May 2006

Cause and Effect

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.

Fiber test from a Lab

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:

Seems reasonable to me.

We all have the same symptoms!

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:
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
[…]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”
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 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:

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.
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.

Bridging the chasm

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.

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

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.

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”

Schwartz, CIA, France, Bottled Water.

Mr Schwartz, a recently defrocked doctor, is one of the supporters of Morgellons sufferers.

Schwartz said he talked to a man who said he used to work with the CIA, and the man told the doctor about a government-developed bacteria that got out of control in France. That theory would substantiate claims that Morgellons has come from bottled water from France, Schwartz said. Schwartz said he is not sure what to think of the theory that the disease comes from imported bottled water because some of his patients don’t drink bottled water

One wonders then, why there would not be more Morgellons in Europe?

Schwartz is either a quack, exploiting people’s fears for money, or he simply shares and reinforces the delusions of those he “treats”. Good job he can no longer pescribe medicine or peddle narcotics.

Duval County report

While looking into the CDC’s actual interest in Morgellons, I came across this report from the Duval County Health Department:

The Duval County Health Department Epidemiology Program began to receive phone calls from the public in February 2005 regarding a skin condition called Morgellons Disease recently highlighted in local news reports. DCHD initiated an investigation into the epidemiology of Morgellons Disease in Duval County. Each reported case was documented and investigated, and the feasibility of designing an epidemiologic study was considered.
The following chart represents all of these inquiries which include telephone calls, emails, and written letters. Calls began in February 2005 and DCHD continues to receive sporadic calls. Although there appears to be a cluster of reports around March 3,2005, this is attributed to the airing of Fox News’ coverage of the illness and is not a true cluster of disease.
DCHD Epidemiology consulted a pediatric dermatologist within the health department for his professional opinion. It was concluded that this is a psychological condition that has been mentioned in literature for hundreds of years, and further dermatological research is not practical. DCHD then consulted with the Centers for Disease Control and Prevention in Atlanta, GA. The reply was the same in that there was no interest to support research into Morgellons disease

I wonder if this is how somehow got the idea that there was a “team” assigned to investigate Morgellons. Here’s another version of the report, as a FAQ:

Due to high media interest the following personnel were involve with initial research:
Dr. Zaheer, C. Bailey-GOC II, R. Kay-EIS, and R. Alcantara-RN; to this date continued research personnel include: Dr. Zaheer, S. Jones-GOC II, S. Traynor-EIS and R. Alcantara-RN.

The team investigated, and deduced the normal skin conditions, sprinkled with DOP.

[UPDATE: 5/26/2006] After similar reports in May, the Los Angeles County Department of Health Services released a brief statement:

No credible medical or public health association has verified the existence or diagnosis of “Morgellons Disease.” The current description of the disease is vague and covers many conditions. Until there is a credible, national standard for the diagnosis of this condition, there is no basis for making it a reportable disease. Concerned individuals should have careful clinical and laboratory investigation of their serious skin irritations, but at this time there is no reason for individuals to panic over unsubstantiated reports of this disease.

Do you want to have Morgellons?

Okay, so you are ill. You have bad skin, you feel tired, you can’t think very well, you itch, you find fibers on your skin, and doctors don’t take you seriously.

There are a number of diagnoses that might cover many of your symptoms. But let’s assume for now you have a novel infectious disease which we shall call “Morgellons”.

Now, how do we know this is a disease?

Let’s consider another diagnosis – one that many people feel is related – “Chronic Lyme“. Many people seek out a diagnosis of Chronic Lyme, thinking this diagnosis with allow them to deal with their problems. People even report great happiness when they are finally, after much effort, are diagnosed with Chronic Lyme. Believers congratulate one another. Typical quotes from the previous link:

  • “I feel vindicated”
  • “It’s a milestone to be diagnosed with Lyme disease”
  • “Congratulations”
  • “congratulations on getting a diagnosis ! what great good news ..bad news “
  • “Getting the Lyme dx, I was elated, happy to finally know what I had..”

These people are HAPPY that they have Lyme. Finally they can put a finger on the cause of their fatigue. What’s the problem here? There is not much evidence to support the concept of late stage Chronic Lyme – studies show people who have had Lyme do not get sicker than people who have not.

Sure, these people are sick – but lots of people get sick, lots of people have chronic symptoms of eczema and fatigue for no known reason. The difference here is that some people are so desperate for a diagnosis, that they either diagnose themselves, or they seek out a doctor who will give them the diagnosis they seek.

The people who choose Chronic Lyme to explain their symptoms are fortunate in that they choose a real disease, that might actually occur in chronic form. It’s also fairly new, so the literature is still in flux. The fact that the CDC and AMA downplay the incidence of Chronic Lyme does not dissuade them, they have choosen Chronic Lyme, they seek out a friendly doctor, and they start happily “treating” their disease.

People who choose Morgellons are less fortunate. Morgellons is not based on a real disease, so they have to claim it’s an unidentified infectious agent. They still want the joy of validation, they seek a diagnosis. Unfortunately there are no friendly doctors. They are reduced to diagnosing themselves, and forming support groups to diagnose each other, and pescribing each other treatments, to validate and reinforce their own belief.

Statistics do not Chronic Lyme is not the epidemic some people claim it to be, it is probably a mistaken diagnosis in a large part of the group that claims to have it. They are simply unhealthy, as many people are, particularly in America.

Similarly, Morgellons is just a collection of chronic symptoms that are typical of a percentage of the demographic that reports those symptoms. You are not the carrier of some novel infectious agent, you are simply getting old. Seeking a diagnosis of some exotic disease is a very seductive idea. Unfortunately, in all likelihood, you are simply getting a bit older, and are in poor health – in part due to stress, bad diet and lack of exercise.

The seductive diversion of “Morgellons” is an illusion. It is wasting your time, and the “treatments” are probably making you sicker.