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Post by toni on Nov 29, 2011 15:43:42 GMT -5
A few weeks ago when I'd gotten on the tangent again to write CDC and a few others, well...finally got a response back.
The last (Paragraph) sounded encouraging, but maybe that's just me and my wishful thinking.
I don't know, but...wanted to share it.
----- Original Message -----
From: Ryan, Tamara S. (Tammi) (CDC/OD/OCS)
To: ///////////////////
Cc: Joshi, Namita (CDC/CGH/DPDM) ; Brown, Sandra E. (CDC/CGH/OD)
Sent: Tuesday, November 29, 2011 10:53 AM Subject: Morgellons Study Concerns
((( also the people in the Cc of the email sent to me I see also received my letter and this person's reply to me))))
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Dear Ms. /////////,
Thank you for your inquiry regarding the CDC study of an unexplained dermopathy that some refer to as Morgellons.
The Centers for Disease Control and Prevention (CDC) has received numerous inquiries about this condition. However, its cause is unknown, and the medical community has insufficient information to determine whether persons who identify themselves as having this condition have a common cause for their symptoms or share common risk factors.
As noted in your letter, CDC has undertaken an investigation of this condition, conducted in collaboration with Kaiser Permanente's Northern California Division of Research and the Armed Forces Institute of Pathology. The primary goals of the investigation are to help us learn more about who may be affected with this condition and the symptoms they experience and to generate hypotheses about factors that may contribute to it.
CDC has completed the data analysis and draft report, which has been submitted for publication in a peer-reviewed scientific journal. Publication in a peer review journal is an important step, as it 1) allows additional experts to review the study methods and results to ensure its quality and appropriateness, and 2) contributes to the accepted scientific body of evidence that informs our understanding of this condition. Publishing the study results in a peer reviewed scientific journal provides the best forum for creditable scientific information. However, the peer review process restricts us from releasing the report prior to its publication.
I want to assure you that CDC is working to make this report available for public dissemination as quickly as is possible without compromising the scientific integrity of the study. We will provide an update to the individuals and organizations who have expressed an interest in the report, as soon as the report is published, and we will post any updated information to our website (http://www.cdc.gov/unexplaineddermopathy).
Thank you again for your letter. I hope this information has been helpful.
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Post by ppy18 on Dec 1, 2011 21:32:07 GMT -5
you're the best toni. thanks for all you do. lets hope the cdc gives us something solid to respond to if not build upon in the very near future.
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Post by ginna898 on Dec 2, 2011 14:29:51 GMT -5
Thank you toni
and Thank you ppy18.
I'm afraid that CDC will stall as long as possible.
When watching tv the other day ----- AIDS awareness (and the CDC) were all over the news.
----still keeping AIDS alive with the big news stations and locals news as if it just happened yesterday being discovered as a NEW infectious disease.
Yes Aids is important ---- But we 'morgellons people' sure have been waiting a very long time for 'real' recognition as they do for AIDS ----30 years or more AFTER it first broke out.
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Post by ginna898 on Dec 3, 2011 20:48:38 GMT -5
Been thinking on this looking for a hint of hope and don't see it.... I do hope it is only my current thinking and that there really is a ray of hope for all of us.
Dear Ms. /////////,
Thank you for your inquiry regarding the CDC study of an unexplained dermopathy that some refer to as Morgellons.
The Centers for Disease Control and Prevention (CDC) has received numerous inquiries about this condition. However, its cause is unknown, Nothing new, all this above information is on their webpage.
and the medical community has insufficient information to determine whether persons who identify themselves as having this condition have a common cause for their symptoms or share common risk factors. Now, comparing to AIDS, the Physicians identified the condition and not the AIDS 'persons'.
As noted in your letter, CDC has undertaken an investigation of this condition, conducted in collaboration with Kaiser Permanente's Northern California Division of Research and the Armed Forces Institute of Pathology. Repeating what you wrote .... nothing new here.
The primary goals of the investigation are to help us learn more about who may be affected (as in which kind of people with a common mental problem? maybe?) with this condition and the symptoms they experience (symptoms THEY experience and not what symptoms the investigators may SEE for THEMSELVES to understand how very real it is) and to generate hypotheses about factors that may contribute to it. (a time consuming process and no mention of possible contagion factor being involved)
CDC has completed the data analysis and draft report, which has been submitted for publication in a peer-reviewed scientific journal. Publication in a peer review journal is an important step, as it 1) allows additional experts to review the study methods and results to ensure its quality and appropriateness, and 2) contributes to the accepted scientific body of evidence that informs our understanding of this condition. Publishing the study results in a peer reviewed scientific journal provides the best forum for creditable scientific information. However, the peer review process restricts us from releasing the report prior to its publication. Peer review process guidelines must have changed since the AIDS epidemic.
AIDS was on the news when people showed up in the ER with symptoms, and on the news during the research going on at several places globally, and CDC made an announcement on public TV news when the virus was discovered BEFORE any peer review paper was ever done.
I want to assure you that CDC is working to make this report available for public dissemination as quickly as is possible without compromising the scientific integrity of the study. If it is an Indisputable SCIENTIFIC study, then there should not be fear of anyone (such as 'us' morgies) compromising the integrity which WE WILL if mental conditions are the cause as they did with CFS, FIBRO in the beginning. YES --- I feel it's a stall. I am not trying to rain on anyone's parade. I feel we are on our own just as we have been from the beginning.
We will provide an update to the individuals and organizations who have expressed an interest in the report, as soon as the report is published, and we will post any updated information to our website.(http://www.cdc.gov/unexplaineddermopathy). ---- no mention of a News Press Release? Is this what they do will all diseases? ONLY provide updates to individuals and organizations who have expressed an interest in a new disease? How terribly wrong this has been from the get go!
Thank you again for your letter. I hope this information has been helpful.
We should be thanked for giving up quality years of our life! And what about the death and suicides we see happening with many. oh yeah,...... suicide=mental instability
FROM CDC WEBSITE:
How do I find a doctor?
CDC is a public health institution that is a part of the federal government. CDC does not provide healthcare or maintain a referral list of providers. CDC suggests that you contact your primary care provider. If you do not have a healthcare provider, you may be able to identify an appropriate doctor in your area by contacting your insurance company or by using online physician locators
I see it's ok to find a physician online but if you discover others with your morgellons symptoms online,----- then it becomes internet hysteria or an internet disease.
Thank you CDC for all your assistance this last decade or longer! (NOT)
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Post by itchin4answers on Dec 3, 2011 22:07:01 GMT -5
Thank you toni for writing to CDC & sharing their reply.
I don't feel in a position (yet again) to pass judgement on the US Government, however they have us over a barrel so here goes...
I felt that their reply letter was the usual lip service that one would expect, meaning "a typical government letter". They give no explanation for their study taking nearly 4 years AND after almost 4 years they still do not have a clue what this is...hmmmm...doesn't ring true.
Being here in Australia I & others are feeling rather desperate to say the least. The Australian Government are giving the usual lip service also with their repetitive replies ie. "As you may be aware, the US Centre for Disease Control (CDC) and Prevention is currently investigating this unexplained and debilitating condition and has recently completed a data analysis. A final report has been submitted for publication in a peer-reviewed scientific journal. The Office of Health Protection will consider the findings of this report when available."
We are in a no win situation. The AU Government will NOT notify the medical profession of a newly emerging disease - which to my mind would make sense if one was wanting to conduct an epidemiology study. They won't even recognize we have LYME in AU!!!
The medical community here & the government are each on their own personal agenda. Survival of the fittest, they don't give a damn!!
Julia Gillard PM, gee whiz lady a pay raise? - I hope you choke on it!!!
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Post by toni on Dec 4, 2011 17:31:15 GMT -5
Trust me girls, (just as I'd written above in the first post) it's only the last paragraph in that letter that gave some hope, as I'd said before.
Where she said (I assure you) ....etc.
As for trusting them as to "believe them"....well, I do. I believe that they are working on this - because of one single reason.
If this "infection" or whatever we call it, is "transmittable" or "contractable"....
as it sure seems to be, then they'll be all over it. It's just not fast enough, I couldn't agree more. They have family/kids/parents too.
What I look at too is "the numbers of people growing daily" complaining of the same things we are too.
If this isn't a sign of something "going around" and possibly contractable, since pets have it too, then I don't know what is.
That's why I'm hanging onto the comment that they are working on it.
Keep the faith and believe positively.
And (really) trust this too, I agree, it seems like we've been hung out to dry because "soon isn't soon" enough. I am living a totally secluded life (like I'm non existent) because of this Morgs garbage - so I want answers yesterday too.
I also believe "as I have from the start"....that until the general public has the FEAR of catching this too, they as in CDC will drag their butts because if we're the only pressure they've got on their backs, well....(imho) they need lots more people all over them to force them out so we ALL know what's being done, and where we all stand.
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Post by ginna898 on Dec 5, 2011 13:14:43 GMT -5
toni, -----You certainly are right that the numbers are growing of people with this and even MORE right that we need to keep the FAITH and keep POSITIVE. thank you for the reminder.
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Post by 22122agin on Dec 5, 2011 17:20:39 GMT -5
Thank you, toni, for sharing that letter. I do feel there were positive points to it and it is good to remain hopeful inspite of what might be negative signs in the past. Lets hope for the best and then our immune system works better too. We are all different in how we approach things and there are no wrong approaches in how we might see this letter. We have all been through our individual hell. I am drafting a letter to my derm doc whose approach is very traditional. Then he won't have to send us away and at least give us some kind of remedy even if he does not believe in it. Doctors, at least mine, are so concerned about the AMA and it really does stand over them like a towering inferno and it gets worse the longer a doctor is in practice, it seems. Best to you all. 22122
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Post by itchin4answers on Dec 5, 2011 17:47:14 GMT -5
Thanks toni, you are right, need to keep positive.
Sorry for sounding negative. I have been ever so worried about my Tony. Last weekend had to take him to a different GP as ours was closed. Tony has mycoplasma pneumonia, had two courses of antibiotics & still not right. He took the results back to this other doctor who then gave him the bums rush & said to see his own doctor.
Tony tried to call our GP this morning as he is having trouble breathing and the cough is persistent. Once again our GP is on leave, not sure if he is sick - anyway he is not back until 19th December. This guy needs to make his mind up, care for his patients or resign!!
I now think me & William have caught a tad of what Tony has. We just keep on passing it around in this household. Thankfully William doesn't have spots or sores, though Tony & I do. I feel as though we are assimilating together, it is so horrible.
As awful as it sounds, more people in Australia need to get this. A little hysteria may just be what we need. Not trying to sound negative, just saying how it is. It's as though we are in the dark ages here in Australia & no one seems to be getting quality health care unless you are paying a LOT of money.
Sorry for my ramble, but you know how it is, don't like to see this happening to my family.
CDC have done a heck of a lot more than our government. I am so disgusted with Australia.
Thanks again for your words of encouragement.
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Post by toni on Dec 6, 2011 10:15:00 GMT -5
toni, -----You certainly are right that the numbers are growing of people with this and even MORE right that we need to keep the FAITH and keep POSITIVE. thank you for the reminder. Sure And thank you too. It's really for us (to keep the positivity going), because that keeps us stronger (the immune works better), even though I sure know it's difficult knowing how we've been waiting and waiting - and suffering every second of every day. And you know what else? They don't get to ignore this, and we're not going to let them - because we're not going anywhere. We fight and keep fighting. Please keep writing those letters to everyone you can, newspapers, tv stations, elected officials etc. Everytime anyone gets fed up to the point they can't stand it, write it out, and send it off to someone. Not only does it help push the fact we're still hanging suffering, but the fact that it's still not addressed by any means to our satisfaction or resolved, because even though it seems we're not heard, we really are, and we all matter, and we really do make a difference - whether we see the results instantly or not, we do make things happen, and we are making a difference. Thank you.
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Post by toni on Dec 6, 2011 10:33:07 GMT -5
Thank you, toni, for sharing that letter. I do feel there were positive points to it and it is good to remain hopeful inspite of what might be negative signs in the past. Lets hope for the best and then our immune system works better too. We are all different in how we approach things and there are no wrong approaches in how we might see this letter. We have all been through our individual hell. I am drafting a letter to my derm doc whose approach is very traditional. Then he won't have to send us away and at least give us some kind of remedy even if he does not believe in it. Doctors, at least mine, are so concerned about the AMA and it really does stand over them like a towering inferno and it gets worse the longer a doctor is in practice, it seems. Best to you all. 22122 That's great 22122, about sending a letter to your doctor too It all helps. We're all individual puzzle pieces that by continuing and committing to never giving up, we win. And yes, these "non believing doctors" are governed in a sense by the perimeters of their practice, and something new like this, their hands are tied, but there's no denying CDC is studying this (it's on their site) and their recorded message that can be accessed by any doctor too. And if this were something simple, it still wouldn't be under study since 08. I wonder what some of those arrogant doctors are saying now, because (had Morgellons been something of DOP) it wouldn't be taking 4 years now for CDC to determine that. That too is to our (acknowledgement of Morgellons existence and advantage)...whether a doctor or anyone has heard of it or not.
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Post by toni on Dec 6, 2011 10:49:03 GMT -5
Thanks toni, you are right, need to keep positive. Sorry for sounding negative. I have been ever so worried about my Tony. Last weekend had to take him to a different GP as ours was closed. Tony has mycoplasma pneumonia, had two courses of antibiotics & still not right. He took the results back to this other doctor who then gave him the bums rush & said to see his own doctor. Tony tried to call our GP this morning as he is having trouble breathing and the cough is persistent. Once again our GP is on leave, not sure if he is sick - anyway he is not back until 19th December. This guy needs to make his mind up, care for his patients or resign!! I now think me & William have caught a tad of what Tony has. We just keep on passing it around in this household. Thankfully William doesn't have spots or sores, though Tony & I do. I feel as though we are assimilating together, it is so horrible. As awful as it sounds, more people in Australia need to get this. A little hysteria may just be what we need. Not trying to sound negative, just saying how it is. It's as though we are in the dark ages here in Australia & no one seems to be getting quality health care unless you are paying a LOT of money. Sorry for my ramble, but you know how it is, don't like to see this happening to my family. CDC have done a heck of a lot more than our government. I am so disgusted with Australia. Thanks again for your words of encouragement. Oh Itchin, I'm so sorry you're so worried about your sweetheart Tony. He sounds very ill right now, and I sure hope that turns around to where he's back to feeling better, and you too. My daughter and her husband had "what sounds" like what you both have. They seemed to have the flu, and a cough that wouldn't stop, along with being super congested. My Mr Toni had something like that too a few weeks ago, and me very slightly, and we took zinc (Zicam). I don't know of course if that would help you and your family, but we sucked on those yummy (I like them) called Zicam (from the grocery store) - they've got Goldenseal and Echinacea - immune boosters, and the zinc in them. I believe they helped greatly actually. I sure understand what you mean about hoping others catch this, (we all can relate) I'd bet on that. It's like being on the moon, and no one knows what it's like - when being alone with something like this to where others don't understand it. If everyone had Morgellons, then they'd know without a doubt what we're trying to tell them, in how we need help, and now. I understand. Take care, and I sure hope your family feels better real soon.
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Post by Lynn on Dec 6, 2011 11:37:53 GMT -5
Hi Itchen Sorry to hear he is still ill and has gone through two antibiotics and still fighting this. Reminds me of my hubby a little, but he had Bronchitis that would not go away and he lived on different antibiotics for a year. He got so scared he asked me for help with all the herbs and such. I made him take two weeks of Echinacea by dr. Shultz because Echinacea (children's tincture) can only be taken for two weeks. It tweaks the liver into revving up and you can only tax the liver like that for so long before you kill it. Then also made him take Dr. Shultz Super Tonic for a month and while all this made him take 1000 mg. of Ester-C with each meal. Vitamin C (non-Acidic) creates a better immune system without revving up the liver. I made the hubby take the Ester-C for three months and he was hap hazard about that and still got well. Every time he had any sign of anything coming on I would put him right back on the whole ball of wax. Eventually a year later he could go a couple years without the Bronchitis and then it would only take a couple of weeks on the stuff to get him back to having no inklings again. www.herbdoc.com His stuff is very strong and pricy, but it was a have to back then. Also his stuff is very organic and safer then the store bought stuff which is probably got toxic fillers, radiated, washed out, chemically altered. It really grates on me how hard it is to find product that is safe and not cost the arm and leg. Hope he gets well soon.
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Post by itchin4answers on Dec 6, 2011 17:47:08 GMT -5
Dear toni & Lynn, Thank you both for your get well wishes & info. on supplements. Tony said this morning he feels he is turning the corner, which is great news. No doubt, his immune system is working over time as Tony has liver disease. We both haven't smoked a tailored cigarette in over 2 weeks. We have been rolling our own from the pouch tobacco. Cost & our health made us make this move. Tony not smoking much at all, as this makes him cough. Wish we could give the darn things away altogether. I'm ok & don't have a cough nor cold. It's weird, I sound a little husky & my eyes are puffy so something going on. Very tired, we could sleep our lives away - wouldn't that be great! Yes, the supplements cost an absolute arm & leg & sometimes I wonder if they do anything at all. I must mention the Vaseline, has worked wonders on my skin, spots are gone. Tony's are slowly healing as he forgets to do regimes, you know how men can be!!! Anyway, thanks again for your help. Here's to better days ahead, & yes I do feel like I live on the moon at times!!..lol Love to all
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Post by 22122agin on Dec 10, 2011 23:22:09 GMT -5
And if this were something simple, it still wouldn't be under study since 08. [/quote]
Maybe doctors only become more open to another way to the degree they come up close with a family member or themselves being afflicted. Still, would not wish this on anyone. When one considers that one essentially in most cases, at least in the beginning, drops out like a blip from how they used to be. I tried to write the doctor this week but the words don't come yet but I think they will one day. Sometimes, brilliant minds are not necessarily open minds. Some of the doctors had a lot of brains and intellect to get through medical school. If I write it at the wrong time, it would be worse than not writing it at all in this case added to that to be saying the things that will be truly useful. After reading all of this, I do think that it does effect the brain maybe even becomes it somehow. I am not willing to do a PET scan at this point, though. 22122
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