Why does the MRF recommend Lymebusters?

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.

June 11, 2006 by Lymebusters MRF

Medical Student Syndrome

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.

June 9, 2006 by Science

Physical and/or Mental

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.

June 7, 2006 by Delusions

What is the CDC doing about Morgellons?

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.

June 1, 2006 by Media

India

Here’s a fascinating article from India:

A study of skin disorders in patients with primary psychiatric conditions.

Which neatly goes over a “mixed variety of physical and mental illnesses”.

Only 2% were diagnosed with DOP, and less than 5% of the skin disorders were psychogenic.

Now, I don’t think this group is at all representative of the people who claim to have Morgellons, since it’s a sample of people who have a primary psychiatric condition. But the varied nature of the study group is probably representative of the mixed variety of Morgellons sufferers.

Here’s a nice quote:

“The skin occupies a powerful position as an organ of communication and plays an important role in socialization throughout life. The interface between dermatology and psychiatry is complex and of clinical importance”

May 30, 2006 by Delusions Science

Morgellons Fact Check

The following Q&A is aimed at addressing some of the misconceptions regarding Morgellons that have been propagated in various media articles.

(Note: This will be a work in progress – please email me suggestions and corrections at Morgellonswatch@gmail.com)

Q) What is Morgellons Disease?
A) Morgellons is an proposed disease, unrecognized by doctors, promoted and self-diagnosed via the internet. People claiming to have Morgellons have widely differing symptoms, the most common of which is they feel they have been misdiagnosed by their doctors. Supporters claim the most notable feature is fibers emerging from the skin, yet everyone has fibers on their skin.

Q) Is Morgellons a real disease?
A) Not by conventional medical standards. The offered case definition is very long, and very vague. It fits a very large number of existing diseases, and simply suggest co-morbidity of a variety of conditions such as eczema, chronic fatigue and anxiety disorders. The “evidence” for Morgellons is entirely anecdotal.

Q) What is the History of Morgellons?
A) Morgellons was first proposed in 2002 by Mary Leitao, to explain her 3-year old son’s eczema. Leitao looked at her son’s skin under a microscope and found fibers on it, and decided she had discovered a new disease characterized by fibers emerging from lesions, and started a foundation. Her son’s eczema cleared up naturally. His symptoms did not include those of the more recent claims of Morgellons. The list of symptoms has rapidly expanded as more people registered. Leitao encouraged people to seek out fibers in their lesions. The idea of Morgellons was spread over the internet.

Q) Are the most cases in California, Texas and Florida?
A) Yes, because that’s where the most people are, those states have the highest populations. Morgellons is a self-diagnosed disease. People “register” over the internet by filling out a simple form on Morgellons.org.

Q) Who is Ginger Savely?
A) Ginger Savely is a nurse practitioner who was unable to find a doctor in Texas to supervise her practice, due to her unorthodox and possibly dangerous treatment of Lyme disease patients. She gives similar treatments to self-diagnosed Morgellons suffers. She is a member of the Morgellons Research Foundation, and co-authored an article on it with Leitao. She is active in the Media campaign, and is seeking new patients. She makes a living from selling her unorthodox treatments.

Q) Have researchers determined the fibers are not environmental?
A) No. Randy Wymore is the director of Research at Leitao’s MRF. He works on a volunteer basis using the facilities of OSU. He has been examining fibers sent (often anonymously) to him. Many fibers he would discard as environmental, but there were a few he could not identify. Not being able to identify a fiber is not the same as proving it is not environmental. Fibers go unidentified all the time in forensic cases. To prove it was not environmental, you would need to prove it was generated inside the body. This has not been done.

Q) Do most doctors dismiss Morgellons Sufferers as having Delusions of Parasitosis?
A) No. There are a wide range of things going on here. Doctors understand that people might mistakenly think fibers found on their skin are connected to their disease, without the patient being delusional. If a patient has lesions or itching, then there are a vast range of possible causes for this, and doctors would attempt to diagnose and treat them. Delusions would be diagnosed if the patient claims to see things that are not there. There are some people who are clearly delusional and who are highly resistant to any hint of a psychiatric diagnosis. These people are likely to latch onto anything they feel explains their symptoms.

Q) Do people “sweat black tar“?
A) No. Again this is based on one statement, and was then picked up by the media. This time Savely was quoted as saying: “These people will have like beads of sweat but it’s black and tarry“. She was probably referring to what other people call “black specks” (dried blood, necrotic tissue, or blackheads). The imagery was just to vivid for the press to pass up.

Q) Does Morgellons cause muscle twitching?
A) No. It’s not a real disease, but the list of supposed symptoms was extended to include “uncontrollable muscle twitching” after a report (May 2006) that former Oakland A’s pitcher Billy Koch has Morgellons. The extensive Morgellons Research Foundation’s “Case Definition“, written (Feb 14 2006) a few months before the Koch report, does not mention muscle twitching even as a secondary symptom.

Q) Is it odd that some fiber analysis shows some fibers to be made of cellulose, a molecule generally found in plants?
A) No, far from it. Cellulose is what the majority of environmental fibers are made from. Paper, tissues, cotton, q-tips, linen, ramie, rayon, tencel and lyocell are all made from nearly pure cellulose.

Q) Is it true that “Dermatologists claimed the filaments were all delusions, although none had studied them“?
A) No. Dermatologists often look at samples that patients bring in, in order to eliminate the possibility of parasitic infestation such as follicle mites, scabies or lice. Filaments themselves are not delusions, they are physical objects.

Q) Where do the Morgellons sufferers on TV come from, if this is not real?
A) From the internet. The TV report have been orchestrated by Ken Cowles, the MRF director of media relations. He seeks out people in the local area who have registered with the MRF, and sets up interviews, and supplies photographs and video. The people featured are often active in promoting Morgellons on internet message boards. For example, the Alabama WKRG report featured the family of Leigh Ann Cofield, very active on the Lymebusters forum

May 28, 2006 by Delusions Media MRF Science

Neurotic Excoriations and Compulsive Skin Picking

The more you look at Neurotic Excoriations, the more it seems to match some of the Morgellons sufferers you see on television.

From stopicking.com

Neurotic excoriations refers to the uncontrollable urge to pick and dig at the skin. This urge may be unconscious or may be deliberate in the belief that it corrects some minor abnormality or surface irregularity of the skin. The picking creates more pronounced abnormalities so that a vicious cycle is started. It involves picking, digging or scraping at the skin persistently often until what is described as a “thread” can be pulled from the skin. Many old scars, which can be disfiguring, are visible near areas of active picking. These pickers usually are middle-aged adults and may be depressed, anxious or obsessive-compulsive. Women are more likely to be affected than men.

From EMedicine.com

Patients pick at areas until they can pull material from the skin. This may be referred to as “pulling a thread from the skin.”

Closely related to Neurotic Excoriation is Compulsive Skin Picking

From Wikipedia

It has been seen in psychoses of many people the ‘creation’ of foreign objects to satisfy the need to pick or damage one’s own skin. Many psychiatrists have studied this and found the only real cure is to immobilize the offending object (hands, etc.). The most success has been seen with protective casts to make the picking impossible. In these test cases the skin healed almost immediately, with outbreaks not recurring until the casts were removed.

Again, I come back to the “Delusions of Parasitosis”. I think it’s a major mistake to automatically equate Morgellons with Delusions of Parasitosis. Each case should be looked at individually, and in many cases a diagnosis of Neurotic Excoriation, or Compulsive Skin Picking, is more appropriate.

Fibers are not imagined parasites, they are just fibers found on the skin, and mistakenly though to be part of a disease.

May 26, 2006 by Science

Morgellons is not Delusions of Parasitosis

I was looking at this KTUV video, and one thing that struck me was the similarity of the lesions on the afflicted people. They were very similar to the ones on WKRG Alabama. What do these people have in common?

Here’s a picture of the lesions.

eczema_neuroticexcor.jpg

Actually, I fib. The above picture is of lesions from someone suffering from what is termed Neurotic Excoriation, related to Dermiatitis artefacta.

The picture comes from the web site Dermnet, which has a fascinating (and sometimes disturbing) comprehensive photographic overview of what might go wrong with your skin. The eczema collection alone is quite amazing, and that’s where we find Neurotic Excoriations.

untitled-8.jpg

The above photo is taken from the WKRG Alabama video.

So, my actual point here is that Morgellons is not Delusions of Parasitosis, at least not always. Based on the what I’ve seen, I think it often can be one of any number of skin conditions, compounded with simply mistaking environmental fibers as being fibers emerging from the skin. Delusions are not necessary, just a mistake.

Sure, delusions may be present in some people. But I think a lot of people are quite reasonably minded, and simply found a few ordinary fibers, and then were fooled by the web and media reports into thinking that this was a genuine symptom of their problem.

The sad thing is, this hurts them two ways. Firstly, hurried doctors diagnose them as delusional, and secondly they diagnose themselves as having “Morgellons”, in both ways depriving them of appropriate medical care.

If you think you have Morgellons, perhaps you should browse though Dermnet first, just to get an idea of the range of possibilities.

May 24, 2006 by Delusions Photos Science

Chat with Savely on My San Antonio

Ginger Savely participated in a “live chat” today.

I’ll quote a few bits:

Ginger Savely: There is no one treatment that works for all. I tell my patients
that they are all “lab rats” because this is all experimentation. I give a
combination of antibiotics (sulfa drugs, Biaxin, Cipro, Doxy are some),
antifungals (fluconazole) and antiparasitics (like ebendazole, Stromectol or
Prazequantil).

Lab rats huh, you are experimenting on your patients (see later)?

Question from Michael in Los Angeles, CA: Nurse Savely, it is often mentioned
that the highest number of cases of Morgellons are in Texas, California and
Florida. Is it not the case that these three states simply have the highest
populations of all the 50 states, and that Morgellons is actually evenly spread
over the country?

Ginger Savely: Good question. However, there is a
higher PERCENTAGE of the population of those 3 states that are reported cases.
So it is not just simply the quantity from each state, but also the higher
percentage of the total population from each state.

Not true. According to the USP database, Arizona, Georgia, Missouri, New Mexico, Oklahoma and Vermont all have a much higher percentage than California. Still, the USP sample size is small, so I’d like to see some figures from the MRF. Remember however, it’s a self reported survey, not very accurate either way.

Ginger Savely: I no longer have a practice in Texas, unfortunately. The heat
from the Texas Medical Board was too much for me here. So I have transferred my
practice to San Francisco, CA. California is a more liberal, open-minded state!
Patients who want to see me in San Francisco need to send an email to
lymesf@gmail.com asking for a new patient packet. If you have a sympathetic
local doctor you can ask him/her to contact me directly for suggestions

So, kicked out of Texas, and trying to drum up business in SF. These TV spots make for great infomercials eh?

Ginger Savely: I’m not sure but I do know that in general the medical
establishment tends to be very conservative and cautious. There is a big move in
medicine towards what is known as “evidenced based medicine”. In other words,
unless there is hard-core science behind something doctors won’t touch it

What, “evidence based medicine” is wrong? Hard-core science is bad? If you can’t figure out what is wrong with someone, then just dose them with massive amounts of antibiotics, antifungals and anti-parasitic drugs.

Ginger Savely: Yes, Rife machines are sometimes used and in approximately 30
percent of cases it helps.

Rife machines!!? Are you kidding? Better watch out for the FDA

Ginger Savely: It would be unethical to do a double blind placebo controlled
study at this stage, with so many people suffering. We just try each treatment
on each patient until we find something that works for THEM. What works for one,
doesn’t seem to work for another. This is puzzling. But right now, it is all
about getting these people better and ending or at least lightening their
extreme suffering.

Ah yes, unethical to do any kind of study. What if placebo were the most effective treatment? Are you perhaps even keeping records? Any statistics at all?

May 23, 2006 by Media Medical Professional

Border Disease!!!!

I find it amazing that the media swallows the line that cases are centered in Texas, California and Florida.Some of the more fringe “media” outlets on the web are taking this, and suggesting it must be a disease bought over the border by illegal immigrants.

Let’s look at some infographics. Firstly from Morgellons.org, we have a little map that shows the states with the most cases:
txcaflmap.jpg
See, it’s Texas, Florida and California!

Now, here’s a more detailed map from “Unidentified Skin Parasite (a.k.a. “Morgellons Disease”) Database“. Darker states have more cases.
usa_morg_mapx.jpg

Finally, here’s one from Wikipedia:
usa_states_population_colorx.jpg

Notice the amazingly high degree of correlation between the maps! This proves without a doubt that cases are highest in CA, TX and FL!!

But wait, what’s Wikipedia doing supporting this nonsense?

Actually, the Wikipedia map in not a map of Morgellons incidence. It’s a map of population.

That’s right folk, there are more cases in CA, TX and FL, because MORE PEOPLE LIVE THERE!

The only reason those states have the most cases, is that they have the most people.

You might as well go around saying that the highest incidence of people is found in California, since it is, and it’s just as meaningful.

And CBS2 news in Los Angeles gets people all scared, saying that Los Angeles has the highest number of cases of Morgellons in the country. Could this possibly be related to the fact that (excepting New York) Los Angeles has MORE PEOPLE than any other city in the US?

May 20, 2006 by Media MRF Science

The Evidence Indicates:

1. The fibers are environmental and unrelated to any illness
2. Morgellons is not a distinct disease
3. People who think they have "Morgellons" probably have a mixed variety of physical and/or mental illnesses.

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