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Written Comments submitted by Lisa Nagy M. D.
To NTP/NIEHS
I would like to as brief as possible to be as effective as I can. I will
summarize my personal experience as a physician (trained at Cornell Medical
College) with Emergency Medicine and Surgical background who became deathly ill
in California from a mold exposure. I am now relatively well and have been
traveling the country over the past year speaking to my experience, and how
environmental medicine practice alone is able to treat and diagnose these patients.
My hope is that through your research the obvious symptoms that millions of us
develop can be substantiated. From there diagnoses and treatment can be
facilitated once the veil of secrecy and denial has been lifted about whether these
patients are in fact ill from mold in the first place.
When I speak to the public, the most important concept that I explain is
that I became very ill from Environmental Illness induced by mold (other chemicals
can cause it but mold is probably the biggest offender now) and it gives me a new
understanding of the ubiquity of these conditions in their mild forms in a large
proportion of society. We are all on a 1 to 10 continuum of being environmentally
affected. I may have been a 10. But no one is a zero. We are all exposed to car
exhaust on the way to work, the dog and cat at home, pollen in the air and chemicals
in stores. It is how we react with headache, fatigue, irritability, dysautonomia,
asthma, itching, flushing, anaphalaxis that labels us as more or less reactive or
sensitive. Many people have symptoms that are covered up or masked and they do
not realize they are sensitive while in a toxic environment until they get away for
about a week then they blossom and become sensitivie to mold, their home, and
chemicals. This is one of the discoveries made over 60 years ago by Rinkle in his
study of his own allergy to eggs. He was raised on eggs every day. When he finally
stopped eating them for 5 days as an adult he developed intolerable responses
(syncope) to them when reintroduced. Thus was born the field of environmental
medicine I suppose.
Now, I would like to say that your panel of experts should include at a
minimum 5 members of AAEM (The American Academy of Environmental
Medicine) many of whose members are versed in this clinical field. I would suggest
off hand: Bill Rea M.D (Environmental Health Center of Dallas), Jean Monroe M.
D. (Hertfordshire, England), Kalpana Patel (Buffalo New York). In addition
Michael Gray M.D. has studied many patients as have Kaye Kilburn Phd. and
Aristo Vojdani. They are not practicing environmental medicine and should
utilized for Biomarker assessment and Neurologic testing guidance be the subjects
rats or human. My feeling is that there is no point in avoiding the people that admit
the neurotoxicity and development of chemical sensitivity and immune and
autonomic dysregulation in your quest for truth. Rather you should employ them
and let other researchers learn from them what they have found out over the past 30
years of work in this field. From the following case, ideas for parameters to follow
should be gleaned.
Intriguing Case Presentation:
http://ntp.niehs.nih.gov/files/Nagy_Mold_w_attach.pdf
To NTP/NIEHS
I would like to as brief as possible to be as effective as I can. I will
summarize my personal experience as a physician (trained at Cornell Medical
College) with Emergency Medicine and Surgical background who became deathly ill
in California from a mold exposure. I am now relatively well and have been
traveling the country over the past year speaking to my experience, and how
environmental medicine practice alone is able to treat and diagnose these patients.
My hope is that through your research the obvious symptoms that millions of us
develop can be substantiated. From there diagnoses and treatment can be
facilitated once the veil of secrecy and denial has been lifted about whether these
patients are in fact ill from mold in the first place.
When I speak to the public, the most important concept that I explain is
that I became very ill from Environmental Illness induced by mold (other chemicals
can cause it but mold is probably the biggest offender now) and it gives me a new
understanding of the ubiquity of these conditions in their mild forms in a large
proportion of society. We are all on a 1 to 10 continuum of being environmentally
affected. I may have been a 10. But no one is a zero. We are all exposed to car
exhaust on the way to work, the dog and cat at home, pollen in the air and chemicals
in stores. It is how we react with headache, fatigue, irritability, dysautonomia,
asthma, itching, flushing, anaphalaxis that labels us as more or less reactive or
sensitive. Many people have symptoms that are covered up or masked and they do
not realize they are sensitive while in a toxic environment until they get away for
about a week then they blossom and become sensitivie to mold, their home, and
chemicals. This is one of the discoveries made over 60 years ago by Rinkle in his
study of his own allergy to eggs. He was raised on eggs every day. When he finally
stopped eating them for 5 days as an adult he developed intolerable responses
(syncope) to them when reintroduced. Thus was born the field of environmental
medicine I suppose.
Now, I would like to say that your panel of experts should include at a
minimum 5 members of AAEM (The American Academy of Environmental
Medicine) many of whose members are versed in this clinical field. I would suggest
off hand: Bill Rea M.D (Environmental Health Center of Dallas), Jean Monroe M.
D. (Hertfordshire, England), Kalpana Patel (Buffalo New York). In addition
Michael Gray M.D. has studied many patients as have Kaye Kilburn Phd. and
Aristo Vojdani. They are not practicing environmental medicine and should
utilized for Biomarker assessment and Neurologic testing guidance be the subjects
rats or human. My feeling is that there is no point in avoiding the people that admit
the neurotoxicity and development of chemical sensitivity and immune and
autonomic dysregulation in your quest for truth. Rather you should employ them
and let other researchers learn from them what they have found out over the past 30
years of work in this field. From the following case, ideas for parameters to follow
should be gleaned.
Intriguing Case Presentation:
http://ntp.niehs.nih.gov/files/Nagy_Mold_w_attach.pdf
-
I have been here before, a long long time ago and now I am back.Forgive me for not just saying what I want to say,even under a triple dose of antidepressants it is still raw and seeping and I am hesitant at revealing it as at least under the bandages around my heart I don,t have to look at how raw and wounded.My child was cleaved from my heart by his own actions. my child of ten,turning eleven...
-
theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
Those that want to fight look no further.
Dr. Nagy was presenting to the National Institute of Environmental Health - which is part of the CDC.
What Nagy didn't say here (probably because it hadn't happened yet) was that Dr. Rea has been under attack from the Texas Medical Board in an effort to suppress his work.
Dr. Vodjani's lab in California (which did quite a lot of mold testing) was recently shut down on a complaint from a Dr. in another state who claims not to have ever even met him - but who holds a CDC contract and testifies against mold patients for money.
There is an extremely disturbing pattern of of mold-literate scientists and physicians being attacked by state licensing boards during the past few years.
She also could not have told them at that time that CDC is funding the association of Environmental and Occupational Clinics, which is holding a conference in February at UCLA. Continuing Medical Education credits will be given for attending a mock trail involving a mold case, complete with attorneys and physicians playing the part of defense expert witnesses (who do this in real life for a living). AOEC is being funded to provide pediatric environmental health clinics, of all things! Kids get ME/CFS, too.
Just last month, the authors of a related article in the International Journal of Occupational and Environmental Health were attacked on the AOEC's listserv for speaking out. (That listserv is hosted on servers owned by the University of North Carolina.)
This business with these physicians being targeted is not unlike what happened when the early research on mold done by Ruther Edzel and Dorr Dearborn (the pulmonary hemosiderosis cases in Cincinnati) was officially castigated by the CDC while it was inviting industry reps in to set the National Occupational Research Agenda. This year, that sub-agency was slated to receive 92 million dollars in funding from Congress.
The CDC will tell you that you could be 'allergic' to mold, so clean it up with bleach - but they won't tell you they allowed their own premises to become so contaminated with mold that a number of workers became ill from it - so ill that men in hazmat suits had to be brought in to make repairs - yet they left workers in the building while it was being done. ME/CSF was just one result. It took a Freedom of Information Act request from an attorney and the better part of a year to get the documentation.
In an article in the Atlanta Journal Constitution earlier this year, CDC Director Julie Gerberding did not admit to that case. (I have the documentation in my possession showing that her office was well aware of the problem.) But she did admit there were environmental problems in another building - the one that house the CFS program. Workers were left in that building as well, while she proclaimed a "holistic concern for all workers at CDC".
Nice, eh? Your tax dollars at work. And now you know why I simply cannot support funding the CDC any further. The place has become a congressional money pit, far more concerned with serving industry's desires for greater profits and campaigning for ever more funding than with protecting the public health. I do not refer to the individual dedicated researchers still working there. I refer to the agency itself. I'm glad Dr. Nagy spoke out. I don't think anyone was listening. I'm pretty sure they didn't want to listen. But it needed to be said then, and it needs to be said now.
As an added bonus, I discovered I had a latex allergy when I used playtex gloves to wash the mold away, lol. Sometimes you just can't win. Thanks for the information...hugs jilly
What Nagy said needed to be said then. What Serena said needed to be said now. The simple fact that Nagy and others are making is that mold is real, it is ubiquitous, it's all over, it MAIMS -- as is the case w/ CFS and its cousins -- and it KILLS -- as is the case w/ CFS and its cousins.
The simple and deadly fact, is that the FACT about the secrecy is being denied. Drs. and gov't. know that the CDC is masking the reality. Corporate gov't. 'thinks' it is cheaper to let a few die than to open and fix the problem.
The problem behind this? It's not getting better. More ppl are getting sick. And dying. So the 'thinking' behind the Drs. and gov't.? It ain't there! And if you try to make someone understand the thinking, that mold is killing the world, they will view you are so radical that you need psychiatric help. Or at a minimum, if you are a physician? That you need your license revoked. And, even if you are a live exemplar, like Nagy, it does not matter. You will still be ignored. You'll make it a few years. Maybe. Your name and speeches will be in the quieted medical news. Until you literally cannot stand anymore. That's what's happened to a number of physicians who've become ill from mold, and CFS, and tried to expose the medical profession.
You can stand behind sound theory. Like Gerberding did when she took office. Boy, she touted her 'holistic' approach to medicine like there was no tomorrow. I was suckered in when she first was given her current post. "Oh, dearest Julie Gerberding. I'm so glad you're a holistic thinker!" She spoke at a CFS conference and vowed to help us poor souls w/ CFS! The stupid part was I believed she might help us! Once she was in her position for a while? To get the reality? She became one of them. One of them, against all of us.
Ok. So what do we do? We make as many situations available to disclose our story. In the smallest way. In whatever way we can. In whatever way any of us. In whatever you can.
At first, when I saw how many ppl were STILL being diagnosed with CFS, I was a little surprised. That's when I began to see CFS as part of a larger picture. Involving multiple chemical sensitivity. Involving environmental illness. Involving politics.
It's so impt. for you to feel like this illness is NOT your fault b/c it's not. Part of it is the environment. A bigger part of it is, the gov't.
A very big part of this is undertstanding that the CDC is NOT uninformed. It has become an active participant in disseminating medical DISinformation, in direct contravention of its stated mission.
So is this all one big conspiracy theory? Nope. Not at all. I don't know who shot Kennedy, and I don't care about UFO's. That's not my thing. The CDC's part in all this comes down to allowing industry to steer the Public Health ship, and giving them funds to do even more of it. It's being done in broad daylight - if you can stand digging through the public information and following the money and influence trail. All that so-called governmental sunshine actually requires burning quite a bit of midnight oil, as it turns out.
A few years ago, the Director of the National Institute of Occupational Safety and Health retired and became a consultant with a lab that claims to do mold testing (they do, but it's very poor quality work). Guess which lab did the testing at CDC's own moldy building?
In 2002, the Deputy Director retired and became part owner in an environmental risk management firm. They testify against mold victims for money.
As the Deputy Directory was retiring, he was asked by the American College of Occupational and Environmental Medicine to write a paper on mold. That is now their official position paper on the subject. Although the paper gives dozens of heavy-sounding references, the premise that mold toxins can't harm anyone are based on their own little theory derived from a single rat study that had nothing to do with what we're talking about here. None of the other references actually support the paper. It didn't hurt that the former Deputy Director also held the rank of Assistant Surgeon General in the Public Health Service - although he is not a physician, and had no particular background in anything related to mold before this. His job was - ta da! - getting papers published! But it looks very impressive to the courts. So they were set.
From 1996 to the present, ACOEM and its sister organization, AOEC have had representatives sitting on a major NIOSH committee at CDC, dedicated to determining the National Occupation Research Agenda. They were then in an excellent position to know all the governmental players and steer the research agenda away from anything related to mold. They were highly successful at this.
So the next question is ok, so why would they do all that? The reason is simple. Money. ACOEM is insurance-driven. That's who pays the bills, whether it comes from the physician members' pockets or the insurance companies directly. ACOEM also writes the Standard of Care for the Worker's Comp programs in certain states - giving them a monstrous amount of power over regular people's health care choices.
How did they get in that position? Partly, they do this by way of claiming to be an authority on Evidence Based Medicine - which basically means, if it's not in the research literature, it didn't happen and doesn't work. This works out pretty neatly, if you can not support legitimate research on the one hand, and can get retired CDC people to write your own version of the literature on the other.
Who pays comp claims? Insurance companies. Who doesn't want to pay chronic illness claims in general and mold claims in particular? Insurance companies. Who supports ACOEM? Insurance companies. Who pays some these same players to testify against mold victims? Yep. Insurance companies.
When an activist researcher caught the environmental risk management company's owners saying one thing in the courts in one state, and something else in another, she called them on it in print. So they promptly sued her for libel to shut her up (which didn't work).
When the Wallstreet Journal published the story on the front page after months of investigation, the then-president of ACOEM who was also the immediate past AOEC) had a screaming fit about it all. (He testifies against mold patients, himself.)
That same activist co-authored an article in the last edition of the International Journal of Environmental Health...and all hell broke loose, apparently. Accusations were made on AOEC's listserv that she was a paid shill for the plaintiff industry and other ridiculous comments were made. She was not allowed to respond, though, because she is NOT a health care professional, if that makes any sense. ACOEM started threatening to sue the journal as well. which - would be pretty dumb. For an outfit that sells literature-based medicine to go around suing publishers of literature? Not too smart.
How does this all amount to a program of medical disinformation aimed at actual physicians? Well, AOEC and ACOEM both deliver CME courses at major teaching hospitals and universities. I've seen some of the course material. Do you really think they are going to tell physicians this stuff is harmful? Do you really think they do NOT cast us as a bunch of paranoid environmentalist crazies? If not, think again.
But wait! There's another twist. The past AOEC and ACOEM president? NOW he's got a slot at Homeland Security - telling the government how occupational medicine should be telling the government how to manage environmental threats in the workplace. Curiously, he wrote a paper that contained no medical information whatsoever - though it went on and on about managing worker 'concerns' and reducing liability for business. Always on the job, that guy.
So where is CDC on all this? Silent. Dead silent. Even though they have active duty personnel holding memberships in ACOEM (hmmmm?) and are directly funding AOEC. Looks like the holistic cat got their tongues. It might just be too much to hope that she finally understands that this is Public Health, not Industrial Health, and we ARE that Public.