! Under 10,000 of the 500,000 possible exposures is too small of a sample size. Now lets get the funds we need to include the rest of them monitored!"
The second thing I would bring to the authors attention would be that there are more than enough studies that document the chemical composition of the smoke and dust that was in and around the WTC after the collapse. How then, can the toxins be 'alleged'? To bolster this 'psychogenic' theory, the author cites two incidents where mass illness was documented in responses to rumors of either poisoning or biological attack. They occured in Lebanon and Bosnia during times of conflict and apparently many people became ill upon hearing that either food had been poisoned or a bio agent had been released. Now, someone correct me if I'm wrong please, but did I imagine the towers collapsing? Was that plume moving real fast and all that dust I was covered in a rumor? Did I imagine the whole thing? If I did, I think I'll be needed some serious anti-psychotic medication and fast! So for my second statement to the author; "while technically speaking your point about the sample size was correct, your point of 'alleged' toxins backed up by stories of mass illnesses based on rumors seems to be absurd".
Now, I'm sure that some reading this may wonder why there was any investement on my part emotionally at all to this article. I'm quite sure that it would have been more emotionally effecient for me to give it as much thought as the headlines of the tabloids that I see in the supermarket check-out lines. However, this is representative of what we, the now ill 9/11 community, have to go through. The author of this paper was listed as a 'senior fellow, who specializes in sceince and health issues' at an institute that analyzes many areas of politics both domestic and forign. When searching this site I found that this person had authored 247 articles in 2 years, however he seems to no longer be on the staff there. (This I can hope is because of articles like this - but honestly I have no idea why). So this would seem to give more reason to ignore it. But here again we touch on reality.
And unfortunatly the reality that we face today is simple. Googling the name of this article turns up 52,300 hits (not all of course dealing with this article in particular) and many of these are reprints of this in publications across the globe. Right now, sick 9/11 responders is not a popular topic for many in the realm of politics. While the exact reasons have never been articulated to me, I can speculate as detached as possible. I think that the sheer numbers of exposures and illnesses that may result has the possibility to be staggering. What kind of health care problems this may cause one can only imagine. Who will pay for all of this? The affected are suffering financial loss now, so it won't be them. The city? I'm not sure that the city has the resources to be able to cover all that cost. The federal government? Who knows! Articles like this one, articles that are picked up and published all over the world are not going to help this problem out. For those who are tasked with finding a way to 'minimize the damage' of this whole event - an article written from a supposed scientific basis is a Godsend. Just the ability to cast scientific doubt on these people's claims may be the basis for turning them away from the benefits that they not only deserve, but desperatly need.
From a personal point I can tell you and the author this, during the time I have spent reading the article, looking up some research of my own and writing this post, (which has not been time 'in-a-row'), I have had to nebulize 4 times. For those of us who are reduced to this kind of life now, we don't need anyone telling us that we can't do what we used to be able to because the 'alleged toxins' are producing 'psychogenic' reactions. What we need is help, both political and medical. But more importantly, to get that kind of help - we need the knowledge, support and demands of the public that the right thing be done.
posted by Iloveny_marf @ 9:18 AM
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