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LymeBusters :: Morgellons :: Morgellons - General Discussion :: CDC Morgellons Hotline « Page 4 of 4 Jump to page   Go     Author Topic: CDC Morgellons Hotline (Read 2,685 times) freaky Ultimate Member member is offline doc, that's not candy in the match box. Quack..I mean sweet...ah, no, tweet taaaaweet! Joined: Jun 2005 Gender: Female Posts: 1,181 Location: Austin, TX Re: CDC Morgellons Hotline « Reply #60 on Dec 29, 2006, 2:50am » Maybe parents should make sure the CDC is aware of the crisis we have going on here with the youth of America. Are they aware that many parents have given this to their children at birth? or after birth? I think it's important to establish a fear factor up, & down the spines of the casual, unmoved CDC. Just a thought. Link to Post - Back to Top   Logged Life isn't about waiting for the storm to pass. It's about learning to dance in the rain, or rioting in the rain, if justice, truth, & the cure for Morgellons does not prevail. Remember the Boston Tea Party.We remember the reformation of the 16th century religgious movement that resulted in establishing the protestant churches. We're already dancing in the midsts of the morgellons reform movmt gezunked Full Member member is offline Joined: Nov 2006 Posts: 104 Re: CDC Morgellons Hotline « Reply #61 on Dec 29, 2006, 7:04pm » Hi people, I have a few questions about the CDC's involvement with Morgellons. I'm not in the US, nor a US citizen, so I haven't contacted them personally, but I keenly await some statement from the CDC that I can take to health officials in my own part of the world. There are a lot of questions and if anyone can help that would be great. When I use the term 'official' in the questions below I mean 'verifiable', more then likely something on letterhead or a publicly released statement. Can anyone direct me to an official CDC statement or URL which shows that there is an investigation being conducted or about to commence regarding this condition? Or even something official advertising their hotline? How are people supposed to know, or have trust in, a hotline if there is no official statement announcing it's been setup? Have any of the posters to this board officially been invited to participate in the proposed 2007 CDC study/investigation? If so, has any information, and I mean anything at all, been disclosed about the proposed investigation? Does anyone have an official date for commencement of this investigation? Can anyone post any verifiable official email response from the CDC? Has the CDC provided any respondents to the hotline/email address with any official written advice for their treating doctor? Since the CDC setup this hotline have any respondents had any contact from CDC representatives other then Mr Rutz? If so, did those people have a scientific or medical background? Has anyone done a Freedom of Information request regarding what the CDC is doing about Morgellons? e.g. emails trails to and from Mr Rutz Thanks guys, one more question only slightly about the CDC. What percentage of stress/distress would be removed from this condition if it was officially recognized as a non-psychiatric disorder? I'll start the bidding at...70% Link to Post - Back to Top   Logged Orion*** Ultimate Member member is offline Law of Logical Argument: Anything is possible if you don't know what you are talking about. Joined: Apr 2005 Gender: Male Posts: 1,756 Location: CO. Re: CDC Morgellons Hotline « Reply #62 on Dec 30, 2006, 3:08am » OK-this post definately deserves a thread of it's own---the questions asked are exceedingly valid and straight forward...this person is right on---too many questions and not enough answers....we deserve an answer to every one of the queries presented... any one care to step up to the plate? CDC, are you listening or just hanging out at the coffee shop? ***O*** Link to Post - Back to Top   Logged "No problem can stand the assault of sustained thinking."  Voltaire cyn Ultimate Member member is offline Joined: Oct 2006 Gender: Female Posts: 627 Location: california Re: CDC Morgellons Hotline « Reply #63 on Dec 31, 2006, 12:27am » What percentage of stress/distress would be removed from this condition if it was officially recognized as a non-psychiatric disorder? I'll start the bidding at...70% aWFULLY HIGH BID. i BELIEVE IT TO BE MORE LIKE 10% uNTIL A TREATMENT SPECIFIC TO MORGELLONS COMES ALONG,,, WHAT GOOD DOES IT DO ME IF SOME DOCTORS CHANGE THEIR MINDS? MY CONSTANT STRESS COMES FROM "AN AVERSION TO WORMS OR ANYTHING TOO SMOOTH" SINCE I WAS SIX YEARS OLD. NOT FROM SOME SCARED PHYSICIANS. WHAT COUNTRY ARE YOU IN? Link to Post - Back to Top   Logged gezunked Full Member member is offline Joined: Nov 2006 Posts: 104 Re: CDC Morgellons Hotline « Reply #64 on Dec 31, 2006, 7:24am » Quote: WHAT COUNTRY ARE YOU IN? Here's a hint Patients risk being caught in the net of web hype 15-Nov-2006 EDITORIAL by Brad McLean , Australian Doctor medical news editor . IN the BBC public relations satire Absolute Power there is a disturbing tale about the influence of the Internet. Caught on camera having assaulted his pregnant wife in an Ikea car park, a well-known comedian is forced to consult the spin doctors at the fictional firm Prentiss McCabe to ‘PR’ his way out of the press fallout. The Machiavellian svengalis at the firm hatch a cunning plan. They simply create a disease that features, among other things, violent outbursts but which rapidly responds to treatment. The PR firm launches a web site to provide evidence of the ‘new’ disease. The comedian confesses on national television to having the disease, assures the world he can make a full recovery, his wife stands by him and all is forgiven. Spin spun. The interesting part of the story is that when the disease web site is launched — before the comedian goes public — it is immediately inundated with visitors convinced they have the condition. Only the stuff of fantasy you might say? Well, not quite. In what you could call a case of life imitating art is Morgellons disease, which is sweeping the US. Mary Leitao, a southern Californian woman, brought Morgellons disease to public attention: her son Drew had it for years without doctors being able to explain his bizarre symptoms. Armed with a background in biology, Ms Leitao began her own research into her son’s condition — which included skin lesions, strange fibres growing out of the lesions and a crawling sensation on his body. Her research yielded an obscure 17th-century French medical text that described a cluster of symptoms so like her son’s it was uncanny. So Mary named the disease after the text’s author and launched a web site. Fast-forward five years and the Morgellons Foundation web site has thousands of registered patients and is inundated with inquiries from around the world each day — a Google search for the condition nets you more than 200,000 results — and thanks to the unprecedented power and reach of the net the legion of cases continues to grow. Trouble is there is absolutely no evidence or research to back up the disease as a real entity. The only published report appeared in the American Journal of Clinical Dermatology this year — an opinion piece from the founders of the Morgellons Foundation, including Ms Leitao. No conflict of interest was declared. But could the disease possibly be real? A visit to the web site gives you a feel for just how broad its symptoms are. They include fatigue, cognitive difficulties, behavioural effects and much more, including “brain fog”. Half of the cases also experience fibromyalgia, sleep disturbance, hair loss, neurological disorders and disintegration of their teeth. Few, as you can imagine, can continue to work because they cannot “function optimally”. And then there are the fibres. ‘Clinicians’ report seeing blue, green, red and black ones that fluoresce when viewed under ultraviolet light. However, according to media reports, critics analysing the samples generally identify plant material or lint (correlating with cardigan colour, one suspects). The site also explains that many patients have or will be diagnosed with ADHD, bipolar disorder or obsessive compulsive disorder, or have been labelled as having “delusional parasitosis”. In a New York Times article published in October, psychiatrist Dr Mary Seeman said the Internet had a powerful role to play in bolstering shared delusions and while the net was an excellent support tool we have yet to fully realise its power to perpetuate such thinking. “When a person has something bothering him these days the first thing he does is to go online,” she told the newspaper. “You can get reinforcement of your ideas very quickly there.” You have to feel sympathy for GPs left to deal with the fallout. The Morgellons story, and no doubt many others like it, speaks volumes about the need for medical information to be, at the very least, moderated or vetted in cyberspace. Net nanny programs exist to protect children from the dangers of pornography, but what measures are in place to protect vulnerable, even deluded individuals from health information? Thankfully, in the US, the Centers For Disease Control announced in June that it was putting together a 12-person panel, including pathologists, toxicologists, infectious diseases specialists, ethicists and mental health physicians, to develop a case definition for Morgellons should the disease be real.Its response is hotly awaited. Meanwhile, high-profile international media stories help keep the pot boiling and US television is lapping up the disease. Even medical drama ER made mention of the condition and the ‘fibres’. Let’s hope some sense prevails before we end up with Morgellons golf tournaments and a celebrity dancing competition for the Morgellons Foundation on prime time TV. Stay tuned. and here's my response: It was with considerable personal interest I read your article 'Patients risk being caught in the net of web hype' of 15/11/06. As one of the patients caught in a supposed web of net hype I found your opinion piece both cynical and lacking in objectivity. By setting up your story with the anecdote from the BBC satire you make clear your bias that 'Morgellons' is an hysterical phenomenon. Your comments regarding Ms Leito and her Morgellons Research Foundation are essentially accurate. However, the premise you draw from her activities that; 'there is absolutely no evidence or research to back up the disease as a real entity' does not in itself detract from the argument that such a condition exists. The challenge Ms Leito raises to the medical community is to objectively assess this condition. If this is a new condition as Ms Leito does not discount, it is hardly surprising that there exists no evidence or research to back up her assertions. Unfortunately, doctors too can suffer from fixed beliefs, particularly the one that 'doctor knows best'. The consequences of such an attitude can often be mis-diagnosis. The 'fibres' you so vigourously disparage are there for all to see. If one is prepared to use an instrument of 20x magnification or better. If GP's and dermatologists consider it too much trouble to look for these fibres it is unlikely they will find them. A salient point frequently raised within the Morgellons community is that if this is an infectious condition, as many believe, how many years will it take for the medical community to pick up on the fact, and what are the social consequences of such ineptitude. These are the real issues surrounding 'Morgellons'. I too eagerly await the results of the CDC trial. I trust a public retraction will be forthcoming should the result of that investigation warrant it. Sincerley, Me I'll let you know if I get a response. Make 2007 The International Year of Morgellons Awareness. Respond with vigour to all detractors. Be assertive not aggressive, calm not hysterical, logical not emotional. 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