Jan 162008
 

With the current media attention due to the CDC announcement and press conference (transcript here), this is a good time to recap what is known about Morgellons, specifically the many misconceptions.

The CDC is investigating not because the evidence indicates that there is something going on, but rather because of the intense political pressure and media campaigns orchestrated by the Morgellons Research Foundation. This is very unusual. Psychologytoday.com says:

The [Morgellons] debate has grown so heated that the federal Centers for Disease Control and Prevention got involved, and not because they wanted to. They were inundated with calls from irate people who say they have this disorder and want answers. “More typically we get a very credible indication of an emerging problem from an official source,” says Dan Rutz, spokesperson for the CDC. “This was driven by lay people and some clinicians who are frustrated and not sure what to do with these folks.”

The “lesions” on Morgellons patients look exactly like the lesions on patients with Neurotic Excoriations. i.e., they look like they are self inflicted. Many Morgellons patients confess to “picking” their lesions to get the “morgs” out, and to obsessive scratching. I was rather surprised so see Dr. Joe Selby of Kaiser point to the photo on the left (below) and say: “They don’t look like any recognized skin rash” (on ABC7). When there is a very well documented condition that produces an IDENTICAL “rash” (see the photo on the right, or click here for more). Several of the photos that ABC7 used to illustrate “Morgellons” are actually lifted directly from the second dermnet.com page on neurotic excoriations.

w0305-bck-compare.jpg

Update: Dr Selby clarified his remarks via email:

What I’d meant to say was that the lesions don’t look like a characteristic rash other than self-inflicted lesions. We’d been speaking off camera about shingles and other characteristic, recognizable lesions. These do look like neurotic excoriations. [this does not imply] that I think these are simply neurotic excoriations. An ultimate purpose of our research is to determine whether there is reason to suspect that they are something other than or in addition to neurotic excoriations.

There are lots of cases in California because there has been a lot of sensational local media coverage in California.

The sensation of things crawling on and under your skin is a common medical symptom known as formication. It’s a symptom of hundreds of medical conditions, ranging from menopause and diabetes, to the side effects of many prescription drugs such as ritalin. Having this sensation does not mean someone is crazy. It’s just a symptom.

The fibers that people report finding are typically very small, a fraction of an inch long. Visually they appear very much like common household lint. Run your finger across the top of your monitor – that’s the type of stuff. While people claim it emerges from their skin, nobody in the last five years has produced any evidence that this happens. Not one simple study. Not one photo. Nothing. Just a lot of anecdotal evidence – usually by the patient. This photo is of my laundry lint.


The photos that people post online are just normal stuff under a cheap microscope. I took a lot of similar photos to demonstrate this. Feel free to use them for any purpose.
http://picasaweb.google.com/morgellonswatch/NotMorgellons

Other than the fibers, which you find on your skin when you look, even if you don’t have Morgellons, the list of symptoms attributed to Morgellons is very long and poorly specified and is shared by several other conditions, including Menopause.

It’s not a battle between “a real disease” and “just a delusion”. The real question is if all these people have something in common, or if they all have their own specific medical problems, and have just self-diagnosed with Morgellons because their doctors have been unable to cure them. Even if some are delusional, doctors don’t “dismiss” them. Delusions that affect your health are very serious, just as serious as physical illness. Frequently, however, delusions are simply a component in a more complex medical condition. See secondary organic delusional parasitosis for example.

Dec 132007
 

The Morgellons Research Foundation has said many times that cellulose has been detected in fibers that Morgellons patients found on the skin, or in their wounds. They are also quite interested in tests that showed Agrobacterium in wounds. (Agrobacterium is a bacterium that normally infects plants, but can infect humans with weakened immune systems, particularly with chronic skin trauma).

Agrobacterium is one of number of species that produce microbial cellulose. Of course this is of interest, since some fibers tested have been shown to contain cellulose. Could those fibers be microbial cellulose from Agrobacterium?

Recently some SEM photos were released that showed “Morgellons” fibers. I demonstrated that they looked just like cotton fibers, which are also made of cellulose. But could they actually be microbial cellulose? Here’s the photo of the Morgellons fibers:

new_pa3-1.jpg

Note the scale in the bottom left, 10µm, meaning the smooth fibers are about 10-15µm across.

Now look at some microbial cellulose:

microbialcellulosestructure.jpg

At first glance it looks plausible that it might be the same thing. But look at the scale in the bottom right (click on the photo to zoom in). It’s 2µm, meaning the microbial cellulose fibers are about 0.1µm across. 1/100th the size of the Morgellons fibers. Here’s what the microbial cellulose fibers would look like at the same scale as the Morgellons fibers.

ag_on_cotton.jpg

So, no, these “Morgellons” fibers do not in any way resemble microbial cellulose from Agrobactrium. In fact, they look exactly like cotton. They are made of the same thing as cotton. Cotton is in nearly all bandages and dressings, towels, clothes, furniture and household dust. Cotton fibers are everywhere. These “Morgellons” fibers are clearly cotton.

But one mystery remains – why are the “Morgellons” patients’ samples testing positive for Agrobacterium? That’s difficult to say for sure, but consider that the samples came from patients of Raphael Stricker, who treats some people that he thinks have Morgellons with very long term intravenous antibiotics – which are often administered via an indwelling venous catheter (meaning a catheter into a vein, that you leave in all the time). Consider this report:

http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&uid=8448285&cmd=showdetailview

Agrobacterium infections in humans: experience at one hospital and review.
Agrobacteria are noted primarily for their phytopathogenicity [infecting plants] and when isolated from human clinical specimens are often considered contaminants or organisms of low pathogenicity [infecting humans]. We report six cases at one hospital over a 6 1/2-year period in which infection was accompanied by a compatible clinical syndrome and review 19 cases reported in the literature. Fourteen of the 25 combined cases involved central venous catheter-associated infections. Six cases involved peritonitis, five of which occurred in patients undergoing continuous ambulatory peritoneal dialysis. Additional infections included two non-catheter-associated bacteremias, one prosthetic valve endocarditis, and two urinary tract infections. Most infections were community acquired, and restriction enzyme analysis of Agrobacterium isolates from eight patients at one hospital revealed unique patterns in each case without evidence for clonal dissemination of these strains. Agrobacterium isolates may be resistant to multiple antibiotics, and optimal therapy has not yet been determined. Agrobacteria should be recognized as opportunistic pathogens in the immunocompromised host, particularly in those with indwelling plastic catheters.

So, several sick patients from Stricker’s patient community, who probably had indwelling plastic catheters, tested positive for Agrobacterium, and found cotton in their wounds.

Dec 122007
 

There are some new photos on the MRF web site, including this one:

new_pa3-1.jpg

Which is captioned: “Ribbon-like fiber coated with minerals with a cylindrical fiber and faceted fiber adjacent“, with the implication being that this is some unusual fiber only found in Morgellons patients. But let me set this photo in a larger context:

combined-cotton2.jpg

I’ve taken the MRF photo and scaled it to the exact same scale as another (larger) photo. I’ve also taken two more photos and overlaid them to show detail of the “mineral” coated fiber. One image is just to the right of the middle, and the other is in the left. Note all I did here was rotate the images and moved them to similar regions. The images have been scaled to match (note the 100µm and the 10×10µm scales). Note the undamaged fibers are the exact same size, shape and texture in both photos, while the middle damaged fiber almost exactly matches the overlaid segments of damaged fiber.

All images are of cotton. The larger background image is of cotton thread, from here, the second inset image is of a water-damaged cotton fiber from here. Click on the above photo to zoom in and examine the cotton more closely. Note that they have the exact same “minerals” sprinkled over them. And not that the damaged fiber shows damage in the same way as the “Morgellons” fiber. Also the “faceted” fiber could quite possibly be a faceted fiber, like extruded polyester, but could equally well be a slightly twisted cotton fiber, such as those in the lower right.

Hence, the most likely explanation is that these are cotton, from any of: cotton bandages, cotton wool or cotton clothing.

Original images are linked below, click them to see full versions:

jaic40-02-002-ch2fg6.jpg jaic40-02-002-ch2fg4.jpguwbl-0412-w.jpg

Sources:

http://www.aber.ac.uk/bioimage/image/image.htm

http://aic.stanford.edu/jaic/articles/jaic40-02-002.html

Nov 212007
 

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.

Nov 182007
 

“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.

Nov 092007
 

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.

Nov 082007
 

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.

Nov 032007
 

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.

Oct 302007
 

Virginia R Savely and Raphael B StrickerThere’s a new article on Morgellons by Savely and Stricker – the authors of the original Morgellons paper, and proponents of long-term antibiotics for both late stage Lyme and “Morgellons”

Expert Review of Dermatology
October 2007, Vol. 2, No. 5, Pages 585-591

Morgellons disease: the mystery unfolds
Virginia R Savely and Raphael B Stricker

http://www.future-drugs.com/doi/abs/10.1586/17469872.2.5.585

Abstract:

Morgellons disease is a mysterious skin disorder that was first described over 300 years ago. The disease is characterized by fiber-like strands extruding from the skin in association with dermatologic and neuropsychiatric signs and symptoms. Although Morgellons disease has been confused with delusional parasitosis, the occurrence of the disease in children, the lack of pre-existing psychopathology in most patients and the presence of subcutaneous fibers on skin biopsy indicate that the disease has a somatic origin. The association with Lyme disease and the apparent response to antibiotic therapy supports the concept that Morgellons disease may be triggered by an infectious process. Recent studies suggest that infection with Agrobacterium may play a role in the disease. Further clinical and molecular research is needed to unlock the mystery of Morgellons disease.

The full article was posted to various Morgellons mailing lists, and is available here:

http://nielsmayer.com/morgellons07.pdf

Overall the paper is very disappointing. There is very little (if anything) in the way of new information. It seems very much a re-working of the old paper, with some additions of various things that have already been mentioned in the popular press. There is no new science. No real studies, and nothing in the way of case studies.

Here I’ll focus on the more obvious (and sometime imponderable) flaws.

The disease was first described in French children in 1674 by a British physician, Sir Thomas Browne

No, it was not. A totally different disease with the same name was described. Browne writes about a local disease of children characterized by coughs and convulsions that is capped by “harsh hairs on the back”. There is nothing to suggest any link, and the MRF does not claim one.

In 1682, Dr Michel Ettmuller’s microscopic drawings of objects associated with what was then believed to be a worm infestation of children (Figure 1) appear similar to microscopic views of fibers from present-day sufferers of this disease

No, they don’t. Mites E are scabies mites, B is some kind of insect larvae (mosquito maybe) C and D are just some other mites, or perhaps a fuzzball from clothing. Fibers look like fibers, especially 300 years ago. There is no connection here.

Morgellons disease was rediscovered in 2001 by a Pennsylvania housewife, Mary Leitao

Maybe they should have checked with her first. She’s said all along that this was just a label, and nothing to do with the original “Morgellons”.

Morgellons disease was initially considered to be a form of delusional parasitosis (DP) by most dermatologists [3–11]. However, as the disease has become more widely recognized, significant clinical differences from DP have become apparent (as discussed later) [12,13,102]. The recent discovery of a putative infectious cause of the disease supports a somatic etiology of this bizarre skin condition.

Dermatologists options have not changed, and they are not as simple as suggested here. If there is something wrong with a patient’s skin, then it’s not DP. Delusions might play a part, but people can have skin problems, and also have delusions at the same time.

A network of blue, red, white and black fibers under the skin of these patients as well as blue, black and white fibers protruding from the lesions can be visualized using a 30× hand-held digital microscope [...] The fiber-like material can be observed in skin lesions as either single strands or what appear to be balls of fibrous material that may demonstrate autofluorescence (Figure 4) [1]. Patients frequently describe this material as ‘fibers’, ‘fiber balls’ or ‘fuzz balls’.

Here note they are trotting out the same descriptions that have been going around for years. Red, white, blue and black fibers on and under the skin, and fuzz balls. This is the crux of the matter here. What could these fibers be? After several years nobody has been able to identify any fibers EXCEPT those fibers which were clothing fibers.

Typically, patients have sought help from 10–40 physicians who often make a diagnosis of DP without a thorough examination and interpret the obvious open sores on the patient’s skin as attempts at self-mutilation

Now this might hold some weight if they had a cohort of patients that they could actually demonstrate had some skin problems that 10-40 doctors had simply dismissed. Unfortunately they are unable to do this. If there are over 10,000 patients, then that’s around 200,000 times that doctors had “dismissed” the lesions as self-inflicted. A better word might be “diagnosed”. 200,000 diagnoses, and all 200,000 wrong? Clearly not. In fact, this large number of similar diagnoses seems to suggest that the diagnoses is correct. If you go to 20 doctors, and they all tell you the same thing, then does this make it more or less likely that your self-diagnosis is correct?

We currently follow more than 200 Morgellons patients in our practice in San Francisco.

So they diagnose Morgellons. And treat it.

The male to female ratio is approximately 1:1 according to the Morgellons Research Foundation. The disease affects all age groups including children, but the prevalence in children is unknown at present. There is often a history of traumatic exposure to plants, dirt or soil, such as gardening, landscaping, farming, camping or other outdoor activities. The association with plant exposure has implications for the etiology of the disease (as discussed later).

This is getting silly. Who has not had “a traumatic exposure to plants, dirt of soil” in the last ten years? Scuffed a knee? Grazed a knuckle? Potted a plant? What was the questionnaire question for this? It’s not mentioned on the MRF survey. What is the sample size?

It appears that skin lesions and fibers may not be present in all individuals with this disease, since family members of patients often report similar systemic symptoms without skin lesions

Brilliant, you don’t even need lesions or fibers to have Morgellons. So what, then, is the case definition for? If you just had the symptoms of Menopause, you would qualify for Morgellons. If you were simply getting old, you could quite easily diagnose yourself with it.

Patients have reported symptoms of this disease in their pets [1]. The majority of reports involve dogs, but cats appear to be increasingly affected. Skin lesions fitting the description of Morgellons disease have also been reported in horses, and horse owners have observed fibers associated with skin lesions on their animals by using a lighted 30× hand-held microscope [1].

What are we to make of this? Dogs and cats? Horses? Reported by the patients? This is getting ludicrous.

Skin biopsies of patients typically reveal nonspecific pathology, or an inflammatory process with no observable pathogens [1]. Several biopsies have shown fibrous material projecting from inflamed epidermal tissue. Often the biopsies are reported to contain ‘textile fibers’ located in the dermal region rather than being adherent to the skin. How these fibers arrive at a subcutaneous location remains unexplained.

This is called an “argument from ignorance” – we can’t figure out how those fibers got there, so it much be some freaky bacteria! A more sensible approach would be to first question these reports. How many, and from whom? Then you might consider the thousand ways that fibers MIGHT get under unbroken skin. Start with light neurotic excoriations which healed over. Then perhaps consider fibers inside follicles. Anyway, you do the math.

Recent studies indicate that Morgellons fibers are resistant to chemical solubilization and heating, making analysis difficult by conventional means [...] There is preliminary information that some Morgellons fibers are made of cellulose, but this information has neither been formally evaluated nor confirmed

So which is it? Resistant to heating, or cellulose? There’s also studies that indicate they are wool and cotton. How do you pick which study to choose? Simply the one the fits your facts best. Better be careful and not pick too many.

In a preliminary study, skin biopsies from Morgellons patients revealed evidence of infection with Agrobacterium, which causes crown gall disease in plants [20]

[20] here is “Stricker‌ RB, Savely VR, Zaltsman A, Citovsky V. Contribution of Agrobacterium to Morgellons disease. J. Invest. Med. 55, S123 (2007). • First description of Agrobacterium in Morgellons patients.” What happened here was Stricker sent Citovsky TWO samples from sick patients with open sores on their skin. Citovsky tested them, and also six samples from health patients with nothing wrong with their skin. The sick patients with skin problems were found to test positive for Agrobacterium. The healthy patients did not.

That’s it. Samples of dubious origin with no appropriate control group, in a statistically meaningless amount. At best it suggests that people who have constant open lesions on their skin due to neurotic excoriations tend to have agrobacterium in the tissue around those lesions. Possibly due to dirt under fingernails. If you itch, you will scratch, if scratch for years then it’s not at all unlikely you would scratch some dirt into your skin.

We then get to “differential diagnosis”, where they purport to show that “Morgellons” cannot be Delusional Parasitosis (DP), Drug induced formication, Scabies, tropical dermatoses (Harvey’s theory) or perforating dermatoses. These arguments seem to be neat little tautologies, which I’ll summarize for flavor:

  • Morgellons cannot be DP because the patients were not delusional before they got Morgellons.
  • Morgellons cannot be drug induced formication, because the patients don’t take drugs.
  • Morgellons cannot be tropical dermatoses, because the patient has not been to the tropics.
  • Morgellons cannot be perforating dermatoses because the patients don’t have the genes or the symptoms

The reasoning here is either irrelevant or wrong. Nobody is making any claim that “Morgellons is X”, so demonstrating that “Morgellons” is not filarial worms does not make any real statement about the population of people who have self-diagnosed with Morgellons. Since the most likely explanation for “Morgellons” is that it is a random mixture of physical and mental conditions, varying by individual, that the sufferer’s have self-diagnosed as Morgellons, then you will ALWAYS be able to find many in that group about whom you can say “they do not have X, so Morgellons is not X”. Contrariwise, you can always find some who actually DO have X, but this also does not mean that “Morgellons is X”, it just means X explains the symptoms for that particular patient.

Take “Drug-induced formication”. Some people who think they have Morgellons actually DO have drug-induced formication. It’s not clear how many, but that’s a bit a of straw man, because formication is a symptom of a HUGE range of conditions, including menopause. Of course Savely and Stricker could say “Morgellons is not Menopause, because some of the patients are men”. But that’s just as disingenuous as their other differentials. Some people who have self-diagnosed with Morgellons MUST have menopause-related formication. It’s a statistical certainty. And given that there are around a million regular meth users in the US, it’s almost certain that some of them have drug-induced formication. If you take into account the users of Ritalin, Adderall and Lunesta (all of which have formication as a side effect), then the proportion is much higher.

Then saying that Morgellons is not onchocerciasis because “tropical travel and eosinophilia are not commonly reported in Morgellons patients” is almost funny. Funny because it’s quite true. Funny because it’s the theory that the MRF are about to promote. And funny because it’s the kind of reasoning that Stricker derided the CDC and the IDSA for when they say it’s unlikely that you have Lyme disease if you don’t live in a region where it is endemic, or if your tests come back negative.

It is unfortunate that this paper will be taken seriously when it really boils down to “We don’t know what these people have, but we think that large quantities of antibiotics help some, and doctors should be more open minded.” The publication of this paper will only perpetuate the misunderstandings regarding Morgellons and further drive vulnerable patients into the clutches of quacks and charlatans.

Oct 102007
 

The name “Morgellons” was first used by Mary Leitao, the founder of the Morgellons Research Foundation, and for a long time the story of Morgellons has been underpinned on the story of her son, on whose lip she found a few fibers, and from this extrapolated a new disease. Other people with various problems looked and found fibers (since fibers are everywhere, if you get a microscope, you’ll find fibers), Leitao identified with the problems these people had in dealing with their doctors, and the MRF was born.

Recently the MRF has been undergoing some changes. A month ago a number of outlandish speculations were scattered over the MRF’s web site, and then the next day they were first toned down, and then removed. The writings were the work of William Harvey.

Then yesterday the web site was updated for the first time since those changes, and included a new page on financial info. There was a new newsletter, discussing how they were shifting from raising awareness, to raising funds. There was a new address for sending contributions, changing from a PO box in Pittsburgh, PA (Leitao), to one near Albany, NY.

But, perhaps most interesting is that the story of how it started has been removed from from the front page and the FAQ.

Deleted From the Front Page

The name, Morgellons disease, was used as a temporary label by the mother of a two-year-old boy who developed symptoms of this disease in 2001. In 2002, after establishing the MRF in honor of her child, this mother was contacted by people in all 50 states and across the globe who reported symptoms of this disease.

Deleted from the FAQ:

Why was the Morgellons Research Foundation established?

The Morgellons Research Foundation (MRF) was founded by the mother of a two-year old child with an unknown illness. When unable to find the proper help for her child, she labeled his illness “Morgellons disease” and established the MRF to raise awareness of the disease and funds for research.

Why is this? Why start to downplay the “Patient Zero”, the first person identified as having “Morgellons”, someone who is mentioned in practically every media story on Morgellons? I suspect the reason is that he simply does not fit with Harvey’s new theory. Harvey is getting ready to publish some speculation based on specious statistical analysis and some isolated observations, and “Patient Zero” simply does not fit into his new theory, so he’s getting rid of him.