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Post by dkushner on Sept 21, 2012 4:11:17 GMT -5
I got my reply from NIH as well: Dear Mr. K......, You sent an e-mail to the Genetic and Rare Diseases (GARD) Information Center about Morgellons. You asked why this condition was listed as a duplication or trisomy of 1q42. We don't recall posting that Morgellons is related to a duplication of 1q42. There may have been a temporary technical issue of which we were not aware. The Office of Rare Diseases Research provides the Rare Diseases and Related Terms list for information purposes only and it is not an official list. Rare diseases terms are based on questions received by the Office of Rare Diseases Research, the Genetic and Rare Diseases Information Center, or the National Human Genome Research Institute where the disease prevalence is fewer than 200,000 people in the United States. The Office of Rare Diseases Research does not designate diseases as being rare for orphan drug status, that is conducted by the Office of Orphan Products Development at the Food and Drug Administration (FDA). If you have additional questions, you can contact Ms. Henrietta Hyatt-Knorr of the Office of Rare Diseases Research. Henrietta Hyatt-Knorr Director, Policy and Program Planning and Analysis Office of Rare Diseases Research National Center for Advancing Translational Sciences, NCATS, Catalyzing Innovation National Institutes of Health, DHHS E-mail: Henrietta.Hyatt-Knorr@nih.gov Telephone: (301) 435-6045 Sincerely, Michelle Greenwood Information Specialist The Genetic and Rare Diseases Information Center was established by the National Human Genome Research Institute and the Office of Rare Diseases Research at the National Institutes of Health to provide responses to public information requests. Information Specialists are available Monday through Friday, 12:00 p.m. to 6:00 p.m. Eastern time (excluding Federal holidays), to respond to questions about genetic and rare diseases. PO Box 8126 Gaithersburg, MD 20898-8126 Toll-free: 1-888-205-2311 Telephone: 301-251-4925 TTY: 1-888-205-3223 Fax: 301-251-4911 E-mail: GARDinfo@nih.gov Web site: rarediseases.info.nih.gov/GARDImportant Disclaimer: The materials provided are for informational or educational purposes only and are not intended as a substitute for professional medical care, advice, diagnosis, or treatment. This material does not represent an endorsement of any specific tests or products by the National Human Genome Research Institute or the Office of Rare Diseases Research at the National Institutes of Health. We cannot guarantee the accuracy, completeness, timeliness, or usefulness of the opinions, advice, services, or other information. Moreover, we strongly recommend that you seek the advice of your health care provider with any questions regarding your medical care.
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bluesky
Junior Member
In memory of Dorothy
Posts: 63
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Post by bluesky on Sept 21, 2012 8:26:33 GMT -5
@dk-- if you know the original url of the webpage where 1q42 was posted, you can look it up on the wayback machine. Perhaps Greenwood would be able to explain this "temporary technical issue of which we were not aware". I will see if I can find the original page.
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bluesky
Junior Member
In memory of Dorothy
Posts: 63
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Post by bluesky on Sept 21, 2012 9:14:13 GMT -5
well, fascinating. archive.org/web/web.php does not have the original page archived, of which I have found two urls; not sure which is right: rarediseasesinfo.aspensys.com/asp/diseases/diseaseinfo.asp?ID=5666rarediseasesinfo.aspensys.com/asp/diseases/diseaseinfo.asp?ID=1945More discussion about this topic here: www.morgellons-disease-research.com/Morgellons-Message-Board/morgellons-theories-speculations/2014-cdc-morgellons-solved-chromosome-1-q42-hidden-webpage.html======================================= archive.org has this to say about their site: Archive-It allows institutions to build and preserve their own web archive of digital content, through a user friendly web application, without requiring any technical expertise or hosting facilities. Subscribers can harvest, catalog, and archive their collections, and then search and browse the collections when complete. Collections are hosted at the Internet Archive data center, and accessible to the public with full text search. Archive-It is designed to fit the needs of many types of organizations and individuals. The over 200 partners include: state archives, university libraries, federal institutions, state libraries, non government non profits, museums, historians, and independent researchers.
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sage
Full Member
Posts: 116
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Post by sage on Sept 23, 2012 1:50:33 GMT -5
Interesting ! I'm not surprised they covered it up by removal...As I recall, the very same data was presented on the NORD site early in 2006. I copied it & gave it to an MD in Women's Clinic at VA San Francisco. I was so busy searching on line for any suggestion of what this scurge could be, and I didn't give a lot of thought to this data's importance. It didn't ring a bell. The oddity NOW is that it was presentrd on two different sites! This sort of removes the "Oh, it was just a printed error". I still wonder why they were carrying on about Autism/Morgellons way back then (?) sage
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Post by The Voice on Dec 20, 2012 12:06:43 GMT -5
There are two groups which set themselves up as experts - who are far from it.
First we have people who are supposed to be real experts, like the CDC, who produce a lightweight superficial report claiming it is DP. If that isn't bad enough, such reports from "experts" are then taken as the final truth by the medical profession which then closes its door on us.
The other group are those without any medical, microbiology, or related scientific background, either making great proclamations or dolling out huge texts about treatments etc., they have lifted from scientific data and then adding their own wisdom (usually in great detail) about cleaning etc. They are people who think owning a standard microscope and a few test tubes and petri dishes amounts to the same as university research. They offer study at the level of a fourteen year old. I know of three such people, not from medicine or science at all but IT. Doctors go to these websites and then make judgements. Judgements that often go against us. There's one man selling home concocted creams made in his garage off the back of his "scientific" website. Then there are certain ladies who do a great job disguising the fact they are actually promoting certain labs and products. These are all people the media and medics turn to for information (apart from reliable sites like this - which are few and far between). Normally I would ignore such people but there are now so many they are a scourge.
There's one well known group that keeps banging on about chem trails and other conspiracy theories. Again, they don't have medical backgrounds - at all. Then of-course there are others in this category that have actually set up websites proclaiming we are all suffering from DP. I know of two like this - which have a great many "hits" - and again run by IT people. Maybe IT people have a fascination with medicine, who knows! Quite why they spend the time and energy to set up these sites is beyond me. Perhaps they get a kick out of hurting people.
For me the real heroes are those such as Stricker and Wymore who ARE experts. They are at the real cutting edge. There's the rub. What a pity there's no website direct from the "horse's mouth" e.g. from these two guys combined (maybe a few others too) telling us what they are doing and keeping us up to date. Instead we learn from odd snippets of information spread over the internet. The rest is down to the few websites like this and the many like those I have described. If we could get these few people together on one website it might then act as a focus for the medical profession and get them on our side.
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Post by Baraka Obam on Dec 20, 2012 19:04:49 GMT -5
Dear TheVoice, LOL, I hear you,
I am I fear a part of the second group, one of the untrained, ignorant, microscope, experts of what I see.
I can not actually relent to what process it is I see, but it is within my power to say what I see, I think I am well trained in that field.
You may already know I was born with with many ability's one was sight, another was curiosity, the third was intelligence.
These three usually work very well together, well, except in the case of fire crackers, well fire crackers and the new type of stove with the glowing coil that made heat, LOL, seeing that I never saw one before, but did know it was heat, but did not know it was per say fire, I touched the fire cracker to the glowing coil and to my surprised and without a backup plan I found myself standing in grandmas kitchen with a lit fire cracker.
Well you know the old saying lets just say My idea blew up in my face!
Guess what, I never again guessed that glowing red coils could start an instant fire, NOPE, the CRUX OF THE BISCUIT, I learn with experience and from experience.
As man has gone from developing simple tools to kill with to making weapons of mass destruction to kill himself with, he may not have advanced in his thinking quite correctly but he has learned.
We have been left to die, we have been slapped in the face and told the huge holes in our bodies are from our own making, LOL,
Even though I can not explain the process by which any of this takes place, after 40 years of watching my body and the population around me change, seeing disease rise in the population at large, and in children being born, like a loaf of bread with Chinese hair protein in it, I would say I have learned something about this stealth disease, WHATEVER it is.
I do not have plans to wake up tomorrow spurting the words of a microbiologist, but wish I knew what they all mean and could use them in practice of that field, but I am a realist, I do not know and will die not knowing.
I admit my short comings.
The thing I will not admit is that my observation and videos showing WHO KNOWS WHAT, are worthless.
WHY, because it seems to me, the main connection to all disease on the rise is connected with fibrous material, amaloids, and granulomas material, ALL OF THEM.
I may not be a scientist but this issue seems quite clear to anyone looking deeply into all the disease on the rise and looking for the connection to the fibers growing out of us, this is as plain as the nose on my face.
Lets return to the fact that god gave me three ability's, sight, curiosity and intelligence.
Well, that off my chest I want to speak directly at another member and show him that indeed I can learn, in the case of the FRENCH WORD misspelling, EN MASS, you helped me to realize whenever I came to a FRENCH sounding word I needed to make sure of its spelling or take note of its TRUE meaning, today I used the word CRUX, CRUX of a biscuit, In its use it could refer to the crumb of the biscuit, or the little crumbs all together making the larger more important whole biscuit, making all the little crumbs important to the assembly of the biscuit, or one crumb not being that important, I really do not know, BUT I will assume it as the fact of the matter, AND I DID SPELL CRUX correctly.
I am proud of this, I spelled CRUX correctly, maybe next week I will be able to speak fluent FRENCH, c'est la vie !!!
Homeworld thank you for the help your the best, you don't have to get me anything else for Christmas's, nope, you all ready gave!!
Then it actually comes down to this, what group would I rather belong to, The educated idiots, or the uneducated idiots, I must say the latter group sounds enticing to me as the first group has no excuse for their ignorance
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Post by threader on Dec 22, 2012 14:35:58 GMT -5
For me the real heroes are those such as Stricker and Wymore who ARE experts. They are at the real cutting edge. There's the rub. What a pity there's no website direct from the "horse's mouth" e.g. from these two guys combined (maybe a few others too) telling us what they are doing and keeping us up to date. Instead we learn from odd snippets of information spread over the internet. The rest is down to the few websites like this and the many like those I have described. If we could get these few people together on one website it might then act as a focus for the medical profession and get them on our side. This. And there exists a small minority of doctors who understand this has nothing to do with DOP. Why won't they post and contribute? Medical professionals should see Morgellons as a golden opportunity to make a profound change in the world as well as to make a name for themselves in the industry. How about a subforum here designated for contributions from experts only? Would it get posters?
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Ayla
Full Member
Posts: 117
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Post by Ayla on Dec 23, 2012 0:59:26 GMT -5
It seems to me that the NIH is placing the page up because there is so much inquiry into the disease. They have no answers. The intent is to do nothing except look official and reshuffle the papers on their desks.
The links mostly reinforce the DOP diagnosis/mental illness. There will never be any real help from the gov't because they are implicated in all this mess—from the FDA corruption and agenda of pushing GMO seeds onto the market, thus contaminating the worlds food supply, the increasing 'products' that biotech industry keep developing without regulation, the long-term experimentation and development of bioweapons...and the list goes on.
The gov't would have to be crazy to take a look at Morgellons, because this nasty pile of garbage under the rug would require a look back at their practices—and they will never let that happen.
We should all go home, take our meds. like good little citizens and stop bothering them with all this Morgellons nonsense.
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Post by The Voice on Dec 26, 2012 12:35:56 GMT -5
Re: Baraka Obam comment.
The thrust of my posting was not to criticise those who simply have microscopes or want to know more. Far from it. It's great that people take such a deep interest. There's a place for amateurs as well as those who have studied bacteriology and other scientific fields for years.
I do think the experts (and I don't mean the CDC!) should be putting forward a united front. That may well be possible in the future.
I won't enter a debate about use of language - especially the French one. Such comment would seem totally out of place, totally irrelevant and indeed arrogant on this website any way.
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Post by Baraka Obam on Dec 26, 2012 15:01:27 GMT -5
Thanks for the clarification about people that have to try to find their way with microscopes. These people have had no help, will a novice find the answer, could they, maybe, but unlikely.
my use of French, means what, ohh, the spelling of EN MASS, in mass and c'est la vie , say la vie actually french, English used phrases or words.
I gotta keep on my toes with spelling, now you know, nothing to do with vile utterance, there is no comment for this, but you can help make me better scholastically
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