Post by bb on Aug 7, 2005 13:34:11 GMT -5
I'm gonna get this right if it kills me..............
August 6, 2005
The White House
ATTENTION: Mrs. Laura Bush
1600 Pennsylvania Avenue NW
Washington, DC 20500
Dear Mrs. Bush:
I wanted to let you know I did receive a reply from the NIAMS (National Institute of Arthritis and Musculoskeletal and Skin Diseases), a division of the U.S. Department of Health and Human Services. I am surprised that they responded so quickly, and I can only assume that it was due to your influence, and I thank you.
The NIAMS has washed their hands of the issue, and recommended that I contact the NIAID (National Institute of Allergy and Infectious Diseases), also within the U.S. Department of Health and Human Services. I am writing to them today, however I have to wonder if they will respond as quickly as the NIAMS did without your intervention. Would you be willing to once again go to bat for the many people who suffer the indignity of being infested with this mysterious disease being called Morgellons? Will you please forward my correspondence to that department and request that they respond to the issue at hand? I can assure you I am sharing everything I learn with the Morgellons community.
The NIAMS also states, as the CDC has said, that we should contact researchers ourselves to find someone interested in unraveling this mystery. That is a daunting task for sick people, but it is a challenge I am taking on. I am going to prepare packages to send out to researchers. It just seems to me that the people who have access to researchers could do this huge job for us. Why is real life not like the televison show, CSI? They swoop in, take samples, and solve the puzzle. In reality an extremely sick person with no energy and a foggy-brain has to become researcher, activist, and self-medicator in order to try to survive this horror.
We not only want to survive, we want to spare others this wretched life that we now live. We believe Morgellons is spreading slowly throughout our county. Many people with the condition have resorted to becoming reclusive in order to spare others. It's a horrible, torturous, and lonely existance. To get a hair cut, to have a dental appointment is impossible. We cannot live with ourselves if someone contracted this from us and we did nothing to prevent it. We also live with the knowledge that others, even family, believe we are insane. They tell us that we are too obsessed with the subject. We try to explain that we live with this 24/7, it is impossible to not be obsessed with it, but no one can really understand.
The CDC says they encourages the submission of samples. How can anyone, other than an extremely well-trained person, take samples of an unknown organism? The samples that have been sent in thus far have been disregarded as nothing. That is because we do not know how to harvest these samples; no one does. We need top-notch professionals doing high-tech research on our skin.
Is this really the way America responds to a new, mysterious, dangerous disease? We expect the sick people to find help themselves? Why wouldn't the CDC go to a Morgellon home and collect samples themselves? The only way we are going to figure this out is with government intervention.
People all across America are running into the same problem. When we arrive at our doctor's office complaining of symptoms of intense itching, and feeling like bugs are crawling and biting our skin, we are full of hope. Our mind knows that this is OBVIOUSLY a disease or parasite. We put our trust in the medical system we have always turned to in times of health crisis. However, we leave our doctor's office deflated and devoid of hope. Our mind knows that the doctor is wrong and worse, uncaring. Each doctor's visit squelches hope more and more, until all hope is gone. People are committing suicide because the burden, and the endless torture and horror of this scourge is too much, especially when you add in the hopelessness CREATED by the unresponsive doctors.
If we manage to get through the suicidal stage of this disease, we go on to do our own research on the internet. It takes no time at all to realize we have been left out in the cold. There are MANY medical condtions that cause itching and skin rashes. Why is it that we are being diagnosed as dillusional without so much as a skin scraping? What is wrong with this picture? Everyone has a limited knowledge of parasites, but apparently medical doctors don't even want to acknowledge their existance because we cannot even get referrals to specialists.
Our governent needs to come up with a plan, to deal with new diseases in a much more responsibile manner, that doesn't put extremely sick people in charge of helping themselves.
thank you for your time,
Becky Bailey
beckybailey2892@hotmail.com
August 6, 2005
The White House
ATTENTION: Mrs. Laura Bush
1600 Pennsylvania Avenue NW
Washington, DC 20500
Dear Mrs. Bush:
I wanted to let you know I did receive a reply from the NIAMS (National Institute of Arthritis and Musculoskeletal and Skin Diseases), a division of the U.S. Department of Health and Human Services. I am surprised that they responded so quickly, and I can only assume that it was due to your influence, and I thank you.
The NIAMS has washed their hands of the issue, and recommended that I contact the NIAID (National Institute of Allergy and Infectious Diseases), also within the U.S. Department of Health and Human Services. I am writing to them today, however I have to wonder if they will respond as quickly as the NIAMS did without your intervention. Would you be willing to once again go to bat for the many people who suffer the indignity of being infested with this mysterious disease being called Morgellons? Will you please forward my correspondence to that department and request that they respond to the issue at hand? I can assure you I am sharing everything I learn with the Morgellons community.
The NIAMS also states, as the CDC has said, that we should contact researchers ourselves to find someone interested in unraveling this mystery. That is a daunting task for sick people, but it is a challenge I am taking on. I am going to prepare packages to send out to researchers. It just seems to me that the people who have access to researchers could do this huge job for us. Why is real life not like the televison show, CSI? They swoop in, take samples, and solve the puzzle. In reality an extremely sick person with no energy and a foggy-brain has to become researcher, activist, and self-medicator in order to try to survive this horror.
We not only want to survive, we want to spare others this wretched life that we now live. We believe Morgellons is spreading slowly throughout our county. Many people with the condition have resorted to becoming reclusive in order to spare others. It's a horrible, torturous, and lonely existance. To get a hair cut, to have a dental appointment is impossible. We cannot live with ourselves if someone contracted this from us and we did nothing to prevent it. We also live with the knowledge that others, even family, believe we are insane. They tell us that we are too obsessed with the subject. We try to explain that we live with this 24/7, it is impossible to not be obsessed with it, but no one can really understand.
The CDC says they encourages the submission of samples. How can anyone, other than an extremely well-trained person, take samples of an unknown organism? The samples that have been sent in thus far have been disregarded as nothing. That is because we do not know how to harvest these samples; no one does. We need top-notch professionals doing high-tech research on our skin.
Is this really the way America responds to a new, mysterious, dangerous disease? We expect the sick people to find help themselves? Why wouldn't the CDC go to a Morgellon home and collect samples themselves? The only way we are going to figure this out is with government intervention.
People all across America are running into the same problem. When we arrive at our doctor's office complaining of symptoms of intense itching, and feeling like bugs are crawling and biting our skin, we are full of hope. Our mind knows that this is OBVIOUSLY a disease or parasite. We put our trust in the medical system we have always turned to in times of health crisis. However, we leave our doctor's office deflated and devoid of hope. Our mind knows that the doctor is wrong and worse, uncaring. Each doctor's visit squelches hope more and more, until all hope is gone. People are committing suicide because the burden, and the endless torture and horror of this scourge is too much, especially when you add in the hopelessness CREATED by the unresponsive doctors.
If we manage to get through the suicidal stage of this disease, we go on to do our own research on the internet. It takes no time at all to realize we have been left out in the cold. There are MANY medical condtions that cause itching and skin rashes. Why is it that we are being diagnosed as dillusional without so much as a skin scraping? What is wrong with this picture? Everyone has a limited knowledge of parasites, but apparently medical doctors don't even want to acknowledge their existance because we cannot even get referrals to specialists.
Our governent needs to come up with a plan, to deal with new diseases in a much more responsibile manner, that doesn't put extremely sick people in charge of helping themselves.
thank you for your time,
Becky Bailey
beckybailey2892@hotmail.com