Saturday, May 06, 2006

A nice analysis

This article is mostly about Chronic Lyme - yet it describes a more general set of "Medically Unexplained Symdromes" (MUS) and discusses some of the implications of these problems. Well worth a reading in full.

http://www.ehponline.org/members/2002/suppl-4/607-611sigal/sigal-full.html

"
In the final analysis there is a struggle over
who defines a new and emerging disease:
patients, their chosen clinicians and advocacy
groups, or the biomedical establishment’s
physicians and scientists. It is clear that the
scientific community faces a formidable challenge.
Unexplained suffering and fear of the
unknown are far greater than fear of even the
worst, incurable disease and drive these
patients to extreme measures. Dealing with
the phenomenon of chronic Lyme disease, a
new constituent of the MUS syndromes complex,
requires an appreciation of its complex
psychopathogenesis. We need to appreciate
and study the aporology of MUS conditions—
to describe and heal the sense of being lost,
hopeless, and vulnerable"

4 Comments:

At 1:18 PM, Blogger Smileykins said...

This comment has been removed by a blog administrator.

 
At 5:35 PM, Blogger Tall Cotton said...

With the condition commonly referred to as Morgellons Disease some of the symptoms may not have been medically explained by the attending physicians, nevertheless most of them are explainable. The "Morgies" were looking for a morally acceptable expanation for most, if not all of their symptoms, and believe that they have found it with what they call "Morgellons Disease". The article states, "The energy, like a vapor, expands to entirely fill and take on the shape and dimensions of the container offered." Mary Leitao has provided the "Morgies" with a container to account for these symptoms by inventing what she calls Morgellons Disease. But in the absense of objective physical and laboratory findings Morgellons is not accepted as a disease by the scientific community.

The article states that "denial of the diagnosis of Lyme disease often evinces anger and indignation from the patient. The frustration of having the chosen/accepted explanation for their suffering removed is almost intolerable. Having Lyme disease holds a certain appeal for patients searching for answers for a number of reasons. Like multiple chemical sensitivity syndrome, there is an identifiable environmental cause to which the patient fell victim. They are not to blame for their illness. The illness was obtained during healthy and societally acceptable activities such as gardening, hiking, and picnicking." This is also true for the Morgies when they receive the diagnosis or Delusions Of Parasitosis (DOP). The "container" giving it illusory "substance" is "Morgellons Disease" These people are also "manifestly ill".

It appears that the "Morgie's" symptoms are also a "product of chronic psychological stress and resultant neurobiological changes." But in many cases the Morgie ignores another diagnoses provided by their physician simply because the diagnosis failed to account for "all" of the person's symptoms or because a particular medication failed to work for them. It's likely that these individuals have common physical illnesses exacerbated by immunocompromisation and emotional stress. The lack of a clear understanding of their own bodies and a lack of understanding of the perceived threat to self keeps these individuals clinging to "Morgellons Disease" as if it were their best friend. In fact, their illnesses have become such an obcession that they have placed them above friend and family, even above their relationships with their own minor children.

Like the people in the article, the "Morgies" were also in search of an explanation, and when they listen to each others horror stories on the Morgellons sufferer's message boards of their perceived denial and betrayal by physicians, government agencies, insurance companies, family and friends, they cling Morgellons as if it were the last lifesaver on the Titanic. They, too, have the outwardly directed hypervigilance, which often leads them to some foolishly extreme actions. These people are well known for burning slightly used couches, or hauling good furniture and mattresses to the curb. They have been known to do things like bathing in DMSO or WD-40, yet they claim that they don't have psychiatric problems. They are obcessed with their search of that "novel organism" that Mary Leitao has sent them to find, and seemingly anything, or anybody that stands in their way can be damned.

 
At 10:39 PM, Blogger Smileykins said...

Acceptance, and learning to live with medically unexplained syndromes is nothing new to many of us who have them. Bottom line...ya sink, or ya swim.

But now, this heinous creation of morgellons disease, let's look at it for what it really is.

To try being polite, it's people from all walks of life, with a common bond of "misunderstanding in their thought processes" which causes them to perceive things incorrectly. I was there myself, once upon a time, but it had nothing to do with morgellons disease. It had nothing to do with fibromyalgia, that I've lived with for 20 years, either, having had it diagnosed back when it was still called fibrositis. My rheumatologist told me it is the same thing that our older generation used to refer to as rheumatism. I ask you, did our elders believe in such things as government conspiracies causing it? Neither do I.

So once upon a time, there was a mother with a degree in biology whose little 2 year old complained that he felt like he had bugs on him. He developed a rash, so he itched. What does a child do when they itch? They scratch. What happens next? An oozing sore that gathers environmental fibers in it. Then what happened? We all should know the story by now.

He was diagnosed with eczema, but after his mommy was humiliated at the dermatologist, for having humored her, coming in with her own hand-held microscope and ultra-violet light, she set forward on a mission, stating, among other things, "I was going to find an answer, or I was going to have to take my life, that's all there was to it."

She'd said the medicine he prescribed for her son didn't help, but what did help him? We've never heard that, but he is much better now, as are most children by the time they are his age, when they have eczema.

Well, anyway, she claims to have begun this Morgellons Research Foundation all because of her son. Never any periodic updates on his condition, never a word of advice to her followers as to any effective treatment measures. Never any precautions to her followers to stop causing themselves further harm with the use of pesticides, caustic agents, worm pills for animals, blow torches, etc.

But hang on a cotton-pickin' minute. She comprised a "case definition" for morgellons disease.
Let's look at how that came about. People from all walks of life, that just can't reason out how they happen to have gotten fibers in their skin, specs, bugs, worms, and other oddities, registered on her site, and listed their other health complaints. Wow, she saw a pattern. Of course, there's no connection to any of it, but so what?

Keep your mind on the fact that mommy started this, "supposedly", due to her little boy. All right, does her little boy have that big list of symptoms that are associated with this made-up, several hundred year old, disease? Look at how far removed from a child's skin condition that "case definition" she created is.

This thing she caused to happen is so heinous. It prevents people from breaking free and seeking the truth of what their real health problems are. Maybe some of them would have eventually made it, but this is all too good sounding to them. They still go into their doctors, some of them, repeating the same old stories, and, naturally, they're discounted and dismissed. I'm certain that true, underlying, conditions that have caused the psychopatholgy to manifest to begin with, are not being detected a large part of the time.

But then, we also have another scenario that she has caused to take place. There are quite a great many believers who are diagnosed with serious conditions. Many of which are openly mentioned on morgie message boards, and for the life of me, I can not believe the insanity that I read there.

There are those who know absolutely nothing about what they have, and are not concerned, in the least, of learning anything about their conditions. Lupus erythematosus, just to cite one. Many people are treating with prescriptions for their real illnesses, but yet, they are totally ignorant of them, convinced that they have morgellons. They must obsessively keep looking on the internet for outlandish notions of what's behind the mystery. They must keep collecting their "specimens".

Nobody can understand that their "specimens" all look so similar to everyone else's because we're all homo sapiens, with the same dead skin cell components and environmental debris!!!

There are also those, among the believers, who refuse to accept legitimate diagnoses from their doctors. "Oh no, they are stupid, and they are wrong, and I'm not going to treat for that. This is morgellons, for which there is no know cure". Some have professed to have cancer, among many things. It's all due to morgellons, they say.

The Morgellons Research Foundation strings these poor, ill, misguided, souls along with their deceptive tactics, as has been pointed out on this blog. They've yet to be able to read between the lines of any of Dr. Wymore's letters.

They are convinced that a cause and a cure is imminent, and drawing closer as we speak. It's immaterial that there are many diseases known to man for which there are no known causes, and which have no known cures. Their morgellons is different! They're in a unique crowd that is going to show everyone one of these days, and it won't be long. They'll all soon be rich and famous, from not only the class action lawsuits against the government, but from the many individual medical malpractice suits, as well. They'll be all healthy again too, and they're gonna laugh in all our faces.

I'm sorry for mocking them. I'm just so irate, and I don't fault the poor sick people. I know, firsthand, that severe illness can affect the mind. They have no reason to even try grasping that, having been given the make-believe disease of morgellons handed to them on a silver platter. I despise the ill and injured being taken advantage of. The likes of this, none of us have ever witnessed.

A point I'd like to make about so many of the believers seeming to have lyme disease. How many of them realize that neurological symptoms are associated with its late stage (sometimes being referred to as "chronic")? Psychopathology abounds in many untreated illnesses, too.

They blame everything on morgellons, and morgellons causes everything. My, just think...once that cure is found for it, the entire world will be free from all disease.

"It all started with a young boy named Drew..."

 
At 7:24 AM, Blogger Tall Cotton said...

Excellent point!!!

 

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