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Post by gracebeours on Aug 17, 2007 12:55:34 GMT -5
A formal letter to CDC was delivered to them by Morgies prior to the Atlanta Rally which was intended to open up a dialog between Morgies and CDC regarding the upcoming research study. A copy of the press release and the letter of "suggestions" is available for your review below. We are encouraged that this effort may lead to a dialog between us and CDC.
I would encourage all of you to remain positive and hopeful and pray for a fruitful outcome. During the next few weeks I also strongly encourage all of you to try to keep your comments on this board about CDC positive so that they can see we are sincere about establishing an honest and meaningful relationship during the research.
I believe the actions taken will go a long way towards getting us where we need to be. If you have questions, please PM me.
Please review the letters and press release.
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Post by gracebeours on Aug 17, 2007 15:18:48 GMT -5
Here is copy of letter to CDC
EXECUTIVE SUMMARY OF RECOMMENDATIONS TO CDC REGARDING MORGELLONS¡¦ STUDY (PUT DATE HERE) (PUT MEETING PARTICIPANTS HERE)
Item # 1. Oversight by professionals who have knowledge of Morgellons would enhance the process and outcome.
Item # 2: Adequacy of lab tests should be reviewed.
Item #3: Criteria used in CDC¡¦s selection process of patients to participate in this study should be reviewed and approved by the Oversight Committee. The Oversight Committee would ensure patients selected have Morgellons. Patients recommended by the Oversight Committee should be considered.
Item # 4: CDC should solicit advice from other physicians in the medical community regarding the Morgellon¡¦s study.
Item #5: For quality control purposes, laboratory tests and other protocol should be performed by more than one lab.
Item #6: Include validated existing studies in testing protocol.
Item #7: Routinely review testing protocol.
Item #8: A moratorium on the diagnosis of DOP by physicians should be put into place by CDC pending the outcome of this study.
Item #9: Universal safety protocol should be maintained when working with Morgellons patients, consistent with the handling of other diseases.
Dear ¡§CDC¡¨ Representative:
Thank you for taking on the complex task of determining the causes and validity of what has come to be called Morgellons. We represent a concerned group with Morgellons that are both delighted and concerned regarding your current announcement that Kaiser Permanente has been chosen to perform testing on Morgellons¡¦ patients in the near future. It is further our understanding that the purpose of this testing is to determine the core causes for the suffering caused by Morgellons patients in order to assist in the eventual cure of this debilitating syndrome.
Many Morgellons sufferers are elated that your offices are finally doing something that may eventually provide them relief. This testing has been a long time coming for most of us. While we are very grateful to you for stepping up to the plate, we also believe that this may be the best opportunity for the Morgellons¡¦ community to provide CDC with important recommendations, as indicated herein. We believe that the following enhancements to your testing program will ensure a successful and believable result. As taxpayers, citizens and sufferers of Morgellons (the government is spending tax dollars on this program), we desire assurances that the money will be spent judiciously by assuring us that our concerns/recommendations are adequately acknowledged, addressed and included into your testing protocol wherever feasible. We want your study to be a win-win for those performing the tests and for those Morgellons sufferers relying on the results.
As the CDC is aware, the Morgellons community has historically displayed much distrust of CDC: „X due to the long delay in starting this study, „X and the hiring of Kaiser Permanente, of whom many believe have a serious conflict of interest. The community is aware of many diagnoses of DOP by doctors working for Kaiser Permanente, which is clearly a conflict (protecting physicians within Kaiser Permanente who have misdiagnosed patients versus an arms length contractor).
The intent of the recommendations and concerns raised herein is meant to bridge that gap so we will all be successful.
Concern/Recommendation Item # 1. Oversight by professionals who have knowledge of Morgellons would enhance the process and outcome.
Because neither CDC nor Kaiser Permanente has any background in dealing with the Morgellons community, we strongly recommend an Oversight Committee. This committee should be composed of three or more physicians/health care representatives who are already knowledgeable about Morgellons and have the trust of the Morgellons Community. This Oversight and Advisory Committee (hereafter called ¡§Oversight Committee) will make written recommendations to CDC regarding:
„X lab tests to be performed, „X patient selection process, „X the necessity of having monthly (or more) meetings with CDC and Kaiser Permanente project managers to review status of testing and findings, „X adequacy of processes and protocols, as recommended to be performed and performance standards, „X other recommendations as Oversight Committee deems appropriate, „X CDC should consider maintaining and delivering to the Oversight Committee the detail of all recommendations it will not implement with explanations in writing, along with protocols, status, findings, etc.
To ensure independence there should be Minutes maintained of all meetings between CDC, Kaiser Permanente, and the Oversight Committee, which shall be considered Open Records. All recommendations, findings, status, etc. of those participating in the Morgellons project should be maintained in the formal minutes in writing and well documented with support.
Concern/Recommendation Item # 2: Adequacy of lab tests.
Many of the lab tests currently listed by CDC to be performed on Morgellons patients are fairly routine and therefore, have not historically been successful in identifying the source of Morgellons. It is important to the Morgellons communities that CDC and Kaiser Permanente (or any other vendors) work with doctors on the Oversight Committee, as they have treated Morgellons and are familiar with the myriad of symptoms in order to identify other lab tests or medical procedures to perform that will get to the truth of Morgellons.
Concern/Recommendation Item #3: Criteria used in CDC¡¦s selection process of patients to participate in this study should be reviewed and approved by the Oversight Committee. The Oversight Committee would ensure patients selected have Morgellons. Patients recommended by the Oversight Committee should be considered.
Selection process criteria to determine patients used in testing shall be reviewed and approved by the Oversight Committee. Additional Non-California patients may be added, as endorsed by the Oversight Committee.
Concern/Recommendation Item # 4: Acceptance of advice from other physicians in the medical community regarding the Morgellon¡¦s project.
Parties involved in this Project shall solicit, accept and review advice/input submitted by the medical community across the country (those who have treated or have knowledge of Morgellons). Advice shall be reviewed and documented by the full committee (CDC, Kaiser Permanente, and the Oversight committee.
Concern/Recommendation Item #5: For quality control purposes, laboratory tests and other protocol should be performed by more than one lab.
In order to ensure accuracy of testing, there should be more than one laboratory (unrelated) that perform tests. This will ensure quality control and accuracy of lab findings (double blind study).
It should be noted that Randy Wymore has offered to participate in testing. He has been working with Morgellons for over three years and including him in this study will undoubtedly save both time and money. Additionally, the Morgellons community is supportive of the work done by Dr. Wymore.
Concern/Recommendation Item #6: Include validated studies in testing protocol.
Certain testing already performed on Morgellons patients show a significant correlation between Morgellons patients and test findings. These studies should be solicited and explored openly by CDC to ensure adequacy and comprehensive findings. These include work done involving agro bacterium, Lyme disease, brain scan abnormalities, etc. There are others to consider in your initial protocol. These studies should be discussed fully by CDC, Kaiser Permanente project managers, and the Oversight Committee (#1).
Concern/Recommendation Item #7: Routine review of testing protocol.
All parties involved in this study should routinely review findings as they are available and adjust the testing protocol based on concrete evidence revealed during this process.
Concern/Recommendation Item #8: A moratorium on the diagnosis of DOP by physicians should be put into place by CDC pending the outcome of this program.
To reduce the harmful results caused by physicians who have misdiagnosed Morgellons¡¦ victims as DOP, CDC should publish a request to the medical community to put a moratorium on DOP diagnosis pending the findings of this study.
Concern/Recommendation Item #9: Universal safety protocol should be maintained when working with Morgellons patients, consistent with the handling of other diseases.
Although there is no solid evidence to date that would tell us that Morgellons symptoms are communicable, we believe all active participating medical personnel should utilize universal public health precautions.
***************
On behalf of the majority of the Morgellons community, we thank you for the opportunity to review these important matters with you. By separate cover, we will be providing a list of Physicians and other medical personnel for you to consider for the Oversight Committee. The physicians on this list are intimately familiar with Morgellons, which should enhance the final results of this important study.
Our group has graciously requested Dr. Greg Smith and Randy Wymore to be our liaisons to discuss these matters in more detail. We look forward to working with you in any way we can to ensure that the results of your study are successful, thorough and complete.
Sincerely,
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Post by gracebeours on Aug 17, 2007 15:20:16 GMT -5
Press Release
"FIBER" DISEASE SUFFERERS RALLY FOR A PARTICIPANT ROLE OVER CDC RESEARCH
On Friday, August 17, there will be a regional rally at 1600 Clifton Road, Atlanta, across from CDC, from 10:00 a.m. to 12 noon. After years of denial by the CDC that this disease is real, the CDC has commissioned the first Morgellons research study to begin soon and set to be conducted by a private corporation.
The Morgellons community is encouraging the CDC to allow and accept a committee of Morgellons’ sufferers and medical experienced personnel to participate in the research study to ensure the research program adequately addresses the issues raised by the Morgellons’ community.
Greg Smith MD, a Morgellons sufferer, remarked “We applaud CDC for implementing research on Morgellons, but strongly believe that due to our expertise and the controversial nature of this disease, an oversight roll composed of Morgellon’s sufferers would enhance the research project. This group would work directly with CDC and the company assigned to perform testing. Our extensive knowledge of this disease will save time and taxpayer money by encouraging the right tests and protocol for getting to the bottom of this dreaded, rapidly spreading illness.”
The sufferers of Morgellons are plagued by unusual fibers coming out of their skin, sores that heal slowly, fatigue, brain fog and numerous other symptoms. The disease is worldwide with over 10,000 known sufferers in the U.S. and this number is growing daily.
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Post by michellenh on Feb 8, 2008 17:13:13 GMT -5
was wondering if the morgellons team is going to be invited to join in the investagation? any word on that yet???
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Post by loopypnw96 on Dec 18, 2017 21:41:58 GMT -5
was wondering if the morgellons team is going to be invited to join in the investagation? any word on that yet??? My name's Jeanette. The only thing I have left to live for is to fight for those who suffer with Morgellons as I do. This is the only purpose in life I can consider. There's nothing left. There are creatures (for lack of a better word) living and breeding in my body. Eating me alive. That's the only reality in my life.
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