Post by clodya on Jul 4, 2009 15:59:09 GMT -5
Good day everyone!
I was surfing on the net the other day, and I fell on this site. The first article I read was: Morgellons--cranks in search of a disease. I do not know if you read that. This guy has an made well idea about what is the disease: DOP.
Morgellons---cranks in search of a disease
Category: Medicine
Posted on: March 23, 2008 3:20 PM, by PalMD
I'm trying to understand "morgellons syndrome". Based on Morgellons Research Foundation reports, there are a lot of people out there who believe they have this so-called disease. But what is it? I decided to dig deeper on the research end of things. I went to the MRF website, and to MedLine, looking for something, anything, to help me find out more about this problem. I must report that the science doesn't look good for the morgie boosters.
First, there has been little legitimate research on morgellons as such. The CDC is doing an epidemiologic study to determine what, if anything, may actually exist.
The medical consensus is that so-called morgellons is a variant of delusions of parasitosis. It may be, however no case definition exists, and no central registry exists. Each case is treated on its own (and probably should be).
Since morgellons resembles in every way but name delusions of parasitosis, it is on the morgellons advocates that the burden of proof falls. If they wish to invoke a new diagnosis, they must have a definition, a way of distinguishing morgellons from DOP, and a reasonable hypothesis to investigate. So far, none of these has happened.
The dermatology literature has treated this phenomenon is a very sensible way. It has been recommended that patients' feelings and sensations be validated, but that they be told the truth---that there is no evidence of infectious or otherwise primary dermatologic disease. It is sometimes recommended that patients be told that they have a problem with the sensory apparatus in their skin and nervous system, and that medications that act on the nervous system be used. This approach is quite rational, and atypical antipsychotic medications have been used successfully.
This is in marked contrast to the bizarre approach taken by the morgies. Their "research foundation" has preconceived notions of what is happening---they have formed a conclusion rather than a hypothesis. This is fatal to science.
Read on....
If anyone is to take them seriously, they must focus on science. Define your hypothesized illness. Set up a study protocol. Find patients using your case definition. Find appropriate controls. Have other, independent researches attempt to replicate your findings.
At least one academic has been trying, but failing. Randy Wymore, one of the MRF's scientists (OK, the only one) is trying to come up with some useful criteria to evaluate so-called morgellons syndrome. Unfortunately, not being a clinician, he's a bit out of his depth.
In defining a disease, the signs and symptoms you use to identify a case should be unique to that disease, and sufficiently specific to separate out a "normal" person from one with the disease. It is not necessary to know the etiology (cause), but it is necessary to be able to point at a person and say, "Based on these unique criteria, this person has the disease."
The terms used by Wymore are very un-medical, which doesn't bode well for someone trying to gain legitimacy for a controversial syndrome. For example, he uses the terms "physical" and "mental" to group symptoms, something that a clinician would never do ("mental" being a vague, non-clinical term).
Morgellons is a multi-symptom disease that is just now starting to be researched and understood. It has a number primary symptoms:
Physical
Sponanteously Erupting Skin lesions
Sensation of crawling, biting on and under the skin
Appearance of blue, black or red fibers and granules beneath and/or extruding from the skin
Fatigue
Mental
Short-term memory loss
Attention Deficit, Bipolar or Obsessive-Compulsive disorders
Impaired thought processing (brain fog)
Depression and feelings of isolation
There are several problems with this description. First, how do you define "spontaneously erupting"? Given that one of the questions is regarding delusions of parasitosis, and that people with DOP pick and don't realize it, there must be a high level of suspicion, and a dermatologist who can often tell an "outside job" from other rashes should probably evaluate all patients.
Sensations of "crawling" are very common in a variety of disorders.
Any "fibers" found, given that we all wear clothes, etc, are suspect. It is an extraordinary claim to say that fibers found in/on skin are endogenous and not transferred from everyday fabrics, so the level of proof needed is very high.
Fatigue is experienced by everyone. How do we quantify it?
"Mental" probably means psychological or psychiatric, but I'm not sure. Short-term memory loss is something measurable with available psychological tests, so that can be documented easily---common disorders that cause memory loss, such as dementia and depression must be ruled out before a new disorder is invoked.
ADHD, mood disorders, and OCD are common psychiatric diseases. To subsume them into the definition of another disease is a mistake. To call them co-morbid conditions would be interesting. The big problem is that most of the other symptoms described could actually be attributed to OCD, so how do we tease that out?
"Brain fog" is vague. In fact the symptoms and diseases listed under "mental" are a complete mess, in that they are intermixed inappropriately and don't help distinguish "mogellons" from anything else.
Given that this definition is basically useless, research will be difficult. Under the "research" tab on his website, no specific projects are listed. As far as I can tell, the "leading morgellons researcher" doesn't have any active research projects or publications (at least no relevant ones on PubMed).
"Morgellons" is a group of patients in search of a disease. So far, the disease does not exist, but the patients are suffering. Misleading them by labeling them with a syndrome with no known cause or treatments is shameful.
----------
my answer was...
Holly Molly... I didn't like the way you, dear 'doctor' are talking here. Im sory to tell you that but, hey, someone had too: as far as you believe you are.. you are NOT God baby! So just stop acting like you're the guy who wrote the bible + 1 page... please.
You do not have to be arrogant and disrespectful to whoever it is. You really think that our problem is DOP??? It's your right. Now put your opinion staff aside, stop taking your condescending tone and bring us proofs which support your statements.
I'm from Montreal and I speak french, but I'll do my best to be understood.
I dont want this discussion to turn in a fight.
I prefer to keep my energy for those who want to see, to learn, to discover, to help, rather that to try to open the spirit of those who look with blindly.
To begin, I'm going to quote a paragraph which you wrote higher:
'This is in marked contrast to the bizarre approach
taken by the morgies. Their "research foundation" has
preconceived notions of what is happening---they have
formed a conclusion rather than a hypothesis. This is
fatal to science'
You are right: nobody knows so nobody can make any conclusion, cause as you said, it's fatal to science.
So, can you tell what you think you are doing here? From my point of view, you seem to MAKE A CONCLUSION (dop, mental illness..) RATHER THAN A HYPOTHESIS. Do I need to inform you that your BIZARRE APPROACH is not for the good interest of your patients, as well as your 'medical association' PRECONCEIVED NOTIONS.
I don't think I have bugs or anything alive under my skin. The point is that it FEEL LIKE... When you wanna describe a feeling that you never feel before, it's just normal to make comparaison to something you know.
Follow the links to read letters from dr. Gergory V. Smith
www.cherokeechas.com/apptTips.htm
www.cherokeechas.com/gregs.htm
About DOP...
www.cherokeechas.com/derm-prn.htm
As you can read, to make a diagnostic of DOP, you have several tests to do on your patients. Well, I think the doctors who told me I was crazy must have a 6th sense, or they are more intelligent then Einstein, cause no test is needed: they only have to look at me from the other side of their desk, to tell me that im fine and it's all in my head!
GE-NI-US, my friend, that's what they are!
So let's talk about you, and your experience with Morgellons disease. Because according to your assertions- conclusions which, my lord, seems unshakable, I take for granted that you saw patients yourself who suffer from it, that you made your own tests and researches on the subject, and that you treated them from their delusion with anti-psycotic drugs. Is that right? So make us a favor and explain what you see with your own eyes, what you discovered with your own brain, wich medication you give to them, and how it help to re-connect to reality and forget about their delusion. Oh yeah, and important: Tell us what's happening to them when they stop to take your 'legal brain/feeling/emotion-freezer drug'
Internet, as doctors said, is not a reference at all. When I try to give them some pertinents doccuments printed on the net, they didn't even take a look. So it works in 2 sides. If the source of your information is internet, it's not good info and I didn't look either.
I do agree people seems crazy when thet talk about it. I seems crazy, too, sometimes. But it's not the madness which causes the disease, but the disease which causes the madness It's a f**king crazy mystery. A nightmare. People are scared, they need help, they beg for help and compassion. They still had no answers. No support. Nobody take time, nobody take a look, no ones try to work for/with us. And, as if it wasn't enough, they call us psyco, crazy, skizophrene or stress/anxious type of person. They look down at us,taking their superior face, (when they take time to look at us, in fact!) the little smile in corner of mouth. To see how the professional behavior, the public-spiritedness and the respect from the doctor disapear as soon as it is question of mental illnesses, I pity the poor men who are really afflicted by some mental disorder. As me, and as all of morgie's suffers, those people certainly fell like a piece of nuts to people like you.
Anyway, I just want you to help me. Honestly, I wish that all that I feel/see is only in my head, a big delusion. Give me A LOT magic pills so I can come back from my la-la-land and get my life back, my contagious smile, my energy, my face god d**n!
I can send you by mail some filament or fibers and you can look at them, and start a new post with all your master point that make you believe in what you believe.
You have nothing to lose here, I do. And i'm ready to send you all you need so you can do your own research : list of my symptoms, my feelings, my story and sample of what coming out of my skin ... You are so sure that what you think is the only THRUTH possible, don't keep it just for you! C'mon, all the world wait for answers: it's finally your chance to show the one and only truth: Morgellons doesn't exist, it's just some nutcases, living all around the world and didn't know each others, who share the exact same delusion. What's the big deal, hum? nothing's more normal then that! ok so I wait for you news muchacho!
And again...
please, place urself on the same step of me: we are both human, we both have hearts and a wonderfull ability to communicate with respect & intelligents/constructifs arguments!
Have a great week end!
----------
following by...
me again, sory
Wonder what was you opinion about Sida case history, as well as fibromyalgia... at first no one believing in it. Now, it's a 100% real disease. It was news discoverys, news knowledges, evolution in comprehension of human body. Every discovery, in whatever aspect in life, first start by new questions, or MYSTERY, if you prefer. Mystery = something we didn't ear about before, something we didn't think it can happen, something we don't know!
The world is still in evolution.
People have to evoluate, too. To think 'maybe' when you always tought 'no way'
People have to adjust their own reality and belief.
If you don't, you just stay retarded and ignorant ever after! I don't point anybody here, talking about the world in general... just in case =) peace & love!!!
His ''answer'' was this :
I dont want this discussion to turn in a fight.
Followed by:
you just stay retarded and ignorant ever after!
Sad. I guess some of us just need to "evoluate" a little more. Oh, and learn how to read for comprehension. Why is that such an unused skill?
---------------
Can u believe that???
I was surfing on the net the other day, and I fell on this site. The first article I read was: Morgellons--cranks in search of a disease. I do not know if you read that. This guy has an made well idea about what is the disease: DOP.
Morgellons---cranks in search of a disease
Category: Medicine
Posted on: March 23, 2008 3:20 PM, by PalMD
I'm trying to understand "morgellons syndrome". Based on Morgellons Research Foundation reports, there are a lot of people out there who believe they have this so-called disease. But what is it? I decided to dig deeper on the research end of things. I went to the MRF website, and to MedLine, looking for something, anything, to help me find out more about this problem. I must report that the science doesn't look good for the morgie boosters.
First, there has been little legitimate research on morgellons as such. The CDC is doing an epidemiologic study to determine what, if anything, may actually exist.
The medical consensus is that so-called morgellons is a variant of delusions of parasitosis. It may be, however no case definition exists, and no central registry exists. Each case is treated on its own (and probably should be).
Since morgellons resembles in every way but name delusions of parasitosis, it is on the morgellons advocates that the burden of proof falls. If they wish to invoke a new diagnosis, they must have a definition, a way of distinguishing morgellons from DOP, and a reasonable hypothesis to investigate. So far, none of these has happened.
The dermatology literature has treated this phenomenon is a very sensible way. It has been recommended that patients' feelings and sensations be validated, but that they be told the truth---that there is no evidence of infectious or otherwise primary dermatologic disease. It is sometimes recommended that patients be told that they have a problem with the sensory apparatus in their skin and nervous system, and that medications that act on the nervous system be used. This approach is quite rational, and atypical antipsychotic medications have been used successfully.
This is in marked contrast to the bizarre approach taken by the morgies. Their "research foundation" has preconceived notions of what is happening---they have formed a conclusion rather than a hypothesis. This is fatal to science.
Read on....
If anyone is to take them seriously, they must focus on science. Define your hypothesized illness. Set up a study protocol. Find patients using your case definition. Find appropriate controls. Have other, independent researches attempt to replicate your findings.
At least one academic has been trying, but failing. Randy Wymore, one of the MRF's scientists (OK, the only one) is trying to come up with some useful criteria to evaluate so-called morgellons syndrome. Unfortunately, not being a clinician, he's a bit out of his depth.
In defining a disease, the signs and symptoms you use to identify a case should be unique to that disease, and sufficiently specific to separate out a "normal" person from one with the disease. It is not necessary to know the etiology (cause), but it is necessary to be able to point at a person and say, "Based on these unique criteria, this person has the disease."
The terms used by Wymore are very un-medical, which doesn't bode well for someone trying to gain legitimacy for a controversial syndrome. For example, he uses the terms "physical" and "mental" to group symptoms, something that a clinician would never do ("mental" being a vague, non-clinical term).
Morgellons is a multi-symptom disease that is just now starting to be researched and understood. It has a number primary symptoms:
Physical
Sponanteously Erupting Skin lesions
Sensation of crawling, biting on and under the skin
Appearance of blue, black or red fibers and granules beneath and/or extruding from the skin
Fatigue
Mental
Short-term memory loss
Attention Deficit, Bipolar or Obsessive-Compulsive disorders
Impaired thought processing (brain fog)
Depression and feelings of isolation
There are several problems with this description. First, how do you define "spontaneously erupting"? Given that one of the questions is regarding delusions of parasitosis, and that people with DOP pick and don't realize it, there must be a high level of suspicion, and a dermatologist who can often tell an "outside job" from other rashes should probably evaluate all patients.
Sensations of "crawling" are very common in a variety of disorders.
Any "fibers" found, given that we all wear clothes, etc, are suspect. It is an extraordinary claim to say that fibers found in/on skin are endogenous and not transferred from everyday fabrics, so the level of proof needed is very high.
Fatigue is experienced by everyone. How do we quantify it?
"Mental" probably means psychological or psychiatric, but I'm not sure. Short-term memory loss is something measurable with available psychological tests, so that can be documented easily---common disorders that cause memory loss, such as dementia and depression must be ruled out before a new disorder is invoked.
ADHD, mood disorders, and OCD are common psychiatric diseases. To subsume them into the definition of another disease is a mistake. To call them co-morbid conditions would be interesting. The big problem is that most of the other symptoms described could actually be attributed to OCD, so how do we tease that out?
"Brain fog" is vague. In fact the symptoms and diseases listed under "mental" are a complete mess, in that they are intermixed inappropriately and don't help distinguish "mogellons" from anything else.
Given that this definition is basically useless, research will be difficult. Under the "research" tab on his website, no specific projects are listed. As far as I can tell, the "leading morgellons researcher" doesn't have any active research projects or publications (at least no relevant ones on PubMed).
"Morgellons" is a group of patients in search of a disease. So far, the disease does not exist, but the patients are suffering. Misleading them by labeling them with a syndrome with no known cause or treatments is shameful.
----------
my answer was...
Holly Molly... I didn't like the way you, dear 'doctor' are talking here. Im sory to tell you that but, hey, someone had too: as far as you believe you are.. you are NOT God baby! So just stop acting like you're the guy who wrote the bible + 1 page... please.
You do not have to be arrogant and disrespectful to whoever it is. You really think that our problem is DOP??? It's your right. Now put your opinion staff aside, stop taking your condescending tone and bring us proofs which support your statements.
I'm from Montreal and I speak french, but I'll do my best to be understood.
I dont want this discussion to turn in a fight.
I prefer to keep my energy for those who want to see, to learn, to discover, to help, rather that to try to open the spirit of those who look with blindly.
To begin, I'm going to quote a paragraph which you wrote higher:
'This is in marked contrast to the bizarre approach
taken by the morgies. Their "research foundation" has
preconceived notions of what is happening---they have
formed a conclusion rather than a hypothesis. This is
fatal to science'
You are right: nobody knows so nobody can make any conclusion, cause as you said, it's fatal to science.
So, can you tell what you think you are doing here? From my point of view, you seem to MAKE A CONCLUSION (dop, mental illness..) RATHER THAN A HYPOTHESIS. Do I need to inform you that your BIZARRE APPROACH is not for the good interest of your patients, as well as your 'medical association' PRECONCEIVED NOTIONS.
I don't think I have bugs or anything alive under my skin. The point is that it FEEL LIKE... When you wanna describe a feeling that you never feel before, it's just normal to make comparaison to something you know.
Follow the links to read letters from dr. Gergory V. Smith
www.cherokeechas.com/apptTips.htm
www.cherokeechas.com/gregs.htm
About DOP...
www.cherokeechas.com/derm-prn.htm
As you can read, to make a diagnostic of DOP, you have several tests to do on your patients. Well, I think the doctors who told me I was crazy must have a 6th sense, or they are more intelligent then Einstein, cause no test is needed: they only have to look at me from the other side of their desk, to tell me that im fine and it's all in my head!
GE-NI-US, my friend, that's what they are!
So let's talk about you, and your experience with Morgellons disease. Because according to your assertions- conclusions which, my lord, seems unshakable, I take for granted that you saw patients yourself who suffer from it, that you made your own tests and researches on the subject, and that you treated them from their delusion with anti-psycotic drugs. Is that right? So make us a favor and explain what you see with your own eyes, what you discovered with your own brain, wich medication you give to them, and how it help to re-connect to reality and forget about their delusion. Oh yeah, and important: Tell us what's happening to them when they stop to take your 'legal brain/feeling/emotion-freezer drug'
Internet, as doctors said, is not a reference at all. When I try to give them some pertinents doccuments printed on the net, they didn't even take a look. So it works in 2 sides. If the source of your information is internet, it's not good info and I didn't look either.
I do agree people seems crazy when thet talk about it. I seems crazy, too, sometimes. But it's not the madness which causes the disease, but the disease which causes the madness It's a f**king crazy mystery. A nightmare. People are scared, they need help, they beg for help and compassion. They still had no answers. No support. Nobody take time, nobody take a look, no ones try to work for/with us. And, as if it wasn't enough, they call us psyco, crazy, skizophrene or stress/anxious type of person. They look down at us,taking their superior face, (when they take time to look at us, in fact!) the little smile in corner of mouth. To see how the professional behavior, the public-spiritedness and the respect from the doctor disapear as soon as it is question of mental illnesses, I pity the poor men who are really afflicted by some mental disorder. As me, and as all of morgie's suffers, those people certainly fell like a piece of nuts to people like you.
Anyway, I just want you to help me. Honestly, I wish that all that I feel/see is only in my head, a big delusion. Give me A LOT magic pills so I can come back from my la-la-land and get my life back, my contagious smile, my energy, my face god d**n!
I can send you by mail some filament or fibers and you can look at them, and start a new post with all your master point that make you believe in what you believe.
You have nothing to lose here, I do. And i'm ready to send you all you need so you can do your own research : list of my symptoms, my feelings, my story and sample of what coming out of my skin ... You are so sure that what you think is the only THRUTH possible, don't keep it just for you! C'mon, all the world wait for answers: it's finally your chance to show the one and only truth: Morgellons doesn't exist, it's just some nutcases, living all around the world and didn't know each others, who share the exact same delusion. What's the big deal, hum? nothing's more normal then that! ok so I wait for you news muchacho!
And again...
please, place urself on the same step of me: we are both human, we both have hearts and a wonderfull ability to communicate with respect & intelligents/constructifs arguments!
Have a great week end!
----------
following by...
me again, sory
Wonder what was you opinion about Sida case history, as well as fibromyalgia... at first no one believing in it. Now, it's a 100% real disease. It was news discoverys, news knowledges, evolution in comprehension of human body. Every discovery, in whatever aspect in life, first start by new questions, or MYSTERY, if you prefer. Mystery = something we didn't ear about before, something we didn't think it can happen, something we don't know!
The world is still in evolution.
People have to evoluate, too. To think 'maybe' when you always tought 'no way'
People have to adjust their own reality and belief.
If you don't, you just stay retarded and ignorant ever after! I don't point anybody here, talking about the world in general... just in case =) peace & love!!!
His ''answer'' was this :
I dont want this discussion to turn in a fight.
Followed by:
you just stay retarded and ignorant ever after!
Sad. I guess some of us just need to "evoluate" a little more. Oh, and learn how to read for comprehension. Why is that such an unused skill?
---------------
Can u believe that???