Morgellons Watch

Recently (April 2006) a member of the Morgellons Community, a young man, died of a drug overdose. He was one of several patients of Ginger Savely, a Texas Nurse Practitioner who offers diagnoses of Morgellons to those who seek it.

This young man was very intelligent and well-spoken. He was also a self-admitted drug abuser, taking a wide range of drugs including heroin. He was very open about this, and discussed his extensive drug use, and his related health problems, at great length on a large number of internet posts.

After he was “diagnosed” in early 2005, he apparently became increasing depressed and paranoid, believing that he was the subject of biological and electronic harassment.

His passing is very sad, but it is made sadder in that the Morgellons Community will memorialize him as a victim of Morgellons. I think that “Morgellons” probably did contribute a little to his fate, but not in the way that Savely and other would suggest.

It is very, very, sad.

From “greta” at LymeBusters:

Scott F. Stoeffler, Senior Research Microscopist of McCrone Associates, Inc. “identified” my fibers. Got the actual bill today $820.00! They told me it would
be $600 charged on the credit card.

I got the written report too, my fibers were identified as follows: black wool fibers, red wool fibers, blue wool fibers, colorless wool fibers, colorless polyester fibers, a blue polyester fiber, colorless cotton fibers, blue cotton fibers, a pink acrylic fiber, and a green acrylic fiber. They were examined by polarized light microscopy. He sent one photomicrograph depicting typical woolen fiber from one of my samples.

And from “Sidney”

The NPA worked with McCrone’s - Chicago, back in the 90’s, when Dr. Walter McCrone was still living, interested in the fiber-skin issues, and either Dr. McCrone or Dr. John Shane, McCrone’s chief researcher at the time, designed a protocol for us to follow. Participants strictly adhered to the protocol. As I recall there may have been twelve of us who submitted “specimens” to McCrone’s Research Laboratory.Shower, shampoo, air dry, no towels, no hair dryers, no sitting on upholstered furniture during the process of combing and collecting from our skin.Results same as yours! Various fibers identified by content and color including Flax, Wool, Lycra, Cotten, Polyester, etc.

Thanks for sharing this information and naming the lab involved. Maddening that it was such an expensive process for you. I recall that it was an expensive process, but the amount you were charged is outrageous.

Okay, so a whole bunch of people had their fibers tested, under fairly rigerous conditions, and the results were that the fibers were regular household fibers.

Yet the response is simply to deny the results, and complain about the cost. Why would the labs make up results? Seems like the submitters had already made up their minds about the fibers and were just seeking validation.

Fibers are everywhere. They float in the air and land on you after showering, and they also remain on your skin even after showering.

Here’s McCrones:

http://www.mccroneassociates.com/techniques.html

Seems reasonable to me.

Morgellons folk say they all have the same symptoms.

• You research the internet and so easily discover that Elliot’s disease, National United Skin Parasites Association, the Fiber Disease, and Morgellons are all one and the same. Ironically, all of the people with the exact same symptoms that you have, have been receiving the same faulty diagnosis

What are these symptoms? What does MRF have to say? Well, they have two pages, one on “symptoms, and one that proports to be a case definition. Symptoms:
http://morgellons.org/symptoms.htm
Most individuals with this disease report disturbing crawling, stinging, and biting sensations, as well as non-healing skin lesions, which are associated with highly unusual structures. These structures can be described as fiber-like or filamentous, and are the most striking feature of this disease. In addition, patients report the presence of seed-like granules and black speck-like material associated with their skin.[...] More significant than skin symptoms, in terms of the diminished quality of life of the individual with this illness, are symptoms unrelated to skin, to include Chronic Fatigue Syndrome (CFS), Fibromyalgia (ME), joint pain, and significant problems with concentration and memory.
Remarkably, not all people with this disease have overt skin lesions, as some individuals report intact skin. The troubling sensations and accompanying physical structures, are the consistent clues to this infectious process

http://morgellons.org/case.htm
[...]The following case definition of Morgellons disease has been developed by physicians on the medical advisory board of the Morgellons Research Foundation[...]

Now, I’m not going to post the entire thing here, as it’s quite long. But I’ll paraphrase the important parts:

• Lesions may or may not be present, they might be a symptom of the disease, or the result of scratching. They might look like pimples, or hives, and may or may not contain pus.
• Crawling sensations can occur anywhere on the body.
• Fatigue is always present.
• There will be behavioral effects that are diagnosed as psychiatric disorders (the implication is that they do not have these disorders, but the symptoms indicate Morgellons).
• Fibers are reported in and on lesions and on the skin. Fibers may be any color size or shape. Granuals of any size or shape are found on the lesions and skin. Fuzzballs up to 3mm in size are found on lesions and skin.
• Additonal symptoms include: vision changes, neurological changes, gastrointestinal changes, skin changes, Musculoskeletal changes.

Other than the fibers, what we have here is a catch-all of symptoms. Anyone who has some chronic condition cannot fail to have some of these symptoms. NOBODY has them all.

One can become a “Morgellons” sufferer simply by matching a few of your symptoms to the list, and then examining your skin for fibers - which everyone has on their skin.

What about those other conditions mentioned: Elliot’s Disease? Well, Elliot’s Disease research Library links to this article about “this disease”
http://explorepub.com/articles/omar_10_2.html#top
This gives a simpler definition:

• It is characterized by neurological sensation of movement subcutaneously and/or in deeper tissues and cavities that is usually associated with mucoid cutaneous lesions from which one or more species of arthropods as well as unidentified fibers may be recovered.

Unfortunately, although this is a shorter definition, it’s actually even less precise than the Morgellons.org definition. We have a “sensation of movement” either on the skin or somewhere on the body, usually with lesions but not always, and either with or without arthropods and with or without fibers. Based on that definition - I’ve got it, since my scalp itches a bit right now. Yours probably does too.

Moving on, NUSPA has a nice page of symptoms:

http://www.skinparasites.com/id12.html

They focus on a very broad range of symptoms of infestation by a parasite, insomnia and the specks and fibers. Nowheres does it mention fatigue or any neurological complain. This is obviously very different to Morgellons.

Then there is “The Fiber Disease” - this seems to be a term popularized by the biology-online forum thread.
http://www.biology-online.org/biology-forum/about1958.html
Unfortunately, they don’t list the symptoms anywhere I could find. But individual posters report a very wide range of symtoms.

Okay, finally my point:

Not everyone has the same thing.

There are so many different symptoms, it’s impossible to describe this as “a disease” or even “a syndrome”. Everyone has different symptoms, everyone responds differently to treatments. The term “Morgellons” was invented to describe a child’s skin problems, which he is now cured of, and which have no relation to the symptoms described by the vast majority of sufferers.

Karla McLaren was a new-age healer and teacher. An author with several books like “Emotional Genius” and “Becoming an Empath”. A self described “full-fledged member of the New Age culture for over thirty years”.

Then, a few years ago, she became a skeptic, and she wrote this wonderful article that explains in part why it took so long.

http://www.csicop.org/si/2004-05/new-age.html

In a very similar manner we have two cultures in the area of Morgellons. One of rational skepticism, and one of alternative beliefs. What these two culture have is a failure to communicate. Karla gives a heartfelt request that I’m sure many Morgellons sufferers would agree with:

“I would ask you to respect our humanity, and approach us not as if you are reformers or redeemers. I would ask you to approach us as fellow humans who share your concern and interest in the welfare of others. I would ask you to be as culturally intelligent as you are scientifically intelligent, and to work to understand our culture as clearly as you understand the techniques, ideas, and modalities that have sprung from it. We are a people, not a problem“

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”