The Morgellons story that is fed to the media contains several talking points that the reporters gladly repeat, ignoring the most obvious of explanations. Fibers are found on the skin. Fuzzballs are somehow deemed to look unusual. Fibers are found to glow under UV light. Patients’ physical symptoms are dismissed as psychological. Patients did not make their own lesions.

One that comes up over and over, is that Morgellons is found most in California, Texas and Florida, and there are hotspots of it in various cities. This is generally quite explainable by the fact that more people live in those states, and cities, so obviously there would be more cases there. But there is one claim that seems to actually give weight to the MRFs claim of an unusual distribution. From their web site:

Although California represents 12% of the US population, 24% of all families in the U.S. who have registered with the Morgellons Research Foundation reside in California

So that’s twice as many cases as you would expect by random chance! Clearly something is going on! Does this prove Morgellons?

Firstly, it simply shows that the MRF database does not represent a random sampling of the US population. You could interpret this in a number of ways, both pro and con. If Morgellons were an infectious disease, then you could argue that you would expect a more even spread, and the concentration in California perhaps indicates it’s something environmental, like ticks. (unfortunately, most ticks are in the Eastern US).

But we don’t really need to reach very far for explanations. Indeed, we should be remembering Occam here, and not introducing new entities into the mix. The reason for the high concentration of cases in California can be found on one page of the MRF’s web site, their list of television news stories about Morgellons.

http://morgellons.org/tele.htm

One thing that becomes clear is that there are simply a lot of television shows on Morgellons that showed in California. I broke it down into California and Texas

Station City State Shows Population (Metro) Exposure
KTVU San Francisco CA 3 7,236,391 21,709,173
KCBS Los Angeles CA 2 12,950,129 25,900,258
KGTV San Diego CA 1 2,941,454 2,941,454
CBS5 San Francisco CA 1 7,236,391 7,236,391
        TOTAL CA 57,787,276
KXAN Austin TX 1 1,513,565 1,513,565
KVUE Austin TX 1 1,513,565 1,513,565
KPRC Houston TX 1 5,539,949 5,539,949
WOAI San Antonio TX 1 1,942,217 1,942,217
KHOU Houston TX 1 5,539,949 5,539,949
KENS San Antonio TX 3 1,942,217 5,826,651
        TOTAL TX 21,875,896

Look how much bigger the cities are in California. Even though the number of shows is about the same, there’s nearly three times the audience exposure in CA as there is in TX. When you take the relative population of CA (36.5Million) and TX(23.5 MIllion), you come up with a figure of 1.7 times. That 1.7 times as many people (as a percentage of the state population) in California saw a local TV show on Morgellons as did in Texas (math: (57.7/36.5)/(21.8/23.5) = 1.7). Given that the Texas figures are also going to be above the national average, due to its extensive local TV coverage, then it’s hardly surprising that California has 2 times the national average of the incidence of people who heard about Morgellons and decided to visit the MRF web site, and eventually register.

So you see, the MRF’s database IS a random sampling of the US population. Just weighted by media coverage.

 

“patients’ symptoms are often dismissed as psychological by health care practitioners”
Morgellons Research Foundation web site

 

“Physical and neurological symptoms are often dismissed or ignored”
Oklahoma State University Center for Health Sciences Center for the Investigation of Morgellons Disease

The above statements are representative of something that is often repeated regarding Morgellons, in that the patients are somehow being ignored, or dismissed. Particularly that their symptoms are being dismissed as “psychological”.

This conjures up various scenarios, of various plausibility for each of the Morgellons symptoms:

Patient: Doctor, I’ve got this horrible itching sensation, it keeps me awake at night, it feels like bugs crawling under my skin.
Doctor: You’re just imagining it.

Patient: Doctor, I’ve got these nasty looking sores on my arms
Doctor: You’re just imagining them

Patient: Doctor, I feel tired all the time.
Doctor: You’re just imagining it.

Patient: Doctor, I found some fibers on my skin, some were in the sore I showed you.
Doctor: You’re just imagining it.

Patient: Doctor, I saw a cobalt blue fiber poking out of the scalp, I tried to pull it out, but it withdrew back into the scalp and reappeared a few moments later in another area
Doctor: Sounds unlikely.

Of these, only the last is something that is likely going to be “dismissed as psychological”. The “finding of fibers on the skin” is not going to be dismissed as psychological, since fibers are everywhere, and everyone has them on their skin.

The root symptoms for many people who identify as having Morgellons are itching and crawling sensations. This causes people to scratch and pick at their skin, hence producing sores. The itching causes sleep deprivation, which might lead to fatigue and confusion.

So, under what circumstances would a doctor dismiss itching as “purely psychological”? Suppose you went to the doctor, and told him: “Doctor, I’m itching really bad, feels like bugs crawling under my skin”. How quickly would the doctor say “you are just imagining it”?

Consider for a second all the causes of itching, if we go to http://www.wrongdiagnosis.com/symptoms/itching_skin/causes.htm, you’ll see there are 646 disease that have itching as a symptom. Not only that, but there are 1742 medications that cause itching skin. Given this vast array of possible causes, obviously a doctor is not going to dismiss every report of itching as being “purely psychological”.

But here our patent said “it feels like bugs crawling under my skin”. Would a doctor automatically dismiss this? No. This sensation is generally either an actual infestation of bugs, like scabies, or it’s “formication“, which is a well known symptom of many physical conditions including diabetes and menopause.

So what would the doctor dismiss as purely psychological? Well, suppose the patient had actually said “I think I’ve got bugs crawling under my skin”. The doctor would look at their skin, and if there were no scabies they would explain that this is formication, and then go on to look for possible causes. At this stage there is no dismissing.

Suppose that no scabies are found, formication is explained, and the patient still continues to say “I believe I have bugs under my skin”, then at this stage, the doctor might begin to suspect that the patient is delusional.

So what is the doctor actually dismissing? They are dismissing the delusion as purely psychological. The thing that is psychological is the fixed false belief that their crawling and biting sensations are caused by parasites under their skin. This does not mean that the crawling and biting sensations are psychological.

That’s important, so I’m going to repeat it.

Just because a patient holds a false belief regarding the cause their itching, biting and crawling sensations, this does not mean their itching biting and crawling sensations are “purely psychological”. The only thing that is in any sense “purely psychological” is their false belief about the cause of those sensations.

If I have headaches, but I attribute those headaches to FBI mind control rays, then this does not mean that my headaches are purely psychological. It just means I hold a delusional belief about the cause of those headaches.

So, yes, delusions are psychological. If a patient thinks that living fibers are burrowing into his eyeballs, then that’s probably psychological. But even here, doctors do not “dismiss”. A delusion can be quite a serious problem. It’s hardly something to brush aside. But at the same time, it’s very difficult to discuss with the patient. For the patient, if you question their delusion, you are questioning the whole basis of their illness. To these patients, it might feel like you are “dismissing their symptoms as psychological”, when in fact you are simply noting that they have one delusional belief regarding their real physical symptoms.

The MRF and the OSU-CHS-CIMD exist to raise public awareness of Morgellons and to raise funds. So it suits their purposes to claim that patients are having their physical symptoms dismissed. But it’s ultimately disingenuous, as doctors do NOT dismiss physical symptoms. They don’t even dismiss psychological symptoms. But some patients hold delusional beliefs regarding the causes of their physical symptoms. They then claim that, since the doctor tried to explain that this was a delusion (and perhaps treat it), then their physical symptoms were being dismissed as psychological.

In reality, the only symptoms that were being “dismissed” as psychological, were the psychological symptoms.

 

In their recent paper, Stricker and Savely said:

“[...] the apparent response to antibiotic therapy supports the concept that Morgellons disease may be triggered by an infectious process”

Morgellons is not a recognized disease, it’s a list of symptoms. Some people have self-diagnosed with some those symptoms, and some doctors (a very small number) think that this means that the list of symptoms is indicative of a distinct disease. The above statement is typical of the reasoning they use.

So if “Morgellons” is not a distinct disease caused by an infectious agent, then why would antibiotics help people who have some of this list of symptoms? Let’s look at the symptoms again, from the above paper:

# Skin lesions accompanied by intense itching
# Crawling sensations on and under the skin, often compared to insects moving, stinging or biting (cutaneous dysesthesia)
# Fibers, which can be white, blue, red or black, in and on the lesions
# Fatigue significant enough to interfere with daily activity
# Musculoskeletal pain
# Inability to concentrate and difficulty with short-term memory
# Behavioral changes

Fibers, we have dealt with before. Nobody has shown they are anything other than normal environmental contaminants (hair, lint, clothing fibers, paper fibers). After five years of looking at them, it seems fairly clear that this is all they are. No new evidence is presented, so let’s look at the other symptoms.

Musculoskeletal pain, intense itching and crawling sensations are obviously going to seriously interfere with your sleep (disrupted sleep is another commonly listed Morgellons symptom). Sleep deprivation leads to fatigue, difficultly concentrating, and behavioral changes. Sleep deprivation can cause other problems, even leading to diabetes.

So what we might have is people with intense itching and crawling sensations, and other pain, that keeps them awake at night, so they develop “brain fog”.

So where do antibiotics fit in?

Well, for one things, the cause of the itching/crawling might in fact be an infection such as staph or folliculitis, which is treated by antibiotics. But an often overlooked property of many antibiotics is that they are also anti-inflammatory. They can also, apparently, “Inhibit Staphylococcal Exotoxin-Induced Cytokines and Chemokines“, which is interesting since the MRF states that elevated cytokines is a common laboratory abnormality for Morgellons. If they hence judge reduced cytokines to be an indicator that antibiotics are addressing an infectious source of “Morgellons”, then they might be jumping to conclusions.

The point here is that it is entirely possible the antibiotics provide purely symptomatic relief to people who have some of the symptoms on the Morgellons list. Morgellons patients and Morgellons doctors almost invariably note that the relief ends when the antibiotic treatment stops. What if these extreme doses of antibiotics are not actually addressing some underlying infectious agent, but instead are simply suppressing the symptoms via their mild anti-inflammatory effects? If this is so, then those doctors provide their patients a grave disservice.

 

nosology \nō-ˈsä-lə-jē, -ˈzä-\ noun, probably from New Latin nosologia, from Greek nosos disease + New Latin -logia -logy. circa 1721

 

1 : a classification or list of diseases

2 : a branch of medical science that deals with classification of diseases

In any discussion, particularly in science, the defining of terms is vital to progress. If you think a term means one thing, and someone else thinks it means something else, then unless you address this difference, you are not going to come to any meaningful agreement.

This problem is particularly apparent in the phenomenon of “Morgellons“. There are two particular terms that cause problems. The first is, obviously, “Morgellons” itself, and the second is “Delusional Parasitosis” (DP). The confusion between these terms has led to the doubly misunderstood (and hence incorrect) statement that “Morgellons is DP”. Morgellons is not DP.

For a doctor, “Morgellons” is a list of symptoms. Itching, lesions, finding fibers, fatigue, confusion and a few others. It’s a rather broad list, and various people define it slightly differently, and the extent to which you have to have all the symptoms varies. Stricker and Savely say you can have Morgellons without finding fibers. Most doctors don’t think that this list of symptoms really defines a new disease, and the conditions of people who self-diagnose with Morgellons is rather better explained by existing diseases.

For the patient however, “Morgellons” is “the disease that is causing my problems”. So if they hear someone say “Morgellons is not real”, it’s like someone said “your problems are not real”. The patient will quite understandably get very angry when someone tells them that their problems are not real, because their problems ARE real.

This is compounded when people talk about DP. The definition of DP will vary based on who you ask. Some people say that if there is a physical condition underlying your false belief in parasites, then that’s NOT DP. DP, they will say, is present when:

The patients have no obvious cognitive impairment, and abnormal organic factors are absent. True infestations and primary systemic diseases that cause pruritus are not involved. Primary skin lesions are not present.

In other words, if the patient has something wrong with them, such as diabetes, or if their formication is caused by a physical condition such as menopause, then they can’t have DP. If they have obvious cognitive impairment, then they can’t have DP either. If they have a skin condition like eczema, or folliculitis, then they can’t have DP.

This restrictive definition of DP allows proponents of Morgellons to say not only that “Morgellons is not DP”, but “people with Morgellons cannot have DP”, since DP is a purely psychiatric condition with one mental symptom, and Morgellons includes both additional physical symptoms (fatigue, tooth loss, etc) , and additional mental symptoms (brain fog, confusion, etc.)

The problem here is not with the Morgellons community, they are actually using definitions of DP to come up with a logically consistent conclusion. The problem here is with the dermatology community for both their broad statements like: “Morgellons is DP” and their simultaneously conflicting statements like: “DP is a single symptom mental illness”. Neither of these statement is correct.

The reality is that Morgellons is a list of symptoms of unknown statistical significance, and DP is the unshakable false belief that one is infested by parasites, and comes in primary, secondary functional, and secondary organic forms.

Dermatologists, of course, appreciate the complexity of the situation, but they do not seem to be communicating it very well. They would make their jobs a lot easier if they made a little effort to communicate these distinctions, both to their patients, and to the media.

 

The CDC Investigation page on “Unexplained Dermopathy” (Morgellons) was updated on Nov 1, the relevant changes were:

old:

As part of CDC’s ongoing process to identify potential sites for the epidemiologic investigation, in July 2007 CDC published a solicitation notice about CDC’s planned investigation of this unexplained dermopathy in Federal Business Opportunities. In the notice, CDC announced that it may award a contract to Kaiser Permanente Northern California to assist the government in conducting the investigation. The notice also served to solicit the services of other organizations that may be capable of doing tasks related to the investigation, as specified in the notice. CDC will award a contract to the vendor that is identified during the solicitation process.

new

To learn more about this condition, the CDC is conducting an epidemiologic investigation. The CDC has awarded a contract to Kaiser Permanente in Northern California to assist the CDC in the investigation of this condition. The investigation will begin after review and approval of the scientific protocol by the CDC and the Kaiser Permanente institutional review boards (IRBs). IRBs have an important role in the protection of the rights and welfare of all research participants.

old:

When does CDC plan to begin the investigation?

The investigation will begin once the contract is awarded to the vendor that is selected. CDC will begin work with the qualified vendor immediately to identify and evaluate patients who are eligible to participate in the planned investigation

new:

When does CDC plan to begin the investigation?

The investigation will begin after review and approval of the scientific protocol by the CDC and the Kaiser Permanente institutional review boards (IRBs). IRBs have an important role in the protection of the rights and welfare of all research participants.

So, as expected, Kaiser was awarded the contract (there were no other possible candidates, based on the FBO specification). However the interesting news is that BOTH the CDC and Kaiser still have to sign off on IRB approval of the scientific protocol. IRB Clearance was originally scheduled for October 30th. I doubt this means much besides laggardness, but I’d be very interested in hearing just how they are going to organize a patient cohort of “persons who have reported themselves as having this unexplained skin condition” without any additional criteria.

© 2012 Morgellons Watch Suffusion theme by Sayontan Sinha