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Post by shubot on Aug 3, 2008 10:40:42 GMT -5
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Post by shubot on Aug 3, 2008 11:11:22 GMT -5
Does anyone out there think they will admit they "found something" in their study report?
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Post by morph on Aug 3, 2008 11:37:11 GMT -5
They found that idiots of a feather flock together, I already can hear the CDC speaking to congress, there will always be a certain percentage of people in any population with delusion. I totally agree with them, that population is doctors. LOL.
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Post by bugsy on Aug 3, 2008 22:35:32 GMT -5
well shubot if they don't admit that they found something they will be opening themselves up to major litigation. I'm sure there are laws that govern taxpayer sponsored research of this type. This is what the Supreme Court is set up for, just this type of case. night. Faith
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Post by bugsy on Aug 4, 2008 1:19:51 GMT -5
This is my last post. I need some time to heal away from the computer.
If you want a way to prove your case this may be the answer you are looking for.
Subject: NIH Undianosed Diseases Program
May 19, 2008
Dr. Doug Buckner & the Morgellons Research Foundation are pleased to announce their participation in today's NIH Undiagnosed Diseases teleconference during which Dr Buckner advocated for continued research into the cause of Morgellons Disease. Participants of this teleconference were aware of Morgellons disease and voiced support for further research into the condition.
The purpose of the teleconference was for NIH to share information about their Undiagnosed Diseases Program, a pilot program aimed at answering questions about medical conditions which have eluded diagnosis. Please note that patients with this, and any other, undiagnosed disease can be considered for this special program by first being referred to NIH by their physician or health-care provider. Although only 50-100 patients will be accepted into this program annually, we feel that it is a wonderful opportunity for all undiagnosed patients. Please see links below for additional details on this program including strict eligibility requirements.
If you are referred to this program, and would like to share any information with us, we would be very happy to hear from you. Best wishes, Morgellons Research Foundation
Frequently asked Questions: Undiagnosed Diseases Program:
Undiagnosed Diseases Program Some patients wait years for a definitive diagnosis. Using a unique combination of scientific and medical expertise and resources at the National Institutes of Health (NIH), the Undiagnosed Diseases Program pursues two goals:
To provide answers to patients with mysterious conditions that have long eluded diagnosis To advance medical knowledge about rare and common diseases
The program is trans-NIH in scope. It is organized by the National Human Genome Research Institute (NHGRI), the NIH Office of Rare Diseases (ORD) and the NIH Clinical Center. Many medical specialties will contribute expertise needed to conduct the program, including endocrinology, immunology, oncology, dermatology, dentistry, cardiology, and genetics, which are represented among the dozens of participating senior attending physicians who may participate in the program's clinical research. Any longstanding medical condition that eludes diagnosis by a referring physician can be considered undiagnosed and may be of interest to this clinical research program. Of the total number of cases that may be referred to this program, a very limited number will be invited to proceed in the study at the discretion of the program's medical team.
If you are interested in participating in this clinical research program, discuss the option with your primary physician or health-care provider (nurse practitioner or physician's assistant). Information specialists at the Clinical Center's Patient Recruitment Call Center (1-866-444-8806) can provide more information about eligibility and what kinds of medical information referring physicians must submit for review by the program's medical team. You or your health-care provider can call. Patients must be referred by a physician or health-care provider. Information your physician must provide directly to NIH includes: A summary letter describing your condition, when it was first noted and your current health status A list of treatments and medications that have already been tried and their effects Copies of reports and results of pertinent diagnostic tests, along with X-rays, MRI results, and other imaging records/studies. Copies of the actual imaging studies are preferred.
Information for Patients
Information for Health Care Providers
NIH Launches Undiagnosed Diseases Program
NIH Office of Rare Diseases (ORD) - Undiagnosed Diseases Program
For more information call: 1-866-444-8806 Referrals to the program for potential acceptance must be made by primary care providers.
Morgellons Research Foundation Website ---------------------------------------
Faith
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Post by sadsack on Aug 5, 2008 15:00:00 GMT -5
Faith - I know someone who went through all the work, including getting medial records, etc, to participate. You'll never guess what happened. He was turned down because HE HAS A DIAGNOSIS - MORGELLONS!!! I sure would like to know how we, collectively, could initiate some legal proceeding in anticipation of the verdict from the cdc that we all fear - DOP. SS
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Post by morph on Aug 5, 2008 16:23:20 GMT -5
Yes, they may not want to have pre existing diagnosis for certain reasons, I do believe the main transfer method is sexual, birth, and medical procedures, in paticular blood transfusions. It is not seen quickly after sex because it takes so long to manifest, with victims of birth infestation, the problems are severe and complex. If you pay attention to newborns and other people skin you will see we are the tip of the iceberg, we have strong skin problems but most people that suffer this have inward multiple maladys, still you can see it on their skin. On babys, you will see red specks, white bumps, keratosis, possible small grouths. If the woman that says her children observed her children well at birth and saw these or other skin problems and lists the childrens other problems then maybe others will read this and look for teltale signs at birth. As always conjecture comes before facts.
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Post by morph on Aug 5, 2008 17:19:56 GMT -5
I need to proof read everything I write, some of the problem is being a man, you ladies know we can not do two things at once, ljust imagine how confused it becomes when you aren't an english major, can't type and got a slight case of brain fog. Please forgive my inept letter writing skills.
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Post by skytroll on Aug 5, 2008 22:27:33 GMT -5
The CDC is just the beginning on the way up to NIH. We have the HHS standing in the way right now. The CDC can only do surveilance, and report on whether a study can be done. So, is only the first step. They are so ordered to do many things by the HHS. The HHS and the DHS often put stoppers on research that is needed for various syndromes. Even if they say we are DOP, which is unlikely, because they have seen the physical evidence, they cannot do the research and the investigation of this disease, the NIH has to and the AMA should be involved, so this can be studied at university medical/scientific levels.
Do you think the DOP from CDC will stop us? DON'T THINK SO!
Skytroll
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Post by meredith on Aug 6, 2008 6:32:55 GMT -5
Faith - I know someone who went through all the work, including getting medial records, etc, to participate. You'll never guess what happened. He was turned down because HE HAS A DIAGNOSIS - MORGELLONS!!! I sure would like to know how we, collectively, could initiate some legal proceeding in anticipation of the verdict from the cdc that we all fear - DOP. SS Sadsack your friend must be quite amazing to receive such a expedient turn around time from a governmental agency. The above letter by the MRF appears to be dated May 18th of this year. It is now early August. Your friend must be very fast and organized to have their physician collect all of their medical records and have them sent off to the NIH and receive such a rapid rejection response. That is incredible to me. Meredith
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Post by shubot on Aug 6, 2008 22:52:26 GMT -5
FAITH: I am so sorry you are leaving the board, I will miss you. I understand you need to heal. Just having the Morgs is bad enough, but having to recover from you resent surgery must be taking it over the limit. I hope you will return when you are better. You will be in my prayers. FAITH: I now understand that the hold up in these things are not from the CDC, but from others that have the power to slow it down or stop it. Like this article " the White House Review" cut the original report from 14 pages down to only 4 pages and all the information was removed!! I apologize for being so negative. www.commondreams.org/archive/2007/10/24/4772/FAITH: Thank you for all of the information on NIH. Thank you for all of the information and support you have provided. Now go get yourself well. SKYTROLL: Thank you for your information on the NIH, HHS, DHS. It all makes more sense now. SS: I am so sorry to hear about your friend, what a let down! Best to you all shubot
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Post by sadsack on Aug 9, 2008 15:10:06 GMT -5
Meredith - He is a wealthy lawyer, with a lot of medical support. Once the doctor prepares all the paperwork and submits it, the review process is pretty quick. I don't think 3 months is such a short time. My reason for posting that was I found it ironic that the NIH would reject the application because his condition already had a diagnosis - a diagnosis that actually doesn't officially exist - that's why the cdc is studying it, to find out whether or not it does! Maybe the mistake the doctor made was to list a diagnosis, because if he were admitted to the NIH study with all the symptomatology and no diagnosis, they would have studied it WITHOUT having a pre-conceived agenda. I hope someone applied without labeling it. SS
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Post by meredith on Aug 10, 2008 16:04:54 GMT -5
Meredith - He is a wealthy lawyer, with a lot of medical support. Once the doctor prepares all the paperwork and submits it, the review process is pretty quick. I don't think 3 months is such a short time. My reason for posting that was I found it ironic that the NIH would reject the application because his condition already had a diagnosis - a diagnosis that actually doesn't officially exist - that's why the cdc is studying it, to find out whether or not it does! Maybe the mistake the doctor made was to list a diagnosis, because if he were admitted to the NIH study with all the symptomatology and no diagnosis, they would have studied it WITHOUT having a pre-conceived agenda. I hope someone applied without labeling it. SS That is a great idea sadsack, the sending in the application WITHOUT labeling it. This is important to know. Or we need to find a rare and MIDIAGNOSED disease program. Maybe it is all in the wording and diagnosis. It's a slippery slope. We are d**ned if we do and d**ned if we don't with this disease and it's relationship with the medical community. I will cross all of my t's and dot all of my i's in the meantime if that is what I need to do. Thank you. Meredith
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Post by meredith on Aug 10, 2008 16:05:22 GMT -5
Meredith - He is a wealthy lawyer, with a lot of medical support. Once the doctor prepares all the paperwork and submits it, the review process is pretty quick. I don't think 3 months is such a short time. My reason for posting that was I found it ironic that the NIH would reject the application because his condition already had a diagnosis - a diagnosis that actually doesn't officially exist - that's why the cdc is studying it, to find out whether or not it does! Maybe the mistake the doctor made was to list a diagnosis, because if he were admitted to the NIH study with all the symptomatology and no diagnosis, they would have studied it WITHOUT having a pre-conceived agenda. I hope someone applied without labeling it. SS That is a great idea sadsack, the sending in the application WITHOUT labeling it. This is important to know. Or we need to find a rare and MIDIAGNOSED disease program. Maybe it is all in the wording and diagnosis. It's a slippery slope. We are d**ned if we do and d**ned if we don't with this disease and it's relationship with the medical community. I will cross all of my t's and dot all of my i's in the meantime if that is what I need to do. Thank you. Meredith
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