Science

“This” Disease

What we have here, is a failure to communicate.

“I have this disease!”, “this disease is real!”, “I have this”, “the symptoms of this…”, “this terrible disease”.

The problem here is one of language. Saying “this” makes “it” sound like a real disease that has been discovered and that people have been diagnosed with. “This” indicates something concrete, but is being used for something intangible.

When someone says “I have this disease”, they really mean “I have some of the symptoms listed on the Morgellons Research Foundation web site, I found some fibers on my skin, so I’m assuming both that Morgellons is a real disease, and that I have Morgellons”.

Being a language problem, we can’t do much about the problem, we can’t change the language, we can’t even explain the problem very well. But we can be aware of the problem.

“This Disease” is a linguistic shortcut that allows you to travel from symptoms to diagnosis without the usual logical and scientific steps that are required inbetween.

Morgellons vs. the Ulcer

This is Helicobacter Pylori:

Heliobacter Pylori

It’s a bacterium that lives in the stomach. About 40% of Americans are infected with it. In most people it does nothing harmful, but for some people it is involved in the production of stomach ulcers. Treatment with antibiotics that target H. Pylori will cure and then prevent the recurrence of stomach ulcers.

What has this to do with Morgellons?

Firstly, the story of the discovery of the connection between H. Pylori and ulcers is a rather romantic one. Scientists originally were unsure what caused ulcers, but though stress or eating spicy foods might contribute. One maverick scientist though that bacteria might be involved after a colleague found some H. Pylori via biopsies of people who had ulcers. This was just 25 years ago, in 1981.

His peers though this idea was crazy, as bacteria could not establish colonies in the harsh acidic environment of the stomach. To prove them wrong, the scientist drank a bunch of the bacteria, and got sick. He then found that H. Pylori was living in his stomach. Subsequent research demonstrated a clear link between H.Pylori infection and Ulcers. The scientist went on to win the Nobel prize for his work.

Mary Leitao, the founder of the Morgellons Research foundation has this to say about H. Pylori.:

My take on why this organism has not been identified is similar to what happened with the discovery of Helicobacter pylori and ulcer disease.

So, is there any similarity here?

No.

In 1981 Peptic ulcer disease was very well documented. Several million cases of peptic ulcers were diagnosed each year. The clinical manifestations of Peptic ulcers were clearly defined. A clear diagnosis could be given. The existence of the ulcer could be determined via X-Ray and endoscope. Effective pallative treatments were available. They simply did not know what caused them, or how to prevent them.

In 2006, there is no scientific documentation on Morgellons. No cases have been documented in a clinical setting. No diagnosis of Morgellons can be given, no standards exist for determining if the disease even exists. Since we don’t know if it exists as a distinct disease, we don’t have any treatments for it. You cannot find a causative agent for something that is not defined.

The first step towards finding a treatment for a new disease would be to establish that the disease actually exists. This has not been done for Morgellons. How can you tell if you have cured something if there is no standard for saying if you have it? With ulcers, the connection is clear, you can tell if someone has an ulcer with endoscopic examination. You can tell if they have H. Pylori infection with a sample and culture. Statistical studies show that without H. Pylori there are no ulcers.

Since there is no standard for what constitutes “Morgellons”, there is no standard for what constitutes “cured of Morgellons”. If the Morgellons Research Foundation wishes to be taken seriously, they must first take the step of clearly demonstrating that the disease actually exists.

Then we can move on, and examine the effectiveness of tests and treatments.

Mary Leitao, you can’t identify a causitive organism before you identify the disease.

We know what ulcers are. What is Morgellons?

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.

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”

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

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.

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.

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?

The problem with DOP

DOP is Delusions of Parasitosis (the irrational belief that one is infected with parasites). People who think they have a condition called “Morgellons” sooner or later get an diagnosis of DOP.

This has led to a tendency to equate Morgellons with DOP. I think this tendency is not helping, for a variety of reasons.

Firstly, not all Morgellons sufferers claim to have parasites. Many claim that it’s complication of Lyme disease, or other bacterial infection. Some claim a virus, some claim a depressed immune system for a variety of reasons, some quite outlandish (chemtrails, biowarfare, etc.)

The common elements of a “Morgellons” case are fairly simple:

1) Fibers found on the skin that are thought to be associated with their health problems.
2) Some Medically Unexplained Physical Symptoms
3) A belief in misdiagnosis by their physician.

The fibers are generally real objects, although sometimes the patient reports fibers that jump in and out of the skin, and even fly around the room. However most “fibers” are real, and generally resolve to lint, hair or sebum excretions.

Medically Unexplained Physical Symptoms (MUPS) is nothing new to the medical world, and treatment of MUPS has always been a problem. One thing that complicates MUPS is when a patient becomes “difficult”, and begins to self-diagnose in an irrational manner. If the MUPS is suggested to have some somatic or psychological component, the the patient is often very resistant to any kind of psychotheraputic treatment, as they tend to vehemently reject any connection between their mental state or lifestyle and their physical ailments.

Which brings us back to DOP – if the tendency is there to equate Morgellons with DOP, then the patient is far more likely to enter into a diagnostic dialog in a highly distrustful and defensive state of mind. Their conviction in their own self-diagnosis will only become stronger as they mentally reject and retreat from the possibility of a somatic component, or any kind of delusion.

Thus, although it is tempting to equate Morgellons with DOP, it is both incorrect and potentially harmful. Diagnosis of DOP should be reserved for specific cases where an irrational belief in parasites is present. Other cases self-diagnosed as Morgellons would better be described as MUPS, as this is a more accurate description, and less polarizing for both patient and physician.

Why don’t doctors get Morgellons?

People suffering from Morgellons are constantly going to see doctors. These doctors are generally dismissive of the symptoms of fibers coming out of the skin.

The Morgellons Community claims there are thousands of people with Morgellons. Many also claim that it is a contagious disease.

If so, then why have none of these skeptical doctors ever been infected with Morgellons?

Think about it, if 10,000 people have Morgellons, they have probably been to see a doctor at least 10 times, that’s at least 100,000 times a doctor has been in contact with a Morgellons sufferer. (Probably more like 1,000,000).

Why, over all those visits, being in close contact with the patient, has a skeptical doctor never been infected?

This lack of infection proves with a very strong degree of confidence that either Morgellons is not a contagious disease, or that conventional Doctors are somehow immune to it.