If you were registered with the Morgellons Research Foundation about a month ago, then you would have gotten an email from Mary Leitao, in which was stated:

“Please know that hope truly is on the horizon. Please do not poison your body with pesticides and toxic chemicals while this mystery is unfolding. You must remain as healthy as possible.
[...]
If you would like a place to communicate with others who have this disease, you can go to this message board, which is dedicated to Lyme and Morgellons.
http://lymebusters.proboards39.com/index.cgi

Best wishes,

Mary M. Leitao, Executive Director
Douglas Buckner, Ph.D., Associate Director Morgellons Research Foundation”


On the MRF web site, back from February 2005 , until the recent re-design, there has also been a link to the Lymebusters discussion board:

http://web.archive.org/web/20050226092207/http://www.morgellons.org/

Why does the the MRF recommend Lymebusters (and ONLY Lymebusters) as the place to discuss Morgellons? I’m really not sure – since a look at Lymebusters does not lend Credibility to the Morgellons case. Here are some representative quotes from the past 48 hours or so:

From Glennb
I also have the stabbing ones, usually the stabbing is in the region of the lower legs and ankles. I can pretty much control this by spraying natural insect repellant on my lower legs everyday. If I forget I get the stabs. Also spraying the carpeting lightly with cedar oil spray helps. These things also float around in the air. I have a big plastic spray bottle that is one quarter water and three quarters Everclear Grain Alcohol that I added grapefruit seed extract to, also added lavender and teatree essential oils. This makes a great spray to clear the floaters out of the air, also like to spray my sheets with it before I get into bed at night.

From Magnolia
[...] I sat down in front of the computer, turned it on and within 20 minutes I was being swarmed by stuff! I looked at the computer screen and saw the “things” that most of us have. The cube that I sat in was very dusty. So I got out the H2O2 and wiped everything down, wiped my face off, and the swarming stopped.

From l46cheetah
If a Dr wants to be in denial that something physical is wrong then he has to do it on his own time and without me in the room. I have fired about 15 Dr.’s for the way they talked to me . I finally got sick of it and started trying things on my own. Then my nurse friend sent me to her Dr friend and he listens and he is at least trying. I have been to 32 Dr.’s in 3 years.

From Flowerchild
You should see a big difference if you zap tonight, as the moon is full, and the parasites are active and easier to kill. Hanna Kroeger recommended going after parasites 5 days before the full moon until at least 5 days after, as that’s when parasites come out of hiding in the body to reproduce

From Belikewater
This current lesion, about 1 inch square on my lower right arm I brought on myself, by pouring bleach on a picked area. There was an instantaneous, very scary reaction. The skin peeled back in a flash. My first panicked thought was ‘flesh eating disease’ and I grabbed my colloidal silver and splashed it on the area. The peeling instantly stopped. Then before my eyes a weird thing happened. Instantly all sorts of black fibers, specks and what appeared to be semi-formed arthropod forms appeared in the wound, spaced a bit apart from eachother

These are not unusual posts. They are quite typical, and they go without comment. There are far worse posts in there, but I limited it to the last 48 hours, and left out the suicidal rambles.

So why is Lymebusters the semi-official discussion board of the Morgellons Research Foundation? It really can’t help their image.

Lymebusters, as has been noted several times in comments here, is not a very healthy place. It’s a place where people build and reinforce errant belief structures, and a place where vulnerable people can easily be snared.

How can the MRF say “Please do not poison your body with pesticides and toxic chemicals while this mystery is unfolding” and then two paragraphs later direct them to Lymebusters, where people discuss assailing their skin with bleach, Everclear, tweezers and worse.

Medical Student Syndrome is an unusual affliction that affects people in medical training. The student reads about a novel disease, and finds they have some symptoms of this disease, and then imagine they have this disease.

Here’s a brief audio account from NPR, entitled: “The Challenge of Knowing Too Much, and Too Little”

http://www.npr.org/templates/story/story.php?storyId=5473416

People with inexplicable skin conditions, or itching, or people who simply worry a lot about their health, might resort to performing research on the Internet. It seems quite reasonable that they might find Morgellons, and since the range of symptoms is very broad, they would recognize some symptoms. They would then decide they have Morgellons.

Not that their problems are imagined, if people are sick, then they are sick, they have real problems, physical and/or mental. They are not sick with “Morgellons” but they might be suffering from a recently discovered form of MSS known as Cyberchondria.

One of the problems with discussing Morgellons is that the argument tends to be polarized by the issue of mental illness. Inevitably, the people who believe they have Morgellons (“Morgellons sufferers”) will accuse their doctors and other skeptics of explaining away their symptoms with “delusions or parasitosis”, or some other mental disorder, and ignoring their physical symptoms.

In reality things are no so black and white. Let me try to clarify my position here, since I feel it’s been misinterpreted.

It is very clear that people with Morgellons do not all have the same problem. In fact the cases discussed on boards such as Lymebusters are very varied.

Some Morgellons sufferers might have a single physical condition. Some might have more that one.

Some Morgellons sufferers might have a single mental condition. Some might have more that one.

Some Morgellons sufferers might have physical conditions, but not mental conditions.

Some Morgellons sufferers might have mental conditions, but not physical conditions.

Some Morgellons sufferers might have both physical and mental conditions.

Let me be very clear here, my UNCHANGED position on this topic is:

I do not think that all Morgellons sufferers are mentally ill.

And just to emphasise this a little more, I’ve changed the word “and” in line 3 of my header to “and/or”.

Lesions are real, and there a number of things that can cause them, including many known diseases, mostly physical, some mental.

Fibers are real, and there a number of things that can cause them. But as yet, no known disease causes fibers to emerge from lesions. No credible evidence suggests that fibers are emerging from the skin.

It has been reported several times that the CDC is forming a “task force” to investigate Morgellons, but I could find no mention of this on the CDC web site, nor did the news stories go into much detail. So I emailed the CDC to see if they could give me the official line on what they are currently doing. I got the following response (dated Thu, 1 June 2006 ):

“CDC is forming a working group to provide scientific overview for an objective review of issues surrounding what we are referring to as Morgellons Syndrome. This multidisciplinary group will develop a strategy by which we would expect to form a scientifically useful case definition, an important step toward answering other critical questions as to cause and possible treatment. We are basing this work on the evidence of human suffering without prior assumptions as to underlying cause. That important question can only be addressed by objective inquiry. / Dan Rutz Communications Specialist, Centers for Disease Control and Prevention(CDC)”

What does this mean? I’ll give you my interpretation.

They are “forming” a working group (meaning it’s not formed yet), to “review .. issues” (meaning looking at the available purported evidence, and judge its scientific rigour and its public health impacts.)

They are looking at something they are “referring to as Morgellons Syndrome“, (meaning they have not judged it a disease, not even a syndrome, they are just picking a name for something that might turn out to be one of them, but is initially just a phenomenon that the media wants investigated).

The “multidisciplinary” group (meaning it has at least two people, including someone for mental health) will “ develop a strategy by which we would expect to form a scientifically useful case definition” (meaning they will figure out if Morgellons has enough initial evidence to qualify as an actual syndrome or not, and if so, narrowly define what set of symptoms should indicate “Morgellons” for the purposes of future investigations).

Which would be “an important step toward answering other critical questions as to cause and possible treatment” (meaning, if it is a real disease, you have to have some statistically meaningful evidence of this before moving forward, unlike the current anecdotal or otherwise poor quality “evidence”).

We are basing this work on the evidence of human suffering without prior assumptions as to underlying cause” – (Meaning, people are suffering, so we should do something about it. Possibly they have a real disease, in which case we should track that down. Perhaps Morgellons Syndrome should be treated as a specific type of delusional disorder. Perhaps there are actually several different things going on here. Possibly patients sometimes have some other disease and Morgellons is an unhealthy distraction, in which case we should demonstrate that Morgellons is a fabrication to remove uncertainty in treatment. Either way, it’s just good scientific practice to not make any assumptions).

That important question can only be addressed by objective inquiry” (Meaning – unclear. Did he mean to write: “those important questions”, as referenced earlier? Or is he speaking of the “underlying cause”? Or a more general question? Regardless, I’m in agreement, as all important questions should be addressed by objective inquiry.)

The writer, Dan Rutz, is a man I have great respect for. He’s the former chief medical correspondent at CNN. He once wrote:

“I left CNN under the pressure of reporting stories “for competitive reasons” even when I knew the information was highly speculative, sensational, and little else. It was difficult to cave in to a management style that favors the sizzle more then the steak and fails to recognize both the positive value of responsible health journalism or the great harm flowing from the opposite.”

I feel Mr Rutz must be seeing much of what he describes in the current local TV coverage of Morgellons. It must be frustrating for him to not be able to at least urge restraint. But that’s not exactly his current job. His current job is to tell the media what the CDC is doing. He’s doing to very good job of that.

After typing the above, I get a Google alert of this story from sfgate.com: which contains this paragraph which make things clearer:

“Not a day passes when I don’t talk to somebody who claims to have this,” said CDC spokesman Dan Rutz. “In the absence of any objective review, people have jumped to conclusions and found each other on the Internet and formed their own belief structure. We really need to debunk this if there isn’t anything to it or identify if there is indeed a new, unrecognized disease that needs attention.”

The article itself is much better than others in the media so far . I think perhaps the tide is finally turning.

© 2012 Morgellons Watch Suffusion theme by Sayontan Sinha