Morgellons is not a delusion. Many people say things like “Morgellons is just another name for Delusions of Parasitosis”, or “Morgellons sufferers are imagining their symptoms”, or “doctors dismiss Morgellons sufferers as delusional”. This is all wrong.

What is Morgellons? Morgellons is a list of symptoms of unknown causes. The main symptoms are skin lesions, itching, crawling sensations, the finding of fibers on the skin, and also other symptoms similar to Chronic Fatigue Syndrome.

Where is the delusion?

Skin lesions are not a delusion. There are thousands of reasons you can get skin lesions. People get them all the time. Obviously they are not a delusion, as everyone can see them clearly on the skin of the people who have them.

Itching is not a delusion. It’s a symptom of a condition. There are thousands of conditions that can cause itching, including both medical conditions and environmental conditions. Itching and skin lesions can also cause each other, if you scratch an itch, it can cause a lesion, and the skin damage can cause more itching. This is called the itch-scratch-itch cycle, and it is not a delusion.

Crawling sensations are not a delusion. Like with itching, crawling sensations are a symptom of a condition, probably to do with the nerves in the skin. Crawling sensations are sometimes called “formication”, which is unfortunately sometimes defined as an “illusion or hallucination” that insects are crawling on your skin. This makes it sound like a delusion. But formication is not a delusion. It’s a sensation that feels like insects crawling under your skin. It is like when you have a high fever, but you feel cold. It’s not actually cold, but it still feels cold. Is that a delusion? No, it just feels like it is cold because the fever is creating the “illusion or hallucination” of cold. Really it’s just a sensation, and calling it a “hallucination” is a bit much. It’s not like you saw a ghost or something. Formication is not a delusion.

Finding fibers on the skin is not a delusion. If you can see a fiber (and other people can see it too), then it’s real. Fibers are everywhere. It’s not at all unusual to find fibers on your skin, I find them myself all the time. Skin also has a lot of fibers, and things that could look like fibers, naturally in it. Things like hair, blood vessels, nerve fibers, skin tissue and sebum. These are not delusions.

I don’t think it is right to say “Morgellons is a delusion”. Lots of people have these real symptoms. They believe that their symptoms are linked to the fibers, and that this mean they have a distinct disease. I agree with the CDC when they say there is not sufficient evidence to say that Morgellons is a distinct disease, and I don’t think the fibers are related to the majority of the symptoms. So I think many people are making a mistake in saying they “have Morgellons”. I also think their health might suffer because of this mistake.

Morgellons is not a delusion. It’s a list of symptoms with many causes. Sometimes people have very strong beliefs about the connection between finding fibers and their other symptoms. Sometimes they describe things that sound impossible, like fibers moving by themselves and crawling out of the skin. If all the evidence shows the fibers are not connected to the symptoms, and they continue to believe unusual things about the fibers, then that might mean they are delusional about that.

But that does not mean their other symptoms are not real. Lesions, itching, crawling sensation, and even finding fibers, all these are real things. The fact that some people have some specific delusions about a part of their health does not mean that all their health problems are delusions. They have their health problems, and they maybe have some delusions. For some people, their delusions might be so strong that they interfere with treating their other symptoms. But this does not mean that all their symptoms are delusions. Morgellons is not a delusion, it’s a list of symptoms.

(addendum)

This is not just semantics. Doctors are quoting as saying that Morgellons IS Delusions Of Parasitosis, and you can treat it with Orap. Suppose a 50-year old woman goes to the doctor and says she’s itching, has a sensation of insect crawling under her skin, she’s breaking out in acne, the itching makes her scratch so much she bleeds, she has muscle and join pain, vision problems, hair loss, swelling, fatigue, irritability, insomnia, inability to concentrate, depression, memory loss, headache, anxiety, and nervousness. She saw the ABC special on Morgellons, and examined her acne and found some fibers. So she begins to think she has Morgellons. She goes to the doctor, says “I think I have Morgellons”, and hands him a printout of the MRF case definition, and a plastic bag with some fibers and specks she found in her lesions, and urges him to look at the fibers on her skin. So, should the doctor prescribe Orap?

No. She does not have Morgellons, she has Menopause (menopause is the medical condition that most closely matches the Morgellons list of symptoms, and a very large proportion of people who think they have Morgellons are women of menopausal or perimenopausal age).

The doctor should prescribe treatment for the symptoms, possibly HRT for the menopause, they should explain that the formication and other symptoms are common effects of menopause, they can be reduced with treatment, and will eventually go away. He should explain that the fibers are probably just lint or hair, and that the CDC says there is not enough evidence to say Morgellons is a distinct disease.

Then if she remains convinced that Morgellons is behind this, and this is interfering with her health, then the doctor should treat that delusion as well as the other symptoms. She may be delusional, but she’s still menopausal.

Morgellons is not a delusion. It’s a broad list of symptoms with no evidence of a common cause. It’s easy for some people to think they have it, since the symptom list is so vague. Sometimes people become obsessively convinced they “have it” and that the fibers they find on their skin are connected to “it“, and they start picking them out. That’s a delusion. Sometimes the other symptoms are somatic manifestations of the delusion, and the Orap will fix them, but a lot of times the delusion has a physical basis that also needs to be addressed. Sometimes, the delusion is just a mistake.

The CDC has been talking about looking into “Morgellons” for a while, and I’ve been surprised they never mentioned it on their web site, despite having a phone line set up to take Morgellons related messages. Well, they finally put up a page.

http://www.cdc.gov/unexplaineddermopathy/

It lists the symptoms of Morgellons, and says:

The etiology of this condition is unknown, and the medical community has insufficient information to determine whether persons who identify themselves as having this condition have a common cause for their symptoms or share common risk factors.

This is exactly what I’ve been saying all along. There is no evidence that Morgellons is a distinct disease. There is no evidence (insufficient information) that people who say they have Morgellons have anything in common other than their symptoms. There is no evidence of a single cause.

They also say something else I’ve always been saying:

Persons who believe they may suffer from this condition should contact a healthcare provider for evaluation and medical care.

Morgellons is currently a list of symptoms. A very long list of symptoms that can be caused by a very large number of conditions. Sure, you can “have Morgellons”, but that just means you have some of the symptoms. It does not mean you have the same thing that other Morgellons believers have.

The CDC is saying that, since there is no evidence of a common cause for this set of symptoms called Morgellons, if you have some of these symptoms, then you should go to a healthcare provider, so they can try to determine the actual causes of your symptoms, and fix them, or at least treat your symptoms.

On the title of the CDC page: “Unexplained Dermopathy” – that particular phrase was created just for Morgellons, it produced zero Google hits up until yesterday. “Dermopathy” is a disease of the skin. When a disease is “unexplained”, it is often referred to as being “idiopathic“. A very large number of skin conditions and symptoms are idiopathic. For example, Erythema Multiforme is a disease with many symptoms very similar to Morgellons (lesions, itching, malaise, joint pain and vision problems), yet 50% of the cases of EM are idiopathic. So “Unexplained Dermopathy” is really not a very good name for a distinct disease. On the other hand, it’s a good name for a large collection of unexplained cases of various dermatological symptoms.

Randy Wymore is an associate professor of pharmacology and physiology at Oklahoma State University Center for Health Sciences. He is also the Director of the OSU-CHS Center for the Investigation of Morgellons Disease, a newly formed organization that has grown out of Wymore’s work investigating what is know as “Morgellons”. The CIMD has the following vision statement:

http://www.thenmo.org/CIMD-vs.pdf

Which says in part (emphasis mine):

Morgellons is a multi-system disease of unknown etiology
Morgellons disease is discounted by many public health officials and physicians
Physical and neurological symptoms are often dismissed or ignored
Sufferers are labeled with delusions of parasites or neurotic excoriations
OSU-CHS physicians/researchers have physical evidence of Morgellons Disease
Morgellons is not psychiatric in origin
Morgellons is an emergent disease
The Center for the Investigation of Morgellons Disease will facilitate successful research,
treatment and an eventual cure for Morgellons Disease.

and then goes on to list the ways in which Morgellons will be researched, treated and cured.

Wymore has also released a much longer personal position statement, dated Jun 19, 2007:

http://www.thenmo.org/RWud0607.pdf

Which confirms what was said in the vision statement:

6. There is no clear and simple diagnostic test yet to confirm or rule out
Morgellons. Still, 100% of the patients, that were felt to genuinely have
Morgellons Disease [about 29 patients], have large microscopic-to small macroscopic fibers visible
under their outer layer of skin
. These fibers are not associated with scabs or
open lesions, nor are they under scarred tissue. The idea that Morgellons fibers
are mere fuzz and lint, simply sticking to the lesions and scabs, is not possible
based on the observations that were just described. These fibers are under
“normal-appearing” areas of skin. In contrast, such fibers have never been
observed in even one person who does not claim to have Morgellons
. Clearly,
there is something different in the skin of purported Morgellons sufferers
compared to the non-Morgellons population.

That seems at first glance to actually be a “clear and simple diagnostic test”. 100% of Morgellons patients had fibers, 0% of non-Morgellons patients had fibers. With a 100% success rate, even 29 samples gives you a high degree of certainty. What’s the problem here? Patient sampling is often an issue, so where did these patients come from? Wymore says earlier:

Of the thirty or so patients claiming to have Morgellons disease, that clinical faculty have examined in facilities associated with OSU, only one patient likely did not have Morgellons.

That’s quite an impressive set of statistics. 97% of all patients that claimed to have Morgellons, and were examined by OSU, were found to have visible fibers under unbroken skin, and these fibers have never been observed in people who did not think they had Morgellons. How is this not a “clear and simple diagnostic test”?

Unfortunately, we can’t say, because Wymore will produce no evidence. What do these fibers look like? If they are visible under unbroken skin, then why are there not 29 photographs of fibers under unbroken skin? Why not even one photo? Have these visible fibers actually been examined visually by a dermatologist to make sure it’s not just ingrown hairs, or blood vessels, or nerve fibers, or some symptom of one of the thousands of dermatological conditions with which Wymore is not familiar? Patients who claim to have Morgellons will scratch themselves. Perhaps the scratching results in the fibers becoming embedded in the “unbroken” skin? Or perhaps scratching results in the existing fibers in the skin (hairs, blood vessels, etc) becoming visible. If these fibers are as easily found as has been suggested, then why, after more than a year, has there been no clue released as to their chemical makeup? Not one test result? What is the background of the patients? How were the patients selected? How long have they been scratching themselves? What diagnosis does a dermatologist make of these patients after being presented with the Morgellons evidence?

Wymore might say this lack of evidence is because “The writing of manuscripts, for submission to scientific and medical journals, detailing our observations is a work in progress.” But that’s misleading. Wymore has already published his conclusions. He shouts from the rooftops that “Morgellons is an emergent disease”, and “Morgellons is a multi-system disease of unknown etiology” and “Morgellons Disease is real physical pathology of unknown cause.” He announces these conclusions without evidence. He goes on television to announce these conclusions. He releases “vision statements” and “position statements” that clearly state these conclusions. All without a shred of evidence. After over a year of research, still no evidence.

Wymore is a big fan of the academic process. He spends the largest section of his position paper in mocking “debunkers”, such as myself, calling them “amateurs”, “not scientific” and “laughable”. He decries my web site as “at the very least, a waste of valuable time and at the worst, hurtful”, because I’m not going to talk anyone out of their delusion. Now I’ve had a lot of praise for my web site from individuals, journalists and scientists, and I’ve even had several emails from itchy people who did in fact find lint on their skin, and though they had Morgellons, and only realized what it actually was after finding my web site. Of course, if someone is chronically deluded then nobody can talk them out of it. I have no illusions there, and it should be obvious that that is not what this web site is about.

It seems a little odd to me that Wymore should spend a page devoted to pointing out how non-academic internet debunkers are, and how their amateur efforts will hurt rather than help, and then on the next page says:

I applaud the many
physicians and nurses who ARE attempting to treat Morgellons Disease by trying
different strategies. It will be wonderful if one of them stumbles onto a complete
cure for the disease. In an academic or medical school setting that approach is
not workable. Before human subjects can be used or so-called clinical trial
established, there must be an arguable rationale for the treatment.

So, it’s fine for Stricker and Savely to sell expensive long term antibiotic treatments to people who think they have Morgellons? Treatments have have NO SCIENTIFIC EVIDENCE of efficacy. Treatments that are based on a theory that Morgellons is related to chronic Lyme, and treatments that are so far out of the mainstream that Savely was forced out of her Texas practice for prescribing them? It’s fine for Wymore’s friends to do things that even he says are not workable in an academic setting? Why? Because they care?

Professor Wymore cares a lot about the suffering. I suspect Stricker and Savely care a lot too. The patients desperately want to be believed. By believing them, Wymore makes them feel a lot better, and they are very grateful to him. By believing them and giving them “treatments”, Stricker and Savely also make them feel better, and they are grateful to them (but poorer).

I care a lot. I care for the patients. I care for the people who are sick. I want the people who are sick to get better. I want people who are not so sick to not get worse. I want them to get appropriate medical treatment. I want them not to waste time and money with quack remedies for a disease for which there is not evidence of existence.

What I want, perhaps most of all, is for people to realize that “disease or delusion” is a false choice. When I say that “Morgellons is not a distinct disease”, or even if I were to say “Morgellons is not real”, it does not mean “you are delusional”. If you are sick, I don’t know what is wrong with you. I don’t know if you are delusional or not. I don’t know what is wrong with your skin. I don’t know why you itch. There are thousands of possible reasons for your symptoms, and I don’t know what is behind your particular symptoms. All I know is that nobody has ever produced any evidence that Morgellons is a distinct disease or a “real physical pathology”. Nobody has produced any evidence that the fibers are in any way involved. Yet they continue to talk and act as if they have. They need to put up or shut up. It’s the ultimate in bad science to announce your conclusions with 100% certainty, and then expect people to make health-care choices (and even prescribe treatment) based on those conclusions, without offering any evidence.

I wrote two articles inspired by Occam’s dictum to not multiply entities beyond necessity. The first, Occam’s Hot Tub simply proposed one particular possible cause of the symptoms that people claim are a new disease called Morgellons. The second, Occam’s Menopause, noted that all the symptoms of Morgellons are also caused by menopause, and since there are a lot of middled aged women in the Morgellons demographic, that probably explains a lot of cases.

People who think they are infested with something often look through a microscope, and sometimes they see things they cannot identify. One of the more interesting and common things is the “starfish“, which looks like this:
sf3.jpg
and here’s another:

Rather unusual little things that’s for sure. If you found those emerging from your body, then you’d be forgiven for being a bit suspicious. So what the heck are they?

As it turns out, nothing at all unusual. They are stellate trichomes, also known as stellate hairs or star hairs. Stellate hairs are star shaped hairs found on the leaves of plants. Here’s two from oak leaves:
acucor1b.jpg
They float around in the air, and get stuck in things, just like lint does. If you live close to oak trees, you’ll probably find them on your skin, and certainly in nasal mucus. They get stuck in amber:

stellat.jpg

So what is this to do with Occam? Well, it’s a lesson in hindsight. If you find something unusual looking on your skin, something that looks like a weird gelatinous spider or starfish, what explanation should you favor? You don’t know what it is, so either way you’d be introducing a new entity. But “a bit of plant matter I’ve never seen before” is a lot simpler than “a fiber producing pathogen new to science”.

But the real test of Occam for the person who thinks they have Morgellons is when they ask “so, I can see that’s a Stellate Trichome, so why are plants growing inside my body?”. Here again, there are two explanations: some stellate hairs were carried by the wind into your sore, and you found them later with your microscope, or there is some parasitic plant growing inside your body. To the person who wants to be diagnosed with Morgellons, the second answer, although perhaps infinitely less likely, is more attractive.

There’s a little more on trichomes, they can produce allergic reactions. eMedicine says of sunflowers: “An occupational allergic contact dermatitis is often found in individuals who harvest this flower. The major allergen is known as 1-0-methyl 1-4,5-dihydroniveusin A. The pollen is said to be a minor allergen. Trichomes, or small hairs, on the surfaces of the leaf secrete the allergens. Windblown trichomes from dry plants can cause airborne contact dermatitis.”

Morgellons is not a distinct disease, it’s just a list of symptoms that are caused by many other diseases and conditions. Some people who think they have Morgellons probably have skin allergies that gives them contact dermatitis. In this particular case, they may well examine their lesions and find the cause of their problems is a translucent starfish. In this case, they would be correct. But it’s not “Morgellons”.

© 2012 Morgellons Watch Suffusion theme by Sayontan Sinha