Medical Professional

Itching is not delusional

There’s a key pararagraph in Brigid Schulte’s excellent Washington Post article on Morgellons:

At the Mayo Clinic in Rochester, Minn., doctors are beginning to discover how imprecise a diagnosis of “delusions of parasitosis” can be. In the past five years, 175 people have been admitted to the clinic with that diagnosis. After thorough evaluations, however, with doctors taking the time to search for underlying problems, only half of those patients left the clinic with that diagnosis intact. Doctors found a very real cause of the itching in the other half.

It’s key both because it illustrates the false dichotomy of “disease or delusion” that the media and the MRF have forced upon Morgellons, and because it offers a way out of this dead end debate.

Let’s say somebody itches. That’s all, they just itch, but really badly, so it’s a problem. They go to the doctor, and the doctor does a lot of tests to try to find out why they are itching. They do all kinds of tests, and discuss possible environmental causes with the patient, they keep at this for a long time but they can’t find out why the patient is itching.

Is the patient delusional?

No. Clearly not. They are just itching, and they can’t find out why. Now, this obviously would be a horrible situation to be in. Painful itching, and no solution in sight. Horrible. But just because the doctor can’t find a cause for their itching, it does not mean they are delusional.

Now consider the 175 people mentioned above. They were diagnosed with delusions of parasitosis, but after doctors looked for underlying problems, only half of them retained that diagnosis. Consider what this means.

For someone to be diagnosed with delusions of parasitosis (DOP), they have to have an unshakable false belief that they are infested with parasites. Now our hypothetical itching patient does not have this belief, they just itch, so they would not be diagnosed as delusional, since they hold no strange beliefs about their itching. No, to have itching and be diagnosed with DOP, you need TWO things:

Itching
Delusions of Parasitosis

Of course, one cause of itching is scratching (the itch-scratch-itch cycle), and one cause of scratching is DOP. But that’s just one cause. Just because someone has DOP does not mean that their itching is caused by their DOP. There are hundreds of causes of itching. Lots of non-delusional people have itching for which no cause can be found.

DOP, on the other hand, can certainly be caused by itching. It’s called secondary organic DOP.

Now, of the Mayo’s 175 people, 88 of them had a cause found for their itching, presumably this was addressed, and their itching was reduced (or at least explained), and so those people saw conclusively why they were itching in the first place, and were either cured of it, or no longer had false beliefs about it. Were they misdiagnosed? Not if they started out with fixed false beliefs about the cause of their itching. They were not misdiagnosed, they were cured.

Itching is not a delusion. Itching is a physical sensation. Formication is a physical sensation. A delusion is a fixed false belief. Saying someone is delusional does not in any way invalidate their itching. They still itch. It still could be caused by any of hundreds of illnesses, physical conditions or environmental factors. The fact that they hold some odd beliefs about it does not mean they don’t actually itch.

So, no, there is no evidence that Morgellons is a distinct disease, and no, the fibers are nothing to do with anything. But just because someone thinks they have Morgellons does not automatically mean they are crazy. They itch, they suffer from formication, they scratch. In many cases there are probably reasons behind this besides “delusions”.

Why do Antibiotics help with Morgellons?

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.

November 9, 2007 by Mick West Medical Professional Science

Morgellons disease: the mystery unfolds

There’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.

October 30, 2007 by Mick West Medical Professional Quackery Science

Antibiotics

Suppose you have 10,000 people who have self-diagnosed themselves with a mysterious disease that causes horrible itching, and makes you think fibers are emerging from your body. In many cases they have been diagnosed as delusional, and have been unable to work with their doctors in finding effective treatments. These people have very frustrated, and angry at the medical system.

Suppose then an organization comes along, and tells them that they are absolutely not delusional, and they actually have a “newly emerging infectious disease“, and if they are “given appropriate antibiotics long enough” it will “resolve most symptoms“. and that “the treatment presently most successful is antibiotics.”

Two members of this organization even run a clinic to sell these antibiotics for “long enough“, but their services are very expensive, and these two people are just about the only people in the country who sell this treatment, so most of the sick people either can’t afford it, or can’t travel to see them, so these two only sell their treatment to perhaps 200 people out of the 10,000 who self-diagnose.

So what are the other 9,800 going to do? Many of these people were diagnosed as delusional (in addition to whatever other physical symptoms they have), they then self-diagnosed as having “Morgellons”, after reading about it on the internet. They then read on the internet that “Morgellons” can be effectively treated with antibiotics.

So it’s quite obvious what self-diagnosing people are going to do. They are going to self-treat. They are going to buy antibiotics, and they are going to take them. They are most likely going to harm their health in the process.

Sure, antibiotics are prescription only, and with good reason. But creative minds can find them on the internet, or other places. Take this recent thread titled “how do u get antibiotics for so long“. Some of the answers were:

Find a MD to prescribe tetracycline for “ROSEA” then you can get on it long term.
Most women have it. The MD would not prescribe ATB’s for me for LYME or Morgellons,
but said, OK, you have Rosea and I can do it for that.

Also, from mexico, I order Flagyl (NAME BRAND) which fights protozoa and used in ob/gyn settings for chlymadia. Tetracycline and Flagyl [Metronidazole] work together and compliment each other.
——————————————-
medsmex.com
——————————————-
Here are a couple of more sites for antibiotics without a script:
http://www.aclepsa.com/
http://www.drugdelivery.ca/
I have ordered from both places, you should just do a search for the type of antibiotic you are looking for, there are a bunch I found on Google.
——————————————-
I talked my old doctor into prescribing doxycycline for two years based upon Dr. Garth Nicholsons treatment for CFS, I have FMS. I took it for 1 year 9 months. If helped a lot but hard on stomach. All my symptoms are back.
——————————————–

and in another thread:

I haven’t tried [Tetracycline ] but I know I can get it at the Feed Store (morgellons pharmacy)

Note that the “Feed Store”is referred to as the “Morgellons Pharmacy”, because you can buy antibiotics at the feed store that are intended for livestock. This is something that is well known in the chronic Lyme community, and has hence been transferred over to the Morgellons community. Anti-parasite drugs such as ivermectin can also be found at the local feed store, and are also consumed by people who think they have Morgellons. You can buy some antibiotics (like Ampicillin, sold as “Fish Cillin”) at the pet store in the mall. You can even get these antibiotics on Amazon.com, see also: “Fish Cycline” (Tetracycline), “Fish Zole” (Metronidazole) and several other types of “Fish” antibiotics. Read the comments, nobody seems to be buying it for fish (or birds, if you want Sulfamethoxazole)

So what you have here is a lot of sick people who do not know what is wrong with them, who have somehow self-diagnosed themselves with a disease that practically no doctor thinks is real, and then are self treating themselves with a treatment that almost no doctor would recommend. They find ways to buy these drugs, either from Canada or Mexico, or they take antibiotics nominally labeled for fish.

It’s a major public health problem. Self-diagnosis and self-treatment (for months) with antibiotics for these 10,000 people means:

1) Their actual conditions, physical and/or mental, are going untreated
2) They will suffer from side effects from the antibiotics, possibly serious, which will add to their sickness, further complicating correct diagnosis, as they are taking these antibiotics covertly.
3) They increase their risk of developing antibiotic resistant infections, such as MRSA, and contribute to the overall growth of these “superbugs”.

Sadly the Morgellons Research Foundation, the New Morgellons Order, and Oklahoma State University are greatly contributing to this problem by promoting antibiotics as a treatment, before anyone has even discovered a disease.

CDC vs. OSU

The CDC today released a “Request for Quotations” for their Morgellons investigation, which is basically a formality, as the only entity they would qualify to do the work is Kaiser. They also listed the lab tests that would be done (basically all the standard systemic tests).

http://www.fbo.gov/spg/HHS/CDCP/PGOA/Reference%2DNumber%2D2007%2DMorgellons/Attachments.html

They give a list of the work to be done:

2.1. Describe the clinical and epidemiologic features of persons who have reported themselves as having this unexplained skin condition, including assessing the frequency of co-morbid conditions (e.g., neurocognitive deficits, neurologic conditions, major psychiatric disorders).
2.2. Collect information to generate hypotheses about possible risk factors for this condition.
2.3. Assess the histopathologic features of the skin condition based on skin biopsies from a sample of affected patients.
2.4. Characterize fibers or threads obtained from patients with the condition to determine their potential etiology.
2.5. Describe the geographic distribution and estimate rates of illness.
2.6. Describe health care utilization among persons with the condition.

And a timeline:

4.1. IRB [Independent Review Board] Clearance October 30, 2007
4.2. Database of potential cases (study cohort) November 30, 2007
4.3. Database containing all results of clinical evaluations, Including recorded histories and physicals, laboratory tests (See Attachment 001 for required laboratory tests), chest x-rays, digital photos, neuorcognitive/neuropsychiatric examinations. March 1, 2008
4.4. All skin biopsy specimens and fiber samples collected from case-patients . March 1, 2008
4.5. Electronic database containing demographic information, zip code of residence, relevant past health history, such as medications, provider visits, and hospitalizations for cases. Database should include a unique patient identifier to allow linkage of clinical and other test results with demographic, healthcare utilization, and survey data. April 30, 2008
4.6. Database with denominators for all visits (total and by specialty) and hospitalizations during study period to allow estimation of disease rates in the population. May 30, 2008

That’s exactly what you should do if there is some evidence of a new infectious disease, parasite or environmental contamination. You get a patient population (the “study cohort”), and you investigate their symptoms, and see what they have in common, and look for common risk factors and diagnostic markers that might indicate a cause.

What’s a bit unusual here is that the patient population is “persons who have reported themselves as having this unexplained skin condition”, in other words: “people who think they have Morgellons”. This entire study is simply of people who THINK they have Morgellons. Very interesting.

The CDC are investigating Morgellons because it is an “emerging public health problem” and they have “received an increased number of inquiries from the public, health care providers, public health officials, Congress, and the media“, and “some who suffer from this condition appear to have substantial morbidity and social dysfunction, which can include decreased work productivity or job loss, total disability, familial estrangement, divorce, loss of child custody, home abandonment, and suicidal ideation“. All true, but with contested causation.

But wait a moment, why is the CDC getting ready to spend millions of dollars investigating Morgellons, when they simply could go to Oklahoma State University, where:
http://www.healthsciences.okstate.edu/morgellons/vision.cfm

OSU-CHS physicians/researchers have physical evidence of Morgellons Disease
– Morgellons is not psychiatric in origin
– Morgellons is an emergent disease

No only that, but they already have a patient population all of which can be instantly diagnosed by the appearance of fibers under the skin.
http://www.healthsciences.okstate.edu/morgellons/docs/Wymore-position-statement-2-19-07.pdf

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.
…
100% of the patients, that were felt to genuinely have Morgellons Disease, have large microscopic-to small macroscopic fibers visible under their outer layer of skin.

There are doctors and professors there who have been looking at this for years, and have sufficient evidence to convince themselves 100%:
http://www.mysanantonio.com/news/medical/stories/MYSA072406.morgellons.KENS.1e13fade.html

“I am 100 percent convinced that Morgellons is a real disease pathology,” said Dr. Randy Wymore, an assistant professor of pharmacology and physiology at OSU.
…
Dr. Rhonda Casey has examined more than 30 Morgellons patients.
“There’s no question in my mind that it’s a real disease,” she said.

So if Oklahoma State University has already figured this out, why don’t they help out the CDC? Do they actually have any evidence? Could it be they’ve been a little hasty in their certainty? Perhaps a little unscientific? Or could they save the CDC some money?

August 1, 2007 by Mick West CDC Medical Professional Science

OSU-CHS and Morgellons

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.

June 20, 2007 by Mick West Medical Professional

KCET Life & Times on Morgellons

Here’s the best report I’ve seen so far on Morgellons:

http://www.kcet.org/lifeandtimes/blog/?p=131

It’s a seven minute video, and a refreshing change from the brief alarmist segments we’ve seen so far on local TV. It actually presents a very balanced look at the problem, and is well worth a view.

In the accompanying text there is a telling quote from Professor Wymore:

“I entered Morgellons research as a skeptic and have come to understand it as a multi-system disease of unknown cause. Morgellons is off-handedly discounted by many public-health officials and physicians who ignore physical and neurological symptoms — and, instead, label sufferers as delusional without looking at their skin.

If medical professionals would employ a simple diagnostic tool, such as a dermatoscope, they would see microscopic fibers under unbroken, non-scarred skin as my Oklahoma State University Center for Health Sciences colleagues and I have seen. OSU-CHS researchers have evaluated fibers and material collected by clinical faculty, healthcare providers and patients.”

Wymore seems stuck in a bit of a mental rut, saying the same thing over and over without really stopping to consider the implications of what he is saying.

Supposedly there are over 5000 people with “Morgellons”. They usually report having gone to many doctors, usually in double figures. That’s over 50,000 doctor visits.

What Wymore is saying that that out of those 50,000 visits, they have all been “off-handedly discounted … without looking at their skin”.

Just consider for a moment the implications here. Out of 50,000 docotor visits nobody has noticed that there are fibers growing under the skin? Out of 50,000 doctor visits, including thousands of dermatology visits, nobody looked at the skin of people with obvious skin problems?

Clearly these patients have had their skin examined several times by many doctors. The doctors diagnosed whatever the skin conditions were, and if they saw fibers they did not look suspicious, as it’s perfectly normal to have fibers in your lesions.

Wymore should put up or shut up. He claims to be 100% convinced, and has claimed this for many months. He is a scientist, so he must be basing this on observable evidence. So far all he has produced is a few anecdotes and a couple of unidentified inorganic fibers. If the evidence is as plain and convincing as he claims, then what exactly is the problem in producing this evidence?

Professor Wymore, what would be more productive: performing PCR on bits of lint for several months, or showing your evidence to a few dermatologists and getting the medical community on your side? I suspect that deep inside you really know the score. You are just more comfortable doing your meaningless tests, and being a hero to a sick community.

What would Barry Marshall do?

December 8, 2006 by Mick West Media Medical Professional

Doctors & Patients

The problem of Morgellons is primarily one of a stark divide between the perceptions of the doctor on one hand, and the patient on the other.

The doctor sees a varied set of physical and mental symptoms that could be caused by one or more conditions. They see lesions on the patient’s body that often look like the patient has scratched themselves. They also see the patient pointing out things on their body, like lint, hair and specks of dirt, and they hear the patient say these things emerged from their body. They hear the patient insist they have a disease called “Morgellons” that has only recently been discovered.

The patient sees the doctor trying to “explain away” what are, to them, obvious symptoms. The patient thinks they feel the the fibers move, and emerge from their body. The patient is frustrated by the doctor’s suggestion that there might be an emotional component to their symptoms. The patient rejects the doctor’s diagnoses and substitutes their own.

In this post, I’m going to focus on the doctor’s perception of these patients. I feel what these fifteen doctors and professors say here really encapsulates and explains many of the problems, and answers many of the arguments surrounding “Morgellons”.

http://www.timesonline.co.uk/article/0,,18393-2188371.html

“This is not a mysterious disease,” says Dr Norman Levine, a Professor of Dermatology at the University of Arizona. “If you polled 10,000 dermatologists, everyone would agree with me.” He says he has seen 100 patients suffering from such symptoms, and they responded well to treatment, including a drug called Pimozide, which is used for chronic schizophrenia. According to Dr Levine, they are suffering from a monosymptomatic disorder in which they are absolutely convinced something is in their skin, a delusional parasitosis. He says he has studied the fibres his patients bring in by the bag-load and they are textile in nature.

http://www.livescience.com/humanbiology/060526_morgellons.html

Michael Girardi, a dermatologist at the Yale School of Medicine, had never heard of Morgellons but when its symptoms were described to him, he was reminded of another disorder that is well known to doctors. “They just renamed it,” Girardi told LiveScience. “We just call it delusions of parasitosis.”

“It’s basically when a patient thinks that there’s something coming out of their skin, a material or bug of some sort, when truthfully there’s nothing there,” said Stacy Beaty, a dermatologist at the Saint Louis University School of Medicine.
In medical schools, physicians learn to watch out for the “matchbox sign” of delusional parasitosis, when patients bring in hair, skin or clothing lint, sometimes in matchboxes, that they claim contain the insects or parasites responsible for their torment. However, when examined, the samples reveal no such thing. The lesions and scratches sometimes seen on patients with delusional parasitosis are usually self-inflicted, Beaty said.
“To rule out any infectious causes and also to put the patient’s mind at ease, a lot of times we’ll do skin biopsies,” Beaty said in a telephone interview. “If we feel that it’ll be helpful, we might also start different anti-psychotic or anti-anxiety medicines.”

In response to rising media coverage about the condition, the Los Angeles Department of Health Services recently issued a statement that said bluntly: “No credible medical or public health association has verified the existence or diagnosis of ‘Morgellons Disease.’ The current description of the disease is vague and covers many conditions.”

http://www.rgj.com/news/stories/html/2004/05/08/70309.php

“In many cases, (delusional parasitosis) is a mono-delusional problem,” Lynch [Dr. Peter Lynch, professor emeritus in dermatology at the University of California, Davis] said. “The patients are normal in every other way. It’s always hard to get such patients to believe it’s a psychological problem. Some patients are very convincing, and I’ve had psychiatrists call me about referrals I’ve made and ask if I’m absolutely sure there’s nothing organic going on here.”

He said in the 40 years he has been practicing medicine he hasn’t seen a delusional parasitosis patient with physical symptoms that can’t be explained. He said while it’s possible some cases may be wrongly diagnosed, it’s unlikely a large segment of patients is suffering from a physical illness.

“You can miss a case and of course that happens,” Lynch said. “But are many being missed? In a word, no.”

http://www.rgj.com/news/stories/html/2004/05/08/70307.php

When told of Dr. Bill Harvey’s successful treatment with antibiotics of Morgellons’ patients in Houston, Dr. Peter Lynch of the University of California, Davis said the “cures” are easily explained by the placebo effect. Patients treated with sugar pills, for example, often get well because they believe they are receiving medicine

Lynch said 80 percent of patients with delusions of parasites respond to psychotropic medication, an indication their illness is mental.

“Anecdotal evidence doesn’t carry much weight,” Lynch said. “There are many anecdotes of alien abductions, but that doesn’t mean they are true. And as for the pictures, you can see pictures of the Loch Ness Monster on the Internet, too.”

“If there were a peer-reviewed study, with 15 or 20 patients who have the same exact thing in their skins, then maybe I’d believe it,” Lynch said. “When fiberglass curtains first came out, many people with skin conditions were diagnosed with delusions of parasitosis (DOP). But studies showed these patients had tiny (fiberglass particles) in their skin.”

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2006/06/02/MNGOJJ6JO51.DTL&hw=Morgellons&sn=001&sc=1000

“There are a huge number of people out there with (delusional parasitosis), and most of them are not getting adequate treatment because they have this fixed belief,” said Dr. Dan Eisen, a UC Davis dermatologist. “It’s probably just a group of patients who haven’t gotten the appropriate treatment, and they’re calling it Morgellons.”

“Dermatologists are afraid to see these patients,” says Dr. Peter Lynch, professor emeritus of dermatology at the University of California, Davis. He says he has examined about 75 people with Morgellons-like symptoms in the past 35 years and believes they suffer from delusional parasitosis–literally, delusions of parasites in the skin. It’s a diagnosis people don’t like. One patient, threatening malpractice, convinced the state medical board to investigate Lynch. Another warned he had a pistol in the glove compartment of his truck, Lynch says. “He told me, ‘I’m going to shoot the next doctor who tells me it’s in my head.'”

Another prominent dermatologist, who insisted on anonymity out of concern for his safety, says he has diagnosed 50 or so Morgellons patients with cutaneous dysaesthesia–a neurological disorder that can result in the sensation of scuttling insects. And the spiny things? “In every case I’ve seen it’s a textile fiber, and it’s on the surface of the skin,” he says. He typically puts a cast over the lesions to prevent further irritation and after four weeks removes it. “Guess what?” he says. “The lesions are healed.”

http://www.dallasobserver.com/Issues/2006-07-20/news/feature_full.html

Part of the problem with a disease like Morgellons, [Tim Jones, an epidemiologist from the Tennessee Department of Health] says, is that its symptoms are both vague and varied. Before public health officials can investigate, there must be a clear definition of the disease. The Morgellons Research Foundation says they have that definition, but there is no one symptom, or even group of symptoms, that defines Morgellons. […]
“Trying to do studies on a group like this becomes virtually impossible because you may have 10 percent of the people who meet a real strict definition and a whole bunch of other people who don’t,” Jones says. “If you go through 10 patients and one is having discolored sweat, another one’s having pieces of spaghetti stick out of his skin and another one’s having, I don’t know, heel pain, it’s really hard to think what would tie these things together”.

http://www.post-gazette.com/pg/06204/707970-85.stm

“They suffer terribly, but it’s psychiatric,” said Dr. Dirk Elston, a dermatologist in the Geisinger Medical System in Danville, Montour County. “The fact that there’s something online to cling to, it’s a difficult obstacle for us.”

“The moment you mention psychiatrists, these patients get extremely angry,” said psychiatrist Alistair Munro, author of “Delusional Disorder.” “They say there’s nothing wrong with their brain. They have all kinds of explanations.”

“I found no evidence of [anything suspicious] in Andrew,” Dr. Heldrich [Dr. Fred Heldrich, a Johns Hopkins pediatrician] wrote to Dr. Frac after the visit. Then he added: “Ms. Leitao would benefit from a psychiatric evaluation and support, whether Andrew has Morgellons disease or not. I hope she will cease to use her son in further exploring this problem.”

http://home.hamptonroads.com/stories/story.cfm?story=110940&ran=130308

“People don’t need the Internet as long as they’ve got the media,” said Edward Shorter, a professor of psychiatry and the history of medicine at the University of Toronto. Once the media reports come out about a new possible disease, even if it’s not real, some people see it, “and they say, ‘That’s what I’ve got. That’s my disease,'”

http://www.click2houston.com/health/4246515/detail.html

“I always feel that people should keep an open mind and I think there are scientific experiments, what we call evidence-based medicine, that can prove or disprove that an organism is causing this,” University of Texas Health Science Center at Houston dermatologist Dr. Stephen Tucker said.

http://seattletimes.nwsource.com/html/nationworld/2003152087_illness26.html

“In dermatology, we speak about something called an ‘outside job,’ which is a skin eruption made by the patient himself,” said Dr. Noah Scheinfeld, an assistant professor of dermatology at Columbia University in New York and an expert on the psychiatric origins of certain skin disorders. “When you look at the pictures of these Morgellons lesions, they are classic for that.”

http://www.ent.uga.edu/publications/delusory.pdf

Self-excoriation is a common feature of delusory parasitosis, despite the individuals’ protestations that they do not scratch. Scratching may produce papular eruptions. Any repeated skin irritation produces a friction blister. Repeated rubbing of an area often produces a bleb (small blister) which, when ruptured, yields an open sore that may become infected. Once the sore begins oozing plasma and a scab forms, hairs and cloth fibers become entrapped in the sticky fluid. These flecks are dislodged and called mites or insects because they look like they have “antennae” and “legs”. Hair follicles often are pulled out; the follicle accompanied by the associated sebaceous gland looks like a worm. – Nancy C.Hinkle, Professor of Entomology, University of Georgia.

http://www.emedicine.com/derm/topic941.htm

Patients pick at areas until they can pull material from the skin. This may be referred to as “pulling a thread from the skin.” – Dr. Noah Scheinfeld,

http://www.rangelmd.com/2006/08/there-are-these-little-fibers-coming.htm

Logically, any credible study of Morgellons should have tried to explain the connection between the fibers and the symptoms. It’s not a good sign that no one has bothered to offer a formal starting theory on Morgellons fibers and that the [Morgellons Research] Foundation criticizes physicians for not looking for signs of Morgellons when they don’t really know what to look for themselves. – Dr. Chris Rangel, MD.

http://www.nature.com/news/2006/060828/full/nm0906-982a.html

Noah Scheinfeld, assistant clinical professor of dermatology at Columbia University, says patients sometimes come in with pieces of their skin mixed with other materials in a box or a piece of Saran Wrap. “Such patients are a challenge to help and to treat,” he says. “They want to be believed above all and tend to be socially isolated.” Scheinfeld says the Internet has helped those with parasitic delusions to band together and reinforce each others’ beliefs.

“There really is no scientific basis at this point to believe that [Morgellons] is real,” says Stephen Stone, president of the American Academy of Dermatology.

September 22, 2006 by Mick West Media Medical Professional

Morgellons on Television

The Morgellons Research Foundation is an advocacy group. It has orchestrated the current media coverage by spoon-feeding a story to television news, both local and national. For those in the media who would like to do a similar story, I present the following 12-step method:

Step 1 – Find some Morgellons Patients. This is not difficult. Simply ask around on the Morgellons Research Foundation’s recommended Lymebusters forum. There are many people there who love to talk about their symptoms. Beware, as there are a few oddballs around, who might not quite be on message. Beware of patients with web sites that make them look obsessive, such as Anne Dill on Good Morning America, or Richard Vigil on 10News

Step 2 – V.O. – describe the symptoms of Morgellons in a scary manner, you want to hook your audience here. Note that thousands of people across the country have Morgellons, and there are hotspots of the disease in California, Texas and Florida.

Step 3 – Have the patient describe what is wrong with them, and have them show their lesions.

Step 4 – V.O. – Say these patients are being ignored by doctors, who claim it is all in their heads. It is important to set up sympathetic contrast in anticipation of step 9.

Step 5 – Zooming photos. Show photos of fibers and multi-colored fuzzballs, zoom and scroll while doing this, as it looks a lot more dramatic. Speak with a tone of amazement while describing the photos.

Step 6 – Professor Wymore soundbites – like “there’s definitely something going on“. Show Wymore in his Lab and wearing a white coat. Make it look like he’s an expert in this field. Do not mention he’s not a doctor. Do not mention he’s actually an assistant professor.

Step 7 – (Optional), show Wymore holding the letter he has written for sufferers to take to their doctors.

Step 8 – More zooming photos, this time describe how people find fibers inside their lesions. Try to make it sound impossible.

Step 9 – Find a doctor, interview him for hours, and show the line where he mentions “Delusions of Parasites“. Ignore complex terms like Neurotic Excoriations, Dermiatitis artefacta or “Case Definition“, as these cloud the issue.

Step 10 – Back to Wymore (or Ginger Savely), and have them say something to make the doctor seem silly. If it’s Savely, don’t mention she makes her living treating people who are convinced they have Morgellons.

Step 11 – A ray of hope: say that, at long last, the CDC is investigating Morgellons. Do not mention they are just investigating if there is any evidence that it exists in the first place.

Step 12 – Tie it up, cut back to your initial patient to remind the viewer of the human side of the story. V.O. about the hope they have. Make it real.

July 28, 2006 by Mick West Delusions Lymebusters Media Medical Professional MRF Science

Medical Professional

Itching is not delusional

Why do Antibiotics help with Morgellons?

Morgellons disease: the mystery unfolds

Antibiotics

CDC vs. OSU

OSU-CHS and Morgellons

KCET Life & Times on Morgellons

Doctors & Patients

Morgellons on Television

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