Maybe a little perspective from the other side of the DOP misdiagnosis.
This is from the Charles E. Holman Foundation website. It is titled "Debunking DOP Diagnosis."
It is a very informative powerpoint made by a member of the medical community.
Here is an article relating to the same thing by Dr. Bransfield from the peer reviewed "Psychiatric News."
pn.psychiatryonline.org/cgi/content/full/42/11/24-bThe term Delusions of Parisitosis was removed from the CDC website due to it's antiquated connotations.
www.cdc.gov/ncidod/dpd/parasites/delusionalparasitosisIt was/is a catch all for physicians or dermatologists who want to give a QUICK diagnosis and get the patient out the door as quickly as possible and not cost them time/money. It is their way of explaining the inexplicable. Until it is researched and given the attention and money it deserves I'm afraid it will not be recognized by the AMA.
Only independent thinking physicians and dermatologists will recognize this disease until more accurate information is PUBLISHED IN PEER REVIEWED medical journals!!!
Here is evidence that this does indeed go on in the medical community. The below is an open forum discussion with the Washington Post where people posed questions to a Dermatologist who is a detractor of this condition:
www.washingtonpost.com/wp-dyn/content/discussion/2008/01/17/DI2008011701435.htmlHere is the specific question which applies to what I'm talking about:
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Grand Rapids, Mich: Why does the Dermatological community take such an antagonistic approach when interacting with patients??
Seems counterproductive.
Grace
Dr. Jeffrey Meffert: Hate to slam my bretheren but too many of colleagues have practices geared to see a patient every 5-10 minutes. It takes at least 30 minutes for the initial visit and 15-20 per follow up. They are antagonistic because, in some of their minds, morgellons patients cost them money. But that's not all of them and that's why sometimes you need to keep shopping
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The following is an undercover "New York Times" reporter investigating trying to get an appointment with several Dermatologists as a "Medical Case" and then as a "Cosmetic Case" and you can see the contrast.
www.nytimes.com/2007/08/29/health/29skin.htmlI did extensive research on this subject at one time and came to the conclusion that the term was initially coined by a misguided group of Europeaon Dermatologists who were trying to break into the field of Psychiatry where they had NO experience, knowledge or business venturing into and they caused great harm and damage to patients with their misguided research and THEORIES in the process.
I also have a term I would like to coin:
DPD = Delusions Of Psychiatric Dermatology
Unfortunately they had an audience and there is a lot published in peer review regarding this THEORY....although the condition is quite RARE!!!! If it indeed exists at all.
If your family is still unconvinced here is a bill which was later vetoed by President Bush which included language put forth and signed by ALL members of Congress. It has language trying to persuade the CDC to communicate to the medical community regarding the IMPORTANCE and EXISTANCE of Morgellon's Disease. To date this has NOT been done.
July 27, 2007
tinyurl.com/3dsuha Pages 76-77
Report of the Committee on Appropriations U.S. Senate Bill S1710
"The committee urges the CDC to work as quickly as possible to plan and begin this important research to increase the amount of information availalbe to practitioners and the public.
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Now you must ask yourself this question. If this disease were just a case of mere DOP would this disease have found it's way into a U.S. Congressional Bill to be signed before Congress??
There were/are so many individuals writing their Congress people that they had to take it seriously.
P.S. The CDC is directly responsible for perpetuating this false assumption by exhibiting it's wisy washy attitude towards this disease when asked point blank questions regarding its validity.
Case and point:
January 16, 2008 Transcript of CDC Press Release of "Morgellon's Disease" Kaiser research study.
www.cdc.gov/od/oc/media/transcripts/2008/t080116.htmWishy Washy CDC Representative's answers.
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MIRIAM FALCO: Hi, thanks for taking the questions. Dr. Pearson, I missed the top of this, so I may be asking you something you all ready explained, but number one, are you even on the press release, it says mystery disease. And from what was just described by Dr. Selby it still seems is this a disease or not? Does the CDC consider this to be a real disease?
And then number two, this is going to be done in Northern California, but are you also consulting researchers in other states who have been working on this and researching this for quite some time now?
DR. MICHELE PEARSON: First of all, what is very clearly to us is that there are a number of persons who are suffering the condition and the symptoms that we described. Part of the reason, in a large part we are conducting this investigation is because we don't know what it is and this is really an unexplained condition. So we are hoping to learn a lot about, not only the constellation of symptoms, but the impact of this condition on those who are affected as well as things that might be causing and contributing to it.
So, we are really at the beginning, I think, of a learning curve of what this condition is, and all of this potential manifestations. In terms of our work and the formative work that has been done around designing this investigation, we have assembled here within the agency, really a multi-disciplinary group of experts representing various disciplines, chronic disease, environmental health, infectious diseases pathology. And we have also consulted with external experts including pathologists and representatives from the American Academy of Dermatology.
We¡äve also spoken with many members of the stakeholder organizations and those who are effected with the condition.
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WILL DUNHAM: Hi, this is Will Dunham in the Reuters Washington Bureau. Dr. Pearson, I want to follow up on, I think, the first question that you were asked. Are you now not prepared to say that you believe that this is a real medical condition?
DR. MICHELE PEARSON: What I can tell you is real is the suffering that these patients are experiencing. I cannot characterize this as a syndrome, as disease. I can tell you it is an unexplained illness. That clearly, the suffering that these patients are experiencing is real. I¡äve actually, as part of my preparation for taking on this scientific lead have actually seen not only as a scientist, but as a physician, a patient up close and personal, and I thought that was very important for me to do, as part of my preparation for this. I had read about it. I had had heard about it. And I talked to numerous patients over the phone, but I¡äve actually had the opportunity to meet one of these patients first hand.
And what I can tell you is the suffering and the impact of this condition on their lives, whether you want to label it a disease or condition and I am not so concerned with the label but what they are experiencing in terms of the suffering is real. And, I think, it¡äs important and this is why the agency has decided to look into this in much more depth.
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DAVID TEMPLETON: Yes, thanks for taking the question. The lady who started the foundation who early named it comes from the Pittsburgh area. And by all accounts she went through quite a bit of an ordeal to even get this to this stage. And I am just wondering if you have this kind of fibrous situation with your skin, and these other symptoms, why would the medical community be so reluctant to say, I mean they were calling it psychosomatic and there was this psychiatric problem and all of that. When you see such symptoms, why has it been so long to recognize this as a potential problem that needed to be investigated?
DR. MICHELE PEARSON: I think the, I don't pretend to speak for all of the medical community, but as both a scientist and a physician, what I can say is, I think, that many of the providers who have seen these patients have been as challenged as the patients who are seeking care themselves. There is not textbook definition on this condition. There are many hypotheses about what might be causing and contributing it. And so it¡äs been a very frustrating journey, not only for the patients, but also for the providers who provide care to them.
And, I don't think it is unique to this condition. I think this is the case for any unexplained illness where there really
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The ULTIMATE responsibility as to how this HAS been MIShandled in the past, present and future lies squarely on the CDC's incompetent shoulders!!!!!!!!!!!!!! The longer they take sitting on their hands and continue their LACK of communication regarding this condition and the Kaiser study, the more permanent damage will ultimately be done to the people suffering from this disease.
By taking their time and doing and saying NOTHING, the CDC has single handedly succeeded in helping to perpetuate and perhaps solidified the MISCONCEPTIONS surrounding this condition in the medical and public realm. Silence is not Golden.
Faith