Morgellons – A Mundane Approach: Changing Direction
Morgellons – A Mundane Approach is going to make a slight turn in direction, I know many of you are wondering what my [ideas] are for the campaign, let me just say I will not be organizing any marches or petition signings. While I know many of you want some bold drastic plan of attack, the opposite will probably be true, it will be but a whisper. However, it will be more effective in the long run, and that’s what we are in for, a long run. If others want to organize marches or petition signings I say more power to you, but that’s not my plan. This will give you some insight into my decision making process, or at least how I arrived at this decision.
There is no accusation I level that I am not also guilty of …
As you read this post and get angry at me, please return to the quote above, I sincerely mean it.
The Morgellons Community – Perception to the Outside World
As we all know most think this condition is a delusion of the mind. If that was our only obstacle we wouldn’t be in too bad a shape. However, all one has to do is Google “Morgellons” and they’ll find all the evidence they need to quickly write us all off. When I first started this blog my first post was trying to pinpoint the cause. However, I no longer even care to think about what the cause is, it’s a waste of time. I am not a scientist or a doctor, period. Our community is full of well intending backyard scientists and even some real scientists. I’m not going to mention names, but we have nanotechnology, chemtrails, parasitical worms, arthropods (collembola and alike), dental materials and mercury, alien origins, [Lymes] disease offshoot, GMO concoctions, and the list goes on and on … (and some of those were mine !!)
I believe in large part that to the outside world looking in they can find all the evidence they need within the first page of a Google search to put us all away. Right or wrong, those are the facts on the ground. The truth is, we need to clean house.
I was watching NCIS with my wife the other night when Gibbs was interrogating a lady and he picked up one of her blond hairs, held it up and said “I have people that can take this hair and analyze it, and tell me if your mother smoked”, then he paused a moment and said “menthol or regular”. Now he was using some hyperbole there but to this day we haven’t had an analysis of the fibers which astounds me.
I am not going to focus on the cause, my focus is going to be on education and reaching and protecting those that out there without any support. First and foremost I want to make sure they do not harm themselves by self medicating with anti-parasiticals and other dangerous techniques.
Making your Perceived Enemies your Friends
We as a community have been reacting incorrectly to the medical community, it is my belief that they want to help, but lack the tools, and it’s found in their own words. Please truly take the time to read these two quotes below, not just the highlighted parts, it’s important.
Here is a brand new article on pubmed, October 2011: http://www.ncbi.nlm.nih.gov/pubmed/21933231.
Delusional infestation (DI) is a psychiatric disorder characterized by a fixed, false belief that the patient is infested with extracorporeal agents. It is known by several names, including the more commonly used term ‘delusional parasitosis’. The psychiatric disease is responsible for the cutaneous pathology. About 90% of patients with DI seek help from dermatologists, and most reject psychiatric referral. Thus, effective management requires incorporation of psychiatric principles. We report three cases of DI with inanimate materials, and examine ‘Morgellons’ disease. We believe that patients with unusual presentations of DI are likely to be seen more commonly in the future. These patients appear to be a subgroup of DI, and may be even more difficult to treat than other patients with DI.
[Morgellons] syndrome. Evidence of a microorganism causing an unexplained dermopathy: http://www.eblue.org/article/S0190-9622(10)00742-5/fulltext
MD (Morgellons Disease) is not going to go away. Firmly ensconced in the electrons of the Internet, the frustrated patient with severe atopy, chronic contact dermatitis, acne excoriée, prurigo nodularis, chronic urticaria, or delusional parasitosis will eventually come across it in their search. They will be greeted by like-minded and similarly afflicted individuals who will encourage them to ignore the closed-minded physicians who have been unable to help them. Dermatologists need better tools to diagnose and treat the misery of these patients and need the willpower to spend the time they need to convince their patients that even though they do not have all the answers, they will listen and they will try their best. One cannot treat MD in a 7.5-minute visit; these patients require time and education. The psychiatrists cannot help most of them and MD patients are particularly sensitive to being referred for psychiatric medications. The primary care physicians have an incomplete knowledge of how things work in the skin and will not have any answers dermatology lacks itself. One does not have to agree with the “fiber disease” concept in order to provide compassionate care. If the patient wants to call their prurigo nodularis or delusional parasitosis “Morgellon’s [sic] disease,” that is fine as long as efforts are made to steer the patient away from wasteful and sometimes hazardous “cures.” The Centers for Disease Control and Prevention study on “unexplained dermopathy” has yet to report on its results, but when it does, clinicians should make themselves aware of how that might modify the debate.3
Do you need this volume on your shelf? No, and you probably will not need the second book that the author states is on the way. Unless you have an exceptionally large Morgellons Disease clinic population and an unusual interest in all things Morgellon’s [sic], your publication dollars are better spent elsewhere. All dermatologists, on the other hand, need to know something about MD and need to prepare themselves to deal with sufferers who have put “itching” and “fiber” into their Internet search engine and have finally discovered the diagnosis they have been looking for. Worthless scientifically, Dr Conroy’s Morgellon’s [sic\ Syndrome does still provide a detailed insight into how Morgellon’s [sic] “researchers” think and how they draw the conclusions they do.
So there you have it
From the above two articles I hope you can get a glimpse of where I want to go, and indeed I am changing the focus of this blog to that end. Doctors want to help, and while many of you might be bitter over the treatment you received you need to remember, the doctors you saw had little to no information and when we walked into their offices terribly distraught with samples we matched the profile they have been taught, what other conclusion would you have come to? We don’t have to agree that the condition is real to work together. My focus is not on getting people to believe Morgellons is real, frankly, I no longer care about that aspect.
Please take no action based on the above, don’t try to outguess what I am thinking. There are many, sadly, within our own community that like to derail all efforts but their own. The only threat to our success that concerns me will come from those within our own community who will try to derail everything I (hopefully we) are about to do. I can ensure you that this campaign will never make reference to this blog or myself or any other Morgellons site for that matter. My only goal is to help those convinced they have this condition and who are adrift at sea, terrified, and alone.
If we treat the medical community as our enemy we are failing those that need help, we don’t need to convince anyone it’s real, you know that. Besides, only true science can prove that. For those of you that have, through common sense measures, improved your health and greatly relieved many of your symptoms you know that the fear and horror are over, and life can be lived again. That’s all anybody needs in the end.
Finally, remember, as we try to slowly turn the tide of public opinion everything you post is being read by somebody, perhaps somebody considering joining in on the cause. Fear of being associated with the term Morgellons is enough to drive most away.